My Life as a Stay at Home Mom

It's how you finish....

2010-12-05T12:02:00.005-06:00

I guess I thought I was invincible...I had no limits. I thought I was better than I was, stronger, more agile, more determined to push through the pain. But yesterday, I learned a huge lesson about myself that was a long time coming.

It was my third half marathon and I felt like I had done this dance before so it was really no big deal. You train and train and train, getting ready for the "big day" and when it finally comes, there's a point where you feel confident in your ability to perform. That's where I was at yesterday, confident...maybe even a little too much so. I had a goal in my head, a lofty one might I add, that I was going to finish this race with a time somewhere in the range of 1:30:00 to 1:39:00, basically somewhere within the hour and a half range. My past two races, I was able to exceed my goal so this time, I was sure I had it in the bag. My fastest pace during my last race was 7:53 a mile so I was determined this time around to bump it up into the 7:30's. Those mere 17 seconds a mile proved to be a lot harder than I could have ever imagined.

The first few miles were a little rough but they always are so I didn't think much of it. Around mile 5, we had to climb a hill that I was sure could've killed me. I felt like my calf muscle was literally tearing in half but I kept seeing that finish time of an hour and a half in my head, so I pushed through the pain. Right at the half-way point, I was averaging about 7:30 a mile and was suffering greatly. The humidity was high, at 85% and I was way overdressed for a 57 degree run. I spotted an ambulance around mile 8 and was very tempted to throw in the towel and take a little rest on their stretcher....after all, they were just waiting for one of us to collapse. The urge to give up was overwhelming, every muscle in my legs were burning with pain and I could not seem to regulate my breathing. Each hill was like a stab in the chest and I was quickly losing steam. I knew I had to stop for a minute and catch my breath but that was breaking one of my own rules, "Never stop running during the race. Pain is temporary, just push through it.". Yet, despite my best pep-talk efforts, I broke down and caught my breath for a minute. I was never the same after that which is why I am adament about not stopping during the race. It's like your body finally realizes what you're doing and everything gives out. Mile 9, mile 10, mile 11....I have never hated running so much. I kept swearing in my head that I was never going to do this again, I was dying on the inside and this was not the enjoyable experience that I am used to having. When I saw the finish line just ahead of me, I tried to pick up the pace and finish with a decent time. I was furious with myself over my performance and yet so exhausted that I didn't care.

Immediately upon crossing the finish line, I knew something wasn't right. I couldn't think, I couldn't talk, I couldn't breathe right. Fortunately, a nurse on the side grabbed me and put me in a chair. They were asking me a million questions and all I could say was, "I can't breathe...I need a banana"! I could feel my body sliding out of the chair but there was nothing I could do to stop it....I felt like I was a million miles away, almost like an out of body experience. My pulse was only 18, my temperature was 102 and I was way overhheated. Everything was a little jumbled after that and the next thing I remember was a doctor asking me, "Did you train for this marathon?". I actually laughed when he asked me that because I realized how ridiculous I probably looked. When I fully came to, I had been undressed, hooked up to oxygen and my husband was squatted down beside me rubbing my forehead. I had pushed too hard, reached my limit and thought I was capable of so much more.

This race taught me so much about myself and, even though it was a bad experience, it was a good one, as well. There's something about running that is addictive to me. I don't know if it's the sense of accomplishment or the endorphins or a mixture of both but I just can't seem to get enough of it. Because I've had two really good experiences in the past, I guess I just assumed my good fortune would continue. I had always been able to reach my goal and then pass it, I had always been able to push through the pain and run faster, I had always been able to pass the person beside me with ease and, to be honest, I think I was a little over-confident because of it. But lying there on a make-shift hospital bed, with nurses and doctors looming above me, it occurred to me how foolish I had been. I only stopped twice to drink during the race, why? Simply because I didn't want to slow down too much and mess up my finish time. I ran too fast from the very beginning, knowing that it was almost beyond my current physical capability simply because I was obsessed with reaching a goal I had set for myself. All in all, I had managed to suck the joy out of what could have been a wonderful experience.

I do this a lot in my life. I have wonderful intentions in the beginning, doing something for a good cause, going that extra mile and then it slowly becomes an obsession, an addiction, something that I put too much pride in and I lose the true motivation for why I started doing it in the first place. I started running because it was my quiet time with God....that's how it started. I've turned it into a stage for myself, a way to perform and praise myself for my efforts, I've strayed so far from where I started. I used to focus on the songs streaming through my IPOD, the worship music that kept me going, kept me strong, kept my eyes on Christ and yesterday that music was just an echo in my ear. I don't think I even asked God for His strength until mile 11....a little too late. My last half-marathon, I was praying and talking with God most of the race and at the end, despite how hard it really was, I knew the only reason I was able to finish was because of Him.

I swore yesterday that I would never run again, why did I do this to myself, why is this such a big deal to me? And that train of thought brought me back to the beginning, that first step on the treadmill when we were living at St. Jude's. In that regard, this race was just what I needed right now in my life. This isn't about me and it's not supposed to be. This is supposed to be about Him and what I learned through this is that I truly cannot do anything without Him. Sure I finished my race and just 4 minutes shy of my goal, but my attitude and focus throughout the race was terrible. So my goal for next year is not a certain finish time or a specific pace but just to finish knowing that I only did it because of Jesus Christ. I started off giving Him the glory and got sidetracked to the point where I was more focused on giving myself the glory. And what I plainly learned is that my life and my accomplishments aren't because of anything I've done, it's all because of what Christ does through me.

So I'll try again next year but this time my focus will be different. I'll give this another shot and I'll be sure not to rely on my abilities to get me through it. I can't tell you the joy I've received in past races from feeling run down, choosing to lean on Christ for strength and then feeling Him pull me through that moment of discouragement. It's what used to motivate me to get on the treadmill everyday, knowing that I was going to meet God there. It's been awhile since I've spent some time in that place and I'm looking forward to re-focusing my life once again. I think my new motto during the race will be, "It's not when you finish, it's how you finish".

The things you don't know

2010-07-25T18:58:00.004-05:00

I know you don't realize your childhood is different from anyone else's. I'm sure you've never realized that most kids your age don't have a port in their chest. I know you think our trips to St. Jude's are just a regular doctor's check up and I've noticed how often you seem to overlook the obstacles in your life as you battle through cancer. And although I'd never clue you in to any of this right now, maybe one day you'll want to know. So here's all the things you don't know....

When I rub your back as you're falling asleep, I'm always checking each bump in your spinal column for a tumor. Maybe that's crazy but it's become a nightly routine.
Everytime you wake up in the morning and toddle into my room, I say a silent prayer of thanks for another day with you.
Everytime you seem tired during the day, I have to remind myself to breathe because my first thought is "return of cancer symptoms".
Everytime you run, I can't help but smile because I remember the days where you didn't have the energy to even walk.
Anytime you fall down or get hurt, my heart stops and I can literally feel anger rising into me. I just can't stand to see you in anymore pain. I want to keep you as safe as I can for as long as I can.
Sometimes I watch you in the early morning before we've gotten out of bed and I think about everything you've been through. This is a huge part of my answered prayers, just having these little moments with you....life uninterrupted.
Anytime you complain of something hurting, it takes a lot of self control for me to balance a healthy concern with overwhelming fear and worry.
I love to look at pictures of you from St. Jude's. It's amazing to me to see just how far you've really come.
Everytime I rub your head and feel the shunt that is close beneath your scalp, I always think about the first brain surgery you had. There's one moment in my mind that I replay over and over again...the look on your neurosurgeon's face when he came in to tell us that you had a brain tumor. I could see it in his eyes before he ever opened his mouth and at that moment, my life changed forever.
I secretly think it's precious that you adore having a pacifier at night. There's a part of me that knows you're nearing the age where we should break this habit but there's another part of me that wants to keep you little forever.
I get anxious with every birthday that you have. Call it a lack of faith if you will, but with each passing year, I feel like we're running out of time. I know that's awful but it's the truth.
I also get extremely emotional with every birthday you have. Along with my apprehension of the future comes this incredible sense that we have made it another year with you.
I often wonder how all of this will shape your life one day. Will you remember any of this? Will it affect you forever the way it has me? Will you ever know how hard you fought and how brave you really were?

In closing, my precious Chunk, I love you. I hope and pray to God that you never have to relive any of the things you have endured in your little life. I know you are already starting to forget your days at St. Jude's. Just today you saw a picture of yourself with a mask on and you couldn't figure out who that "little girl" was and why she had that funny thing on her face. It's a blessing that you don't remember this. Thankfully, I do remember and I pray I will never forget. Who you were in those months of suffering has worked to shape who I am today and the perspective in life God has given me. As awful as it is, suffering and pain can be used by Christ to teach us things we would have never found otherwise. And so, one day, when you're ready, I'll read this to you and hope that you can see what I have seen in all of this. You are amazing, you are a fighter, your life is a testimony to God's power, strength and mercy and you, my Chunky Monkey, are a miracle. This journey we have traveled has been anything but ordinary and, even though we've been told your life will be short, I consider it a blessing to be a part of your life and this brave battle that you are fighting. I knew you were something special the day that you were born but it never occurred to me that God had graced me with an angel.

The shadow of death

2010-07-09T18:36:00.005-05:00

I know, it's been awhile. I can't really say I have some great excuse for not blogging, it's more like I've just been too busy being a mom. Things have been good, though. Our summer has been so incredible, I think we've managed to cram fun into every moment of every day. I am so thankful that Chunks-a-lot's good health has continued, we really needed a summer like this.

Unfortunately, life sort of came crashing back down on us a few days ago. Completely out of the blue, Chunks started complaining of a headache the other night. She had been a bit grumpy and sleepy before the headache began but I didn't think much of it at the time. About thirty minutes after she started complaining of a headache, the pain became so severe that she burst into tears, grabbing her head and crying out. I was terrified. I had already taken her temperature and was surprised to find that it was completely normal. About an hour after the headache began, she started vomiting. If I could explain the feeling I had in the pit of my stomach at that moment, it would be very similar to the feeling I had when Chunks was first diagnosed with cancer. It's like someone sucks the breath out of you, like you're completely empty.

Brain tumors are unpredictable. You never really know what they're going to do or when they're going to do it....they just seem to have a mind of their own. The doctors told us a long time ago that at any time, Chunks' tumor could start to grow again and we would see symptoms like headaches, vomiting, lethargy, irritability, loss of balance, etc. The symptoms can start off slowly and become more progressive over time or they can just hit hard and fast. For awhile after they shared this information with us, I felt completely on edge. Every clumsy fall Chunks had became a sign to me that her tumor was growing. Every time she cried, I assumed it was out of pain and that had to mean her tumor was growing. It was a maddening state to be in and it took me a long time to trust God enough to climb out of the fear that had consumed me. But as time went on and her tumor remained stable, I began to trust in our tomorrows instead of being fearful of what was around the next corner. Trust is a funny thing, it takes so long to build it and only a moment to destroy it. That's what happened the other day when I saw my little Chunk in so much pain, my trust, my belief in tomorrow, was damaged.

I can't say that I hate it when things like this happen because I don't. I hate that my little girl has ever had to suffer and I hate all of the things that she has had to go through but I sincerely appreciate the things I have learned from it. Everytime we have experienced a crisis, God has been waiting in the midst of it, ready to teach me something new. It's a hard way to learn but it's also the best way. Lessons learned like that are not easily forgotten. What I learned the other day was that I was starting to forget, starting to lose the perspective in life I had gained through Chunks' trauma. I had started taking things for granted, life was too comfortable and I was slowly becoming self-sufficient. I tend to do that sometimes. I was blocking God out--- after all, life was great and I didn't need to lean on Him as heavily. But in that moment, as I was reminded of how fragile my little girl's life really is, I hit my knees in prayer. I hate that it takes something so sobering to bring me back to Christ. By now, I would have thought that my entire world would rest in the court of a Savior who has saved the life of my little girl time and again.

I have cried out to God each and every night since that "incident" with Chunks. I have begged Him for her health, begged for more time with her, pleaded for His mercy to reign down on us. I've had to come face to face with the reality and the possibility of losing her. I cannot explain the way it makes me feel when I entertain the idea of God taking her from us. And it probably seems crazy that I would even think about stuff like that but you'd be surprised the thoughts that go through your mind when you have a child with cancer. She's got a 5% chance of making it to her 5th birthday and there are too many days where I feel like we are running out of time. I just want to see more of who she becomes, to delight in her milestones and to have the privilege and the pride of watching her blossom into a young girl. I just want more.

July 23 will mark one year since she's completed chemotherapy, an entire year off chemo....that's huge in the world of cancer. And in that year, there have only been a handful of times that I have even thought about losing her. Life has been so amazingly normal and I am so thankful that we've had this time together as a family, it's just what we needed. But a year is not enough time, I need more than that. I can't even put into words what Chunks-a-lot means to me. Every part of who she is amazes me, her smile, her eyes, her giggle, her chunky legs....I absolutely adore her. And her spirit is precious. She has the best attitude in life and she has every reason to hate the world. I find that simply amazing.

So at the end of the day, we have no answers as to what tomorrow holds. There's part of me that feels like we're back to living one day at a time, moment by moment. But we're also back to appreciating every minute of every day together, realizing that there are no guarantees. As much as I hate having to learn things through trauma, I'm smart enough to know that it's the only way I'll learn them. I know God wants my vulnerability, He wants my weakness to shine to highlight His strength. And I know He wants me to cherish every moment of my little Chunks' life so I won't ever have to look back one day and wish I had done things differently.

Someone once told me that there would always be times where God allowed bumps along this road to keep us believing in His constant presence. She said there would be times that would be so scary that it would almost be like a "shadow" of death. A shadow that threatens to steal from us the things we hold so dearly in life. And then she quoted this verse, which resonates with me constantly these days, "Yea, though I walk through the valley of the shadow of death, I will fear no evil; for Thou art with me."

Talks-a-lot...

2010-05-16T21:02:00.004-05:00

A week ago, we celebrated a big moment in Talks-a-lot's life....his 7th birthday! Even though he's now officially been seven for an entire week, I'm still in awe with this most recent birthday. I guess it just seems like time goes by a little faster every year.

Although I tend to get a little teary-eyed thinking of my little boy quickly becoming a little man, it's amazing to be able to watch him grow up, to plainly see the person he is becoming. So, Talks-a-lot, (and hopefully he'll read this one day so I'm not just talking to myself) here's all the things that make you amazing to me:

* You have the most incredible sense of humor that only seems to grow with you. I love that you can find a laugh at every corner, it's definitely made my life full of smiles and giggles.

* I love that you can be the most competitive person in the room and then turn around the next moment and take everything in stride. You always seem to know when to stop taking life too seriously.

* I never considered that you might be athletic, although I am sure your Daddy has dreamed of it! But it has been incredible to watch you play sports, especially baseball. I absolutely love yelling for you in the stands and your natural ability is amazing to watch. It just makes me proud to see you out there with your team and I've enjoyed it far more than I could have ever imagined.

* Your strength of character is astounding. I remember during a baseball game recently, your coach came running out to the stands to talk to me. He had handed out candy to all of the kids and you told him that you absolutely had to have your mommy's permission before you could eat sweets, so you sent him out to get my "okay". It brought me to tears as I sat there amazed at your integrity. It's rare to find such character in a seven year old and I greatly respect and admire that part of who you are.

* I love that you love math. I wouldn't have dreamed that something academic could bring us together, but it has. One of my favorite things in the world is doing your multiplication workbook together. You get so excited about learning new concepts and you're so teachable. It's like a parent's dream come true!

* You have the sweetest attitude towards your little sister. Even though she can be quite a "mess" sometimes, you are so patient and kind to her. You treat her like a best friend and it means the world to her and to me.

* You are respectful and obedient and I always know that my words will be met with a "Yes ma'am".

* You are confident, outgoing and always on the look out for new friends. I love that you can go anywhere and make a new friend. I wish I had half the confidence you have.

* You're compassionate beyond words. Everytime I have ever felt sick, you've been the first to jump at the chance to take care of me. Whether it be taking on a chore that I can't complete or covering me with a blanket while I'm lying on the couch, you're there to do it.

* I love that you can have maturity beyond your years, yet still know how to be a kid at the same time. That's a hard balance but you manage it with ease.

* You're a big helper and you seem to thrive off of doing things for others. I know all I have to do is ask and you'll be there.

* I love that you embrace life with such passion. Everything is a new adventure to you, every moment is a chance to meet someone new or discover something incredible. You always help me to see that even the simplest thing can be something amazing.

Talks-a-lot, this is just the short list of the things that make you who you are. And as we go through each year, I find more reasons to respect you, admire you and cherish you for who you are. You've taught me so much about myself just through watching you grow up. I think you're an amazing person. I think you are everything that any parent could ever want in a child. It is such an honor to be your mommy and I am so proud of the person that you are and the person I see you becoming. This year has been one of the best, in my opinion. It's so exciting to watch you grow up and I can't wait to see what this next year has in store for us. I know enough about you to know that I better scoot forward and put my seat belt on! Thanks for being who you are, it's made my life so full. I love you and Happy 7th Birthday!!

Taken too soon...

2010-04-12T20:25:00.002-05:00

Last night, I received some terrible news that one of my good friend's two year old daughter had been tragically killed by a car. She was playing near her neighbor's driveway and he didn't see her when he was backing out. Sadly, she was hit by the car and died later at the hospital.

I was immediately devastated by this story. I knew this little girl, I was friends with her mother, we've been on playdates with her siblings.....it just didn't seem possible. I didn't expect to be impacted so greatly by this, I figured I was a little more numb to death than most people because we have been surrounded by it for so long since Chunks has become a patient at St. Jude's. But this was just different. This little girl wasn't living a life of sickness, she was a healthy, happy toddler with an abundance of energy. Her life was cut short by an accident and it left her family shattered.

I sat with her mom for two hours this afternoon and cried with her, listened to stories about her precious daughter and mourned with her over this tragic loss. I was surprised how much this hit home with me. Just to see this mother so torn up by the passing of her daughter absolutely broke my heart on a level that I was not prepared for. I can't tell you how many times I have gone over this scenario in my mind with my own little girl and her unpredictable future. I know that is morbid but it just comes with the territory of having a "terminally ill" child. You think about death, you go through the emotions you might feel at the possibility of their passing, and you'll do it a million times over. And as I sat there today, watching this mommy mourn the loss of her little girl, it made me realize how much I have underestimated the devastation that comes with losing a child.

I laid in Chunks-a-lot's bed tonight for much longer than I usually do. She fell asleep almost immediately and that's usually my cue to exit and enjoy some quiet time, but I just couldn't convince myself to get up. I thought about how blessed I am to still have her in my life, how precious these moments are, how lucky I am to be able to lie in her bed and feel her breath on my face. I thought about not having her, how much it would hurt to lose her, how devastated our family would be should Jesus choose to take her.

It was like I felt those feelings that my friend was suffering through today. They were real for me, almost too real. And as much as I try and cherish all the little things, all the tiny moments that I know I'll never get back, I never truly realized how hard it would be to have to give her up until today.

This isn't about me and I don't mean to make it that way. These emotions and these feelings that I am experiencing were already there, I just have refused to acknowledge them. And yet today I couldn't escape them. My friend commented on how much she had hurt for our family, watching as we battled through cancer with Chunks, but she never thought she would have to walk through her own tragedy. I told her God puts people in our lives for a reason, He knows we're going to need them.

It's funny because all this time I thought God had placed people around me because I needed support, encouragement and strength. It never occurred to me that God might have placed me in someone's life because they needed a part of me that only exists because of what we have been through. I wish I didn't have to be there for her in these circumstances. I wish she could just have her baby girl back and make all of this go away. But instead I am left with the reality that Jesus has taken this precious child and it's killing me to watch her family as they suffer through this.

Her mom was overwhelmed with tears as she told me how she wished she could just hold her daughter one more time, kiss her once more, hug her one last time. Unlike the parents of cancer patients, this family didn't know their little one's life would be cut short. There was no warning, no preparation. They didn't go through the stages of her passing, they didn't hold her hand as she took her last breath.....Jesus just took her. Just like that.

I cried for most of the day today as I was completely overwhelmed by the grief of this situation. I thought all of my experience with what we have been through would make me better able to encourage my friend through this difficult time. Instead all I could do was sit there, speechless. There are no words, there is no encouragement, there is no relief in knowing that she is in a better place. They just want her back. And everything I know, or thought I knew, was turned upside down today as I was confronted with the reality of loss....true loss.

This family and their tragedy has forever impacted my life. The pain, the tears, the shock, the complete and utter suffering that I saw today brought me to my knees. I thought I was stronger than this, but it's somehow refreshing to know that I'm not. Please pray for this family who will remain in anonymity out of respect for their privacy. Pray for healing, for peace, for comfort and for strength as they prepare to lay to rest their precious little angel.

Meeting Dora

2010-03-17T20:35:00.006-05:00

For anyone that knows my little Chunk, you have to know how obsessively in love she is with Dora the Explorer. Chunks-a-lot was never fond of cartoons and refused to even watch television until she turned two years old. That was quite a difference from our chatty Talks-a-lot who was in love with the television before he even turned a year old.

Dora was the very first cartoon Chunks had ever seen and, for some reason, she just fell in love with her. It's pretty much a part of our daily lives now and somehow all conversations root back to Dora the Explorer, Boots or Swiper. For instance, if Chunks is in a dark room by herself, she announces pitifully that Swiper is going to get her. Anytime we run an errand, her Dora purse or Boots stuffed toy must come along....after all, they looove to explore. I am constantly surprised by the foreign words I hear repeated from the backseat, thanks to our Spanish-speaking friend. And even the other day, my little Chunk started to fuss about something and I reminded her that she was a "big girl" and didn't need to whine about not getting her way. Chunks' response came with a smile and beaming eyes, "I need to be a big girl like Dora?". Yes, it is cute, precious and can get a little obsessive at times. But nothing was cuter than today when we finally met Dora the Explorer.

We have a science center/museum in our city called the McWane center. The kids love all the hands-on activities and it seems as though we could spend the entire day there and they would still beg to go back the very next day. Well, today was extra special because Dora the Explorer was coming the McWane Center and, gasp, taking pictures with the children! When I first found out about it, I told Chunks-a-lot and her entire face lit up in a way I have never seen before. I honestly regret telling her two weeks in advance because I have been interrogated daily about when we are going to meet Dora. "Is today the day?", "We going to McWane Center today to meet Dora?", "I see Dora today?", "We're going bye-bye to meet Dora at McWane Center?". Yes, every day I have been pestered with these endless questions by my very desperate daughter. So when we woke up this morning and she asked her daily question, it was my pleasure to reply, "Yes, today we are going to meet Dora!!!".

Of course, in honor of this event, we had to watch a Dora movie this morning, wear a Dora shirt to the McWane Center, carry our little Dora purse and bring the Dora backpack. It was like Dora overload. And as excited as I secretly was to watch all of this unfold, nothing could have prepared me for how absolutely precious the whole thing was. I have never, in my life, seen Chunks-a-lot so excited about something. When the double-life-sized Dora walked out into the room, she went crazy. Chunks started waving her little hand and blowing kisses, jumping up and down and was just beside herself with joy. We had to wait in a 30 minute line to have our picture taken with Dora and when it was finally our turn, Chunks was just beaming.

She was insistent that Talks-a-lot come with her even though, in his own words, he is not really a "fan". Fortunately, he realized her excitement and agreed to go along with it. What a sweet brother he is!

Chunks hugged Dora, blew her kisses, giggled a little and smiled from ear to ear as Dora the Explorer rubbed her back. After I snapped a picture, Chunks got down from the bench and just stood there in awe, staring at her precious Dora. She talked about it the rest of the day and even said with great pride, "Dora smiled at me!!!!". I mean, of course she smiled at her, she had a permanent smile sewn onto her cloth face. I got such a kick out of her reaction to this entire situation and it's a memory I will cherish forever.

The only bad part of the day: the parking deck was full so we had to park on the side of the street in downtown Birmingham, there were probably a thousand people at the McWane Center and it was complete insanity trying to keep up with both of my kids, and we had to walk back in the rain to our car and were approached by a homeless man who needed money.....just a little unnerving. But nothing could compare to this picture I have in my mind of the smile on my Chunks' face as she lived out a little girl's dream come true...

2010-03-11T20:23:00.004-06:00

I don't blog as much as I used to. I actually have to force myself to do it sometimes. It's not as though I don't enjoy it, it's just because this is the place where I used to release all of my fears, all my pain, the daily heartache we were enduring at St. Jude's. Now that we're not in the midst of pure tragedy anymore, I feel as though I don't have much to say. Or maybe I do and I'm just scared to say it. Releasing your emotions can be exhausting sometimes.

Our lives have been so normal lately. Chunks and Talks-a-lot have become just like any other normal brother and sister. They fight, they laugh, they play together, they pick on each other and sometimes they'll shower each other with love and affection and it just makes my heart melt. Our routine has changed a bit, as well. Talks is in Awana's at our church and has recently started playing baseball with a local league here in town. Chunks-a-lot is still going through quite a bit of separation anxiety, so she prefers to be with me unless I decide to pry her off my hip....which I do from time to time. We are a lot busier than we used to be but I enjoy it nonetheless.

It's interesting to me how quickly our lives have changed in the past year. We went from a peach fuzzed, skinny, constantly fatigued, always medicated not so chunky Chunk to a "plump", energetic, giggly, beautiful-haired little girl who is currently off all medications. That's a big leap! And through this transformation, somehow I forgot. I forgot just how tiny she was after being so sick during treatments, I forgot how much pain she endured on a daily basis, I forgot how bald her little head really was. It hurts so much to look back at pictures that I often try not to.

But the other day as I was updating her caringbridge page, I decided to read back on some of the journal entries....back to where this journey began. And what I found absolutely brought me to tears. For there we were, somewhere in the middle of our story, surrounded by chemo treatments and constant sickness and I was dying just watching my little girl suffer. I wrote about how much I missed home, how much I missed playdates with friends, church on a Sunday morning, a lazy Saturday at home. I was desperate for my little girl to experience her childhood for what it should've been, for her to be able to walk without falling, to play without getting tired, to sleep without waking up sick and in pain. And as I read those words, I was humbled. For here we are. We are living in our answered prayers and we often don't even realize it.

I take life for granted so much more than I used to. My little Chunk's every step, every meal and every milestone used to be something I praised God for on a daily basis. Now I'm lucky if I can keep my eyes open long enough at night to finish "talking" with God. I don't want to forget any of it, I think that what we went through changed us and should continue to change us forever. I mean, it's a miracle that our Chunk is alive, much less thriving and developing beautifully.

I guess I've just had this subject on my mind for awhile and, as though to add fuel to the fire, I read a caringbridge update the other morning. It was from the mom of another brave St. Jude's buddy of ours named James. Although he was diagnosed with an aggressive kidney cancer, he did well through treatments and his mom held steadfast to her faith that he would be healed. Unfortunately, he passed away six weeks ago. Here is one of her more recent journal entries:

Hello Everyone,

Today marks one month since James left us. I miss him more than words can say. Many things have gotten easier for me, but there is always that one point in the day that you realize they are never coming home, and that is a horrible feeling. Last night I couldn't sleep. I just kept thinking about our last night with James. We were up all night with him. He just couldn't get comfortable. James would ask us to rock him, and ten minutes later he wanted to get back in the bed with us. He was hurting, and I couldn't do anything to fix it. As a mom, you always want to fix whatever is wrong with your baby, and I could bring him no comfort that night. I hate that he had to go through that, and I hate that there was nothing I could do. James was such a loving and caring little boy, and he didn't deserve to hurt or go through any of the things he endured. Everyone told me that anger is part of grief, and I am beginning to find that true. I get very frustrated that James was taken from me. I have been going to church, but it doesn't bring me the comfort it did before. I get frustrated because I always trusted in God's plan for our family. I knew that if I trusted God and prayed everything would be okay. God took James from me, and I know he has a reason, but it is very hard not to get mad sometimes. The bad thing about this is that I don't want to get mad at God. He is my only hope that we will one day find peace with the plan he has for us. It's all hard to explain, and I don't think you can really understand it unless you have been through it. I did attend mass this morning, and after, I went to James' grave. I talked to him and watered the tulips I planted for him. Nothing makes me feel better though. It's as if a piece of me is literally missing. I feel the void, and I can't find a way to be whole. I just want him back. I want to hold him, kiss him, and listen to his little voice saying mommy I love you. It is even hard to go to the grocery store. I feel lost because 90% of the things I would normally have on my list we don't need anymore. Michael and I hung up some of our family pictures this week, and that was hard too. I looked at James' picture, and it hurt to think we will never update his pictures again. This is it. He is really gone. I don't know what else to say. It is very hard to not have James with me, and I just miss him more and more each day.

I was in tears after reading that. It brought back so many of my own fears about losing my little girl. It almost made it too real for me to handle. I've read this post several days in a row since I first read it and, honestly, it's helped me tremendously. This battle needs to be real to me, it needs to stay fresh on my mind and I never want to lose the perspective in life that it has given me. The fact is, neither one of my children are guaranteed tomorrow and both of their lives are so precious to me. Sometimes I get tunnel vision and I forget how important today is.....just today. I hug both of them just a little bit tighter at night and try my best to not let the daily stresses of life override the precious moments that I'll never get back. That monster of a tumor might still be in her head but for just today, that little girl is healed. I don't have to wait for the tumor to disappear to claim a miracle in her life, no, I'll claim that now. She can run and jump and is finally enjoying her childhood for what it should be.

Now if that's not healing....I don't know what is.

Toddlers don't tinkle on command

2010-01-28T21:39:00.004-06:00

A couple of weeks ago, Chunks-a-lot came down with some interesting symptoms. None of them seemed to be related but all of them were odd enough to worry me, so off to the pediatrician we went. After some questions, confirmation that she did, in fact, have a fever and some other formalities, we were handed a "tee-tee" cup and a sanitary wipe. Seriously? My little one is 2 1/2. She is fully potty trained but that does not mean she will tinkle in a cup. The nurse told me that we could always put a "urine bag" on her but I assured her that would never work. We have tried to get a urine sample with a bag at least 20 times at St. Jude's and not once have we been successful. Even though I had some serious reservations about the entire potty and cup situation, I had no choice but to go with the lesser of two evils.

First off, let me just say something. If you expect toddlers to even be able to go to the bathroom at a doctor's office, you might want to think about installing a mini-potty. Because, as I discovered, you cannot just sit a tiny person on top of an adult's potty because, ahem, they will fall in. So as I half-squatted on the floor, trying to hold up a thirty pound child at a very awkward position, I started to wonder how I was going to catch tee-tee in a tiny cup. I decided to "one-arm" it (that is, use one arm to hold her on the potty and the other to hold the cup beneath her) and was able to maintain that position for about 30 seconds until my biceps gave out. Then I tried to get her to hold the cup......impossible.

Finally we were able to get into a somewhat workable situation and I was in position, ready with my cup. I waited and waited and nothing happened. Finally, I asked Chunks, "Do you need to potty?". She casually glanced up at me, unaware of my aching muscles, and replied, "No...I don't need to potty.". Let me make this part clear, she said it with an attitude that said to me, "Why in the world did you ever think I needed to potty?". I was a little frustrated at this point, mostly because I had broken a sweat and was regretting my decision to wear a sweatshirt that day. We walked out of the bathroom and the nurse chuckled a little as she handed me a new urine cup. I kindly informed her that we had not even used the previous cup but, alas, it did not matter....we had broken the sanitary seal at the top. She was kind enough to let me know we would need a brand new cup and sanitary wipe every time we entered the bathroom. How convenient. "We could always try the urine bag, ya know.", the nurse said as we walked down the hallway. I, again, assured her that it wouldn't work and went on my way.

I poured about 16 oz. of juice over the next few minutes and after lots of drinking and waiting, Chunks announced that she had to potty. I was extremely excited and whisked her down the hallway to the bathroom, new cup in hand. We got into position again and I kept thinking to myself, "This is it, we're going to finally be done with this!". Nope, another failed attempt. Another clean cup, another sanitary wipe and another cup of juice. We were in our small room for two minutes when my sickly Chunk blurted out, "Tee-tee is coming!". We briskly walked to the bathroom for attempt number three. After holding her on the potty for a few minutes, I realized that she was not going to potty. I didn't want to ask for another urine cup so I tried to get creative. I bribed her, begged her, bribed her again and even made "swooshing" sounds to try and get her to tinkle but none of it worked. Feeling defeated, we left the bathroom, were handed a new cup and trudged down the hallway to our room.

The nurse popped her head in again and said, "You wanna try the urine bag now?". I wanted to roll my eyes but I managed to mutter a meekly "yes" instead. She put the bag on and said she would come back in a few minutes to check on us. A few minutes later, still nothing had happened. I'll be honest and say that I was secretly smiling that she had not tinkled in the bag. I am after all her mommy and I know everything...right? Well, apparently not. The nurse said she had a trick, turned the faucet on in our room and left. Exactly 13 seconds later, my Chunk finally tinkled....and in the bag, no less. All the nurses praised Chunks and she even got two suckers and a happy face sticker. She was all smiles.

I learned two things that day. One, toddlers do not potty on command and two, I don't know everything, even when it comes to my children. I guess I had to eat a little "humble pie" that morning as my stubbornness really only caused me more frustration than anything else. I'm kind of thinking that it might have helped my complex if they had given me a sucker and a smiley face sticker, as well. Fortunately, as an act of graciousness, my Chunk was kind enough to share her already-licked lollipop with me while we were driving home.

I guess, as moms, we might not always get the credit we deserve but, somehow, I think our kids always notice the little things we do. After all, we might not be right about everything but it's nice to know that they still appreciate us in their own little way. While a pat on the back and a "thanks for the effort" speech might work in most cases, when it comes to my little ones, I'll take a half-eaten lollipop any day.

What it's like to be human

2009-12-30T20:41:00.003-06:00

Life, for the most part, has been exceedingly normal for us lately. We've been busy with the family coming into town and all the festivities and activities that have been ushered in by the holidays. Yet over the past few weeks, my heart has been heavy.

I'm not really sure when I fell back into this rut of worry and anxiety but it hit me like a ton of bricks. And, suddenly, it's all I can think about. There was a part of me that thought as time went on with my little Chunk being stable and healthy, I would become more confident in her miracle. But to be completely and perfectly honest, that is the opposite of what has happened. The more time that passes, the more I find myself grasping at just the air to breathe. The happier we are, the more scared I become. And as she blossoms into a beautiful little girl, I find myself pressed for time, scared that our time is running out.

The outright conviction I feel for even typing these words is unbelievable. I should have more faith than this, right? I should be more confident in Jesus Christ, it should be so much easier for me to believe....or at least I feel like it should be. And yet, I struggle.

It comes at the most random moments. We'll be sitting in the floor playing and I'll look at Talks and Chunks playing with each other, loving each other and my heart breaks. Tears well up into my eyes and I have to choke back the emotions that are rushing through me. I mean, they may fight and bicker but those two children love each other so fully and completely that it brings me to my knees. He loves her, as a sister, as a playmate and as a best friend. It's just precious.

So I find myself constantly sitting here overwhelmed by the love I feel for my family. And the more time that passes, the more I fall in love with my children. I never knew how blessed I would feel as a mother. It's indescribable. And from this perspective, Chunks' cancer makes me fall to pieces. I think her illness hits me at different moments and at different degrees as this journey continues. And while I'm not filled with the hopeless despair that once plagued me in the beginning, I now find myself overwhelmed by a sadness that I cannot even put into words.

It doesn't help that, lately, I have gotten email after email alerting me to the fact that one of our precious St. Jude's friends has relapsed, is nearing the end of their journey or has already passed. And constantly hearing this news sometimes makes me feel like I must be living in a fantasy world. The human part of me thinks, "Who am I kidding?!". Medically, statistically and humanly speaking, our daughter should not survive. There is only a 5% chance that she will even live to celebrate her 5th birthday. As a mom, what am I supposed to do with that?

I started off this blog in tears, feeling exhausted from the pain I feel within my soul. I feel like I am walking through each day with a backpack full of pain lugging behind me. And somehow just putting all of this down on "paper" makes me able to breathe a little easier. At the end of the day, there is no good answer, there is no simple solution but there's always Jesus Christ. And I know He has allowed this so He must know we are able to survive this, emotionally, mentally and spiritually. I guess I've just been really human lately. It must just come with the territory of actually being human....

So I suppose there's just going to be days where my heart is broken and my world is ripped apart but that's just apart of it. And I guess I might have days where my faith isn't as strong, my will to believe is weak and my fears just get the best of me. After all, following Jesus doesn't make life easy, it just makes it bearable. And at the end of the day, all I can really do is turn from my fears and come to Jesus...

Weak and wounded sinner
Lost and left to die
O, raise your head for Love is passing by

Come to Jesus
Come to Jesus
Come to Jesus and live

Now your burden's lifted
And carried far away
And precious blood has washed away the stain, so

Sing to Jesus
Sing to Jesus
Sing to Jesus and live

And like a newborn baby
Don't be afraid to crawl
And remember when you walk sometimes we fall, so

Fall on Jesus
Fall on Jesus
Fall on Jesus and live

Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then

Cry to Jesus
Cry to Jesus
Cry to Jesus and live

O, and when the love spills over
And music fills the night
And when you can't contain you joy inside, then

Dance for Jesus
Dance for Jesus
Dance for Jesus and live

And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory's side, and

Fly to Jesus
Fly to Jesus
Fly to Jesus and live

Let the race begin

2009-12-10T20:43:00.002-06:00

I used to be one of those people that just didn't "get it". Every time I would see someone jogging down the side of the road, wearing those ghastly tight leggings and dripping sweat from head to toe, I would most often think how crazy they were. I am sure there was a bit of jealousy in the back of my mind somewhere, as well, maybe because I wished I could be that athletic. Because let's face it, I'm just not an athlete.

In elementary school, I attempted to be a cheerleader. This most often meant that I showed up at Saturday basketball games more excited about the snacks and drinks than the cheer routines. It took all of my girlish will power to muster up a "hoo-rah!". Then, in high school I (let me tread lightly here) tried to play volleyball. I was probably the least-coordinated person on the entire team. When our coach said jump, my first instinct was to sit down. Why? Because I am just that uncoordinated when it comes to sports. The first and only time I actually did something right in a game was at the end of the season in our "championship" game.

Our coach graciously let me play (considering we were ahead by an obscene amount of points, I assume she knew I couldn't give away too many points in just a few minutes) and I was more nervous than excited. I was on the front line, right up by the net and the setter "set" a ball up in the air for me to spike down on the other team's court. I went up, actually struck the ball with the palm of my hand and made an amazing spike on the other side. I was so excited that I immediately started jumping up and down, screaming and laughing like a four year old. My coach, half yelling and half laughing, kindly reminded me that the ball was still in play. Yeah, maybe a little bit too early for celebration. But we won, not in any way because of me.

I also managed to break both of my pinkies in sports-related activities. The first, during volleyball in P.E (imagine that). The ball was served, came across the court and hit me directly on the side of my pinky, snapping it in half. I know, it makes you cringe, right? My other pinky was broken during a Powder Puff football practice in high school. I was diving for the ball, landed on my pinky and, once again, it snapped in half (just in a different direction than the previous break). All of this should lead you to the obvious conclusion that athleticism does not run through my veins.

This is why Saturday, December 5, 2009 was probably my biggest physical accomplishment. I actually ran a half-marathon.

I first learned about the Memphis Marathon while we were living at St. Jude's last year. Every year, they hold this race and it is a huge fundraising event for St. Jude's, most often bringing in over a million dollars. Considering my little Chunk is a patient at the hospital, I felt compelled to begin training for the marathon and so my journey began.

At first, even running a mile would send me into a hyperventilation-type state. It just seemed like I couldn't catch my breath and I would be so tired afterwards, I could hardly function. Running for 13.1 miles seemed like an impossibility to me but, in some ways, that just made me want to do it more. And for an entire year, I ran. Three days a week, like clockwork, I would hit the treadmill, running until I physically couldn't anymore. I was sore all the time, my legs burned constantly and my appetite seemed to grow by the minute. At some point, I wondered if all this discomfort was really worth it but I pushed that thought aside and continued on.

Throughout the year, God really started using my runs as a time to focus on Him and not on everything else that I thought mattered. A lot of times, I would come home from the gym tired but refreshed, I had spent my time with the Lord and I felt renewed. Jesus also used this time to teach me a lot about myself. I wasn't as strong as I thought I would be. I couldn't handle this on my own, I couldn't always push past the pain when I wanted to....sometimes I almost felt like a little girl. There were days when I struggled so badly that I wanted to give up but I would repeat the same verse over and over in my head as I ran, "I can do all things through Christ who strengthens me". And I realized....I could.

So as the marathon drew near, I just decided to stop worrying about if I could do it and just accept the fact that I couldn't....not on my own, anyways.

The morning of the race, it was a bitter 25 degrees; a huge shock from the semi-cooled environment of my home gym. As I stood there waiting for the race to begin, I felt like my legs were going to freeze and break off. It dawned on me at that moment that it might have been a good idea to do a couple of runs outdoors, just to help my body get used to the elements. Nice thought, but a little too late. Thankfully, a few miles into the run, I discovered that your body adapts to the cold weather as your core temperature goes up from physical activity. It was for this reason, I was thankful that I did not take my mother's advice and wear two pairs of pants (thanks anyways, mom).

I remember when I saw the sign that said, "10 miles". I looked up at the sky and said, "Thank you, Jesus!!". I knew that I was in the homestretch and the finish line was just three miles ahead. I had estimated that it would take me about 2 hours to finish (per my finish time in training) and I had already informed everyone that I would be highly irritated if I went over 2 hours. I had no idea how long I had been running, but I knew my pace was about 8 1/2 minutes a mile. I kept trying to do the math in my head to determine my finish time but gave up after about 2 seconds. Another tidbit I learned--the brain doesn't do math during intense physical activity.

And then, there it was. Mile 13. I ran faster than I've ever ran in my life, knowing that my family was waiting to greet me at the finish line. Unfortunately, as I finally completed the half-marathon, I immediately came to a stop and my noodle-legs almost gave out from underneath me. I suppose this is why olympic runners always run at a slow pace after completing their runs. It is to avoid noodle-legs. I got my medal, got some pats on the back and left smiling. I had done it. A year's worth of blood, sweat and tears and it was over. My first thought was....now what do I do?

I went to check my results and was ecstatic to learn that I had run the half-marathon in an hour and 55 minutes, five minutes faster than my goal. Although I would love to say, "I did it!"; I know that I didn't. Because if there's anything I learned through all of this, it's that I can only do it because He is beside me. As inspiring as it was to have so many people cheering us on as we ran, to see the children of St. Jude's waving at us as we passed and to see the thousands of people that came out to support such a wonderful cause; the thing that inspired me the most was the music streaming through my IPOD. A collection of worship songs, reminding me that it's my body but I'm His vessel.

So maybe that sounds like a really spiritual way to describe running but that's just what it is for me. And maybe, like my husband says, I am addicted to it. But it's just my thing. I'm not athletic, I can't even follow a football game that well on T.V, but I can run. And I'll keep on jumping out of bed three mornings a week, desperately excited to hit the treadmill. Because as cheesy as it may sound, it's my time to push away the world and run towards Him.

The Potty

2009-11-23T20:53:00.003-06:00

Oh the potty. The dreaded, full-of-drama potty.

Ever since Talks-a-lot was two years old and in the fight of his life to NOT be potty trained, I have been dreading even going close to another potty with another child. I fought tooth and nail to get my little Talker to warm up to the idea of going to the bathroom like a "big boy". The problem was, he just didn't care. He was too busy, Thomas the Train was always calling his name, the outdoors were too appealing to pass up....who wanted to be bothered with bathroom stuff? I can remember asking him, every 15 minutes on the dot, "Talks, do you need to potty?". If I waited a minute too late, he would just go without warning and give me this look as though to say, "Why didn't you tell me that was about to happen?". After a full year of complete stress and frustration, the job was finally completed and I could rest my worries that he would not, in fact, wear diapers for the rest of his life.

Enter my girly little Chunks-a-lot. I, honestly, haven't really bothered with the potty issue that much with her. We've had, ahem, bigger problems at hand with her ongoing medical drama. So as life has resumed its normal pace and she seems to be a normal, thriving toddler, I have decided it is time. Time to potty. Little did I know that my sweet, innocent little Chunk has been storing away some big, nasty drama just for this little lesson in bathroom abilities. So you can imagine my surprise the other day when I mentioned "big girl panties" and watched my smiling, giggling little girl turn into a sobbing mess. I was finally able to convince her to at least try it (thanks to her stuffed puppy who talked her through it) and so our day began.

She actually seemed to enjoy the potty, smiling away and constantly talking about the business that was going on below. I wasn't sure if anything was actually being accomplished on the potty, but her eagerness encouraged me. And then I made a huge mistake......I tried to take her off the potty. After about 35 minutes of sitting, I decided that she should take a break and went to lift her up so she could play for awhile. She suddenly had a full-body hold on her little potty and refused to budge. I literally had to pry her off the potty as she screamed in protest.

Then came the crying. For the next three hours, as we continued this potty "dance", she cried without ceasing. She wasn't upset that she couldn't wear a diaper, wasn't even upset that I wanted her to try something new, no, she just didn't want to get off the potty....ever. In fact, one time I just decided to let her sit there and see how long she would actually last before she realized how boring it was. To my complete amazement, she happily sat for such a long period of time that she had an imprint of the potty on her little bottom. The will of that child is amazing.

In the beginning of her three-hour crying session, I had already decided that I was not going to let her sobs get to me. I was doing her a service by making her take a break from the potty and if she wanted to cry about it, that was okay with me. But as I continued about my chores, talking to her as she followed me around with her sobbing moans, I started to feel a little edginess creep up into my spirit. It's amazing how something can affect you even when you are determined to block it out. I finally put her in her room and told her that she could come out when she was done crying. I shut the door and went back to my laundry in the next room. The first thing she said between her lonely sobs was, "No, mommy, don't leave me in here with Swiper!". As sad and cute as that little comment was, I held my own. Impressive, I know.

I finally decided to set a timer for on the potty and off the potty. She would sit, I would put the timer on for six minutes and when it would beep, we would yell, "Potty break!". Then, she would immediately stand up and I would set the timer for a 12 minute break. But she was so anxious to get back on the potty that she would sometimes just circle it, nudge it with her foot, try to count down with the timer and once even tried to make a beeping sound in hopes I would be tricked into thinking the timer had gone off. She can be very clever when she wants something. I also tried bribing her with treats. Yes, I bribe my children, it's awful and I know it. But I was inspired by this post and decided to try some Dora the Explorer fruit snacks we had picked up at Walmart. To my surprise, Chunks (lover of most foods) does not like fruit snacks, even if they do have Dora's face on them. So instead of eating them, she would lick them a few times, make a sour face and just hold them lovingly in her hands. But what surprised me the most was what we used the snacks for. It didn't become the persuasion tool I had dreamed of to lure her onto the potty, no, it became the bait to get her off the potty.

All in all, we had seven successful potty episodes that day and only one accident, so I suppose that is a decent first attempt. But when I started running the numbers in my head, I realized that she had a bit of an unfair advantage considering her on-the-potty time far exceeded her off-the-potty time. But I suppose in situations like this, you've just got to take it as it comes.

And as frustrating and odd as this potty-training experience has been, it sure beats the battles we were fighting last year at this time. And I am so thankful for that perspective in life as I go about trying to raise these little ones. Sometimes I sit back and think of the endless days and nights in the hospital, the constant sickness from chemo, the countless blood transfusions and I think, "Potty training?! Walk in the park!". And while it's not (obviously), it's just a blessing to be frustrated by something so absolutely and wonderfully normal!

Although, you might ask me again tomorrow to describe potty training in such positive terms and I might not be able to deliver...

Just life

2009-11-09T20:51:00.005-06:00

So I might just have been a little lazy lately on my postings but it's really not my fault. Seriously, life makes me dense sometimes. There are all of these funny things that happen throughout my day but by the time I get around to the computer, my mind is completely blank. I'm not sure how that happens. But we have had a lot of big things happen lately. First, Chunks had her three month follow-up MRI at St. Jude's last week. We weren't quite as nervous about this scan because the child is just thriving daily. Usually if she doesn't give me a reason to worry, I try not to look for one. So we were happy (and not surprised) to hear that her tumor is, once again, stable and has not grown or spread. We also got some interesting news about her growth. She may be growing "out" but she's not really growing "up". She seems to only grow about a centimeter every 4 or 5 months which is much slower than an average toddler. They did some blood work and tests while we were at St. Jude's this past visit and discovered that she has an almost non-existent level of growth hormone in her body. Because her tumor is close to the pituitary gland in her brain, it is apparently blocking the release of some of her growth hormones. So we were informed that she would most likely be a "little person". That was a little shocking but I kind of figured it wasn't the worst thing in the world, either. They also told us to be on the look out for puberty. Puberty?? She is two! But apparently it is very common for children with tumors in her location to experience an early onset of puberty. We visited with an Endocrinologist about this issue and his exact words were, "Be on the look out for breast nubbins". I am not sure that "breast nubbins" is a medical term in any way, shape or form but it at least brought some humor to the disappointing situation. My husband was very disturbed by all of this talk and had some questions for me later. My favorite was this, "How will we know if she has nubbins? Do they look different than just chubbiness?". I assured him we would "just know". Even though some of this news was a little hard to swallow, we are just thankful that she is medically stable and is doing incredibly well at this time.

Another milestone we experienced is our 8 year wedding anniversary. It's still a little odd to me that we have been married for eight years. There are days when it seems like we just got married a few months ago and there are other times where I'm sure we've been married at least 30 years. We didn't plan much for our little day but we were sure to leave both kids with the grandparents. In my opinion, when you've got children, the best "date" is just a day where you can have complete and utter uninterrupted conversations! We had a great time and I am thankful that God has sustained our marriage for these past eight years. I can guarantee you we would be nothing without Jesus Christ in our lives.

Talks-a-lot has been doing great and is thriving in school. He constantly battles with his urge to talk incessantly and has been burdened with man genes. Bless his heart, he just has the hardest time focusing sometimes and it can really become a frustrating situation for both of us. For instance, I can look him in the eye, tell him to take a shower and brush his teeth, get him to repeat it back to me and by the time he has reached the top of the stairs he cannot remember why he went up there. It happens every night....no joke. So I have been feeling the strain of trying to understand the mind of a boy, it can be a maze in there at times. Fortunately, what he lacks in focus, he makes up for in personality. He is quite possibly the funniest, most compassionate child I have ever been around.

We also did the Trunk or Treat thing at our church on Halloween and it was a blast. Talks-a-lot wanted to be Obe-wan Kenobe so I decided that Chunks would be Princess Leia. They didn't really have a costume in her girth and height combination so I just had to get creative. I basically just made a belt out of a strap of leather and put it around an over-sized white shirt. Because she doesn't have a ton of hair, the braids were also an issue. After being creatively inspired by my own little Chunky Monkey, I made Princess Leia hair out of a headband and six pairs of knee-highs. I feel like I got a little too obsessed with it as I found myself sewing and braiding panty hose at 9pm the night before Halloween. Here they are posing for me:

So all in all, I have no deep thoughts at this time and no heart-warming stories. Life is just life sometimes and that's actually okay with me. There's been so much drama encircling our lives the past two years that I am perfectly fine with the mundane. But really, when you've got two of the most energetic, quick-witted, talkative children on the face of the planet, it's really anything but mundane. I'm blessed to be so entertained in life!

The knight in shining armor

2009-10-20T21:12:00.004-05:00

I was reading an update earlier today about one of our fellow St. Jude friends who is also battling brain cancer. Unfortunately, at the end of his treatment, his "end of treatment MRI scans" showed that his tumor had grown and spread. The family was, understandably, devastated and have gone on to endure more radiation treatments in hopes of fighting this thing. Their son is actually doing extremely well and they are just leaving his future in God's hands. A similar story to our own, only we have not received any bad news on scans in a long time...for which we are undoubtedly thankful. But what got me about the story of this little boy is their most recent update. He just had his three-month scans and they came back "stable". Although this appears fantastic news to most people, in the world of cancer, it's really not. His mom voiced her frustration with the results and I completely understood her emotion. People often comment to me after we get stable results from Chunks' scans, "Well now you can celebrate and rest easy!". Um, no. Because who could ever really "rest easy" when they know their child has a monster in their brain just waiting to attack? It's this constant feeling of wanting something to change. Let it grow so we can try to kill it, let it shrink so we can believe in something concrete, let it just disappear so we can finally claim that miracle. But instead it just sits there, flirting with your fears, toying with your emotions, constantly forcing you to face the looming statistics. Sometimes this waiting game is almost worse than when you're just in the thick of it. I can vividly remember getting this huge adrenaline rush whenever we would get bad news. It wasn't that I thrived off of the horror of the situation, it was more like I got my game face on and I was ready for battle. We were going in to fight this cancer, we were going to give it all we had and God was going to sustain us through it all. And we did.....and He did. And as thankful as we are for the dormancy of those cancer cells, I'll just be honest, I won't ever rest easy until that tumor is defeated. I always picture a knight going into a castle to rescue his awaiting princess but first he has to get past this horrible dragon. Would he be satisfied to pass if the dragon had just fallen asleep for a bit? Would he be so brave to continue on knowing that the horrible monster could awaken at any moment? This is where my struggle lies.

As I have been mulling over this, it occurred to me that God already knew my internal battle. I have a feeling He has been trying to teach me a few things for awhile now, I've just been resistant to His lessons. I'll be honest for a minute, sometimes I tire of learning these lessons because it forces me to break through my skin and grow. And growth, as pleasant as the end result might be, is just not always a fun thing to experience. But I realized something about my story that has changed my perspective on all of this. As much as I envision myself as this knight coming into a castle to rescue my precious little Chunk, that's just not how the fairytale goes. I can put on all the armor I want but I will never succeed in getting past that sleeping dragon. For it was never my role to be the knight in shining armor, I'm trying to replace Someone who is waiting for me to step aside. Jesus Christ is her protector, the valiant One that will come to her rescue and save her. And what's more humbling is that I'm not even the soldier by his side in this story, I'm the maiden in the far away room, comforting the princess as she waits for her warrior. I'm not supposed to save her. That might be such an obvious thing for most people but it's been a huge discovery for me. The problem is, I just want to fight, I want to go into this battle running and in that effort I push aside the real hero. For if I am the lead then what does that leave Him? She is ultimately His child, more than she is mine, and it is simply my job to guide her, love her, care for her and stay by her side through all the ups and downs. I can fight for her in spirit, believing against all odds that her body will be healed, having faith in a miracle that most doctors do not believe exists. But I cannot defeat this cancer, I cannot rid her body of this tumor, I cannot fix her. And for some reason that fact sends me to my knees as I realize how powerless I really am in this situation. I somehow think God wants us to embrace our weakness so we can finally understand that this life is just impossible without Him. So, as hard as it is and as much as it hurts, I'll step aside. I will treasure the role God has given me as her mother and I intend to pour every ounce of myself into it. But I can step aside with peace knowing that we'll be waiting up here for Christ to come in and save us. Knowing that He will come in running to slay that awful dragon, sending it to the pit of hell where it belongs. Finding comfort in the fact that at the end of this story, either on earth or in heaven, He will rescue her.

What a difference a year can make

2009-10-08T20:45:00.007-05:00

I was looking back at some pictures today on my computer and came across something that literally brought me to my knees. As much as I do remember from St. Jude's, as fresh as my memories still are about the daily battles we fought, somehow I had forgotten just how sick my little princess really was. And as sad as that memory is, it's also amazing. Amazing because to look at her just twelve months ago and compare it with today, you would have to conclude that her health and her life is an absolute miracle. I know I talk about this all the time but I'm still in awe over the journey Jesus walked with us and the light we have seen at the end of it all. For here we were a year ago at the end of September, in the midst of horrible chemotherapy, sometimes daily blood transfusions and constant sickness:

And here she is today, a year later, happy, healthy and thriving with every step.

How can you not believe in miracles after just simply looking at this picture. Look what God has done in just twelve months. The tumor might still be there, her future might still be unknown but for today, in my book anyways, she is healed!!

Running for a cause

2009-09-26T10:31:00.005-05:00

Have you ever wanted to help support something that truly makes a difference in the world? Well, here's your chance. As you know, St. Jude's has played a huge part in our lives over the past year that our little Chunk has been a patient there. I know a lot of people have seen their commercials or telethons, radio-thons, etc., but I am not sure most people realize how amazing this place really is. Let me just tell you. They provide families with free housing in a place called the Target House, which is just 7-8 minutes from the hospital. The Target House is, by far, the most amazing place I have ever been to. They have a decked out playroom for the little kids, an amazing outside playground, a music room that is complete with every different video game system you can possibly imagine, a state of the art workout room, a pool table, dining hall, a constant stream of celebrity guests and individual apartment-like rooms for the families. They provide free shuttle service to all sorts of different places for those who do not have their own form of transportation. They give you a Kroger grocery card worth 100$ each week or a meal card if you are inpatient at the hospital. Their food court is amazing and includes but is not limited to a fish bar, mexican bar, gelato station and weight watchers selections. They provide any and all prescription medications at no cost to the patient as well as complete medical care at no cost. And, well, that's really just the beginning. I mean, I could go on and on about this place, it is simply amazing. And here's the thing, in the midst of all of this they have the top researchers desperately trying to find a cure for childhood cancer. They are constantly making huge advances in the world of medicine and their passion for these kids is astounding. Because they provide all of their services free, fundraising is their main avenue for income. Here is where you can make a difference. There is a marathon coming up in December called the Memphis Marathon. It is a fundraising effort for St. Jude's and goes right to the research that is needed to find a cure for these children that are battling through cancer. I signed up for the half-marathon, which is 13 miles, and have been training for about six months now. I have a fundraising page and you can donate to St. Jude's with just the click of a button. It is fully tax deductible and you also have the privilege of knowing that you are helping children just like our little Chunks-a-lot. So, whether it's just a couple of dollars or 50 dollars, it doesn't matter....every penny helps. Please check out our fundraising page and help make a difference! McKaylee's Miracle

The mosquito

2009-09-21T20:24:00.004-05:00

Sometimes God works in small ways, not always the big, obvious, in your face kind of thing....no, sometimes it's something so simple and subtle you can just about miss it.

Throughout this journey through sickness with my little Chunks-a-lot, God has shown Himself to me in enormous ways. The fall off the bed that led to the discovery of her tumor which, in turn, actually saved her life. Yeah, that's pretty big and obvious and humbled me to my core. And there were countless things, too many to list, that happened while we were at St. Jude's that were undeniably the Hand of God intervening on behalf of our little girl. But as I get lost in the everyday ho-hum of this new "normal" life that I have come to know, sometimes I forget to notice the little ways that show me how very present Jesus Christ still is in our lives.

My little Chunks-a-lot has a problem. Well, she has many but this particular problem involves a particular annoying parasite. The dreaded mosquito. She seems to have some sort of over-reaction to the bite of a mosquito; I have been told this is called "Skeeter Syndrome" but I'm not sure how accurate that really is. Well, skeeter syndrome or not, when she gets bitten, an enormous welt appears and can grow to be as big as her little hand. The bite actually bubbles up so big that it eventually pops and leaves a scar behind. The itching she experiences is extremely intense and actually brings her to tears. A mosquito bite is, therefore, a big deal in our family. Being unusually attracted to her, if I see a mosquito around, I go nuts slapping my hands together, trying to kill and destroy. Yes, I can get quite intense when someone or something tries to mess with my children.

Last week, my husband noticed a small mosquito that had somehow made its way into our home. We spent a ridiculous amount of time "hunting" this tiny insect, but to no avail. I actually got angry about the situation knowing that it would find its way up to her room and attack her while she slept. I am not just imagining the worst case scenario, this has actually happened before....just so you don't think I am totally nuts (debatable). We finally gave up trying to win this battle against the sneaky mosquito, put the children to bed and plopped on the couch for a movie. As ten o'clock rounded the corner, we decided to clean up and call it a night. As I was going around picking up left-behind toys and library books, I noticed my husband's ice cream bowl still sitting on the floor by the couch. He had devoured it, so nothing was left but the sticky residue that now lined the bowl. I reached down to pick it up and a smile crept upon my face when I looked inside. That pesky little mosquito in all his greediness had gotten himself stuck in the ice cream residue inside the bowl and had died there. And it was kind of one of those moments where you don't say anything out loud because you really can't put into words what it is you're feeling.....but it's something. And for me it was this odd feeling of knowing that God was still protecting her. And maybe that sounds silly, I mean it was something as simple as a mosquito, but to me it was just a reminder. We might be far removed from the battles we fought at St. Jude's and we might not fight through every day the way we used to but that doesn't mean that He's not still there---watching.... guiding....protecting. And it made me realize how often little things like this probably happen all the time and I just don't even notice them. My life is too normal, she is so healthy, things are so simple now and I don't look for the presence of God the way that I used to. But He is still there and I felt like He wanted me to know that. For in the hard days, He came to our aide in the form of peace, healing, comfort and mercy and those moments in my spiritual walk have changed my life forever. I mean, He was there, He was with us, He was holding our hand each step of the way and we knew it. But now as we settle back into our routines, as life becomes busy and our biggest fear is potty-training, we might not feel that overwhelming presence; but only because we sub-consciously think we don't need it as much anymore. And I think it's just awesome that even in our every day lives, He's still there watching over us. Sometimes giving us little reminders that He is not just watching over us during the darkness, but He's protecting us in the light, as well.
" Because you have made the LORD, who is my refuge, Even the Most High, your dwelling place, No evil shall befall you, Nor shall any plague come near your dwelling; For He shall give His angels charge over you, To keep you in all your ways. In their hands they shall bear you up, Lest you dash your foot against a stone. You shall tread upon the lion and the cobra, The young lion and the serpent you shall trample underfoot. Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, And show him My salvation.” Psalms 91:9-16

The power of pain

2009-09-03T21:00:00.004-05:00

As much as you would think this wonderful normalcy of life would help me forget the tragedy of cancer that still surrounds me, I just can't seem to let go of my memories, my fears and my pain. There is not one day that passes that I do not consider the sobering reality that I might lose my precious little girl one day. I know that sounds pessimistic and probably a little depressing, but it's true. I look at her, at her smile, her beautiful blue eyes, her chunky little rolls and it just hurts my heart. I often think, "How long do we get to keep her like this?", so happy, so healthy so amazingly "normal". The other day while Talks-a-lot was at school, I dropped Chunks-a-lot off at her grandma's house so she could play. I had some errands to run and was a little excited at the prospect of actually having some alone time. But for some reason, as I sat in my car, the silence overwhelmed me. All I could think about was, "this is what it would be like to not have her". No laughter coming from the backseat, no imaginary princesses, no made-up stories about butterflies....just utter silence. I got really choked up and a little irritated that I was experiencing this rush of emotions. It was my time and I thought that meant escaping reality for a moment and refilling my "mommy patience meter". Instead, I found myself face to face with the reality that I often deathly fear. The pain was overwhelming, the lump that formed in my throat seemed to almost burn a hole in my breath, tears streamed down my face as I quietly questioned God's timing on allowing me to feel this pain. I guess there's a part of me that thinks I should get to control when I feel things. I often think, "We've been through enough, we need a break.", and as true as that might be, God's intentions for allowing pain in our lives is for our good.....and ultimately for His glory. This is a concept I have wrestled with a lot lately. How can something be for God's glory if it physically and emotionally hurts so badly? How can this glorify Him? And the answer to this question came to me in a way I would have never seen coming.

Talks and Chunks-a-lot had been playing on an indoor playground at Chick-fil-a the other day and after making many climbs up the plastic slide, Talks-a-lot had quite an impressive raw spot on both of his knees. Later that evening, as he got in the shower, I heard a yelp followed by loud crying coming from our upstairs bathroom. I ran up to see if he was okay and realized that when the water from the shower hit those raw spots on his knees, it burned and he was not too happy about it. With much whining and moaning, Talks-a-lot made it through his painful shower and had a bone to pick with me afterwards. He told me that he wished he didn't have to feel physical pain. I understood this remark but reminded him that pain helps to alert us that there is something we need to pay attention to. A strained muscle alerts you to take a break from exercising, the pain from breaking a bone helps you to make the decision to go to the hospital, and on and on the examples go. Talks-a-lot did not seem satisfied with this response and kept pushing the fantasy of not having to feel anything. The conversation went back and forth for awhile and finally I said, "God created us this way for a reason. He knew that we needed to feel pain to help us......" my voice trailed off. Have you ever seen someone throw a brick into somebody else's face? Neither have I, but that is exactly how I felt at that moment. Boom....thud. It just hit me like a ton of bricks. All of this pain and trauma that God has allowed in our lives is for our own good. To shape us, to change us, to bring us into a closer communion with Him. And maybe that all sounds like a "sunday school answer" but it's not. I can look at my life before all of this happened and compare it with life as I know it today and there is a stark contrast. God has managed to gain my vulnerability, my trust, my faith and my conscience. And I believe that the tragedy we are going through right now is the only way any of this could have been accomplished. And as much as it hurts, as much pain as it brings to my heart, I know that one day I will look back and see how God used this pain to forever change our lives. Sure, it has broken us down, made our hearts grow weary, created a raw spot, but this pain makes us keep fighting. It reminds us of the battle we are in, it keeps us from growing too content in our everyday lives, it always leaves us hungry for a deeper walk with Christ. We are weak with this pain, we are fatigued from this fight and that is just how He wants us. For in our weakness, He is strong. It's like I finally understood what that means and it sent chills down my spine. He allows this pain to bring us to Him so we can share in the beautiful eternity He has created for us. And in that reality, there is love in the pain He allows and something about that comforts me.
As I sat back with this brick of knowledge that God had so creatively placed in my lap, I felt so thankful for this journey. The tears and pain it has brought will never compare to the lives it has changed, mine included. What's a little raw spot if it means you get to follow your Savior home?
This pain has created weakness in my once-thought ability to be self-sufficient and so I turn to Him. Knowing that there is no way I could ever do this on my own, finally realizing that His strength, His grace, His mercy are made perfect in my pain.
"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." II Corinthians 12:9

Earrings and a new puppy

2009-08-24T20:41:00.006-05:00

So two big things have happened in the past few weeks. First, Chunks-a-lot got her ears pierced!! Although she had absolutely no idea what it meant to have her ears pierced, she just beamed at the idea of having "earrings just like mommy's"! I was a little apprehensive as I held her in my lap in the "ear-piercing chair" at a Claire's store in our local mall, but I knew she would be delighted at the final product. We picked out some cute pink, flowered earrings and away the lady went with her ear-piercing gun. The whole situation lasted less than a minute and Chunks started crying immediately, but the moment we handed her a mirror and she saw those sparkling earrings in her ears, the tears just melted. She was so proud of herself and showed off her new earrings to anyone that looked her way!

Although it was exciting just for the fact that it was a little milestone in her life as a girl, it was also exciting for a different reason. Just the fact that her immune system was strong enough for us to even consider this was enough to delight my soul. A few months ago, ear piercing would have been out of the question as it would have put her at risk for developing an infection which could have landed her in the hospital. Unfortunately, when you are on chemotherapy, life just doesn't get to be normal. And as silly as it might seem to be overjoyed at something as simple as pierced ears, it's just another wonderful thing she gets to experience in her newly-normal childhood!

Our second big thing that has happened recently is we got a brand new, baby puppy. My mom and I have been tossing around the idea of getting a puppy for awhile, but never seriously pursued it. I mean, you've got the potty training, the crying at night, the chewing on everything, all of the stuff that can drive you crazy with a new little pup. Not to mention that I am currently "life-training" a toddler which entails many of the same lessons, potty training, crying at night.... maybe not so much the chewing thing. Well, blame it on puppy-fever but at some point we changed our minds and just randomly decided that we were ready. My husband didn't really seem too bothered by our decision because my mom and I had already decided that we would share the responsibility of the dog. That way, neither one of us would get too overwhelmed with the day-to-day care of a new puppy. So last week we got a 6 week old little girl and named her Bella. She only weighs a pound and a half and is probably the smallest dog I have ever laid hands on. Talks-a-lot loves her because she will snuggle up in his lap but also loves to pounce on her toys which absolutely brings him to tears with laughter. Chunks-a-lot, on the other hand, started off adoring her but has now decided that she is scared. It all started the first time tiny little Bella discovered Chunks-a-lot's tiny little toes. Then she discovered that biting them was just as enjoyable as looking at them. This led Chunks to believe that Bella, her adored puppy-friend, was going to actually eat her. So constantly throughout the day I am having to remind my little Chunk that she will not get eaten by a one pound puppy.....I've yet to convince her.

But again, as exciting as it is to have a little puppy in our house again, I'm just overjoyed that we are at a place in our lives where this can be possible. No fear of germs, no fear of sickness, just enjoying the simplest things that I used to so often take for granted. And at the end of the day as I look at my beautiful daughter, earrings in her ears, running from her toe-eating puppy, it brings tears to my eyes as I watch her finally enjoying her childhood for what it is....for what it always should have been. They might just be earrings and a new puppy, but they're such a reminder of the beautiful miracle of life that God has blessed us with.

"Daddy Dizzle"

2009-08-10T20:05:00.007-05:00

**Disclaimer--this post is in no way, shape or form meant to poke fun at any culture, race, ethnic group or any other group of people whatsoever. I do not judge or look down on any person or person(s) who might choose to use the following "lingo" as a part of their everyday vocabulary. Also, this post is quite full of "quotation" marks...***

Okay, I've admitted it before, I am not always the best parent. And it's not for the reasons that you might think, I say this because I sometimes find myself giggling at things I shouldn't.

A little history first, I often poke fun at my mother.....can you believe it?! I find it quite entertaining to introduce new phrases to her and get her to repeat them. They always involve some sort of "street lingo" or slang that requires a certain air of roughness to pull off. For instance, the word "holler" which actually sounds quite southern, has now become "Holla" in some social circles. My mom (also known in this blog by the name Chocolat) had quite a hard time throwing down a good "holla" and it became a big joke. Talks-a-lot happened to be present the first time I got Chocolat to say "holla" and he found it so hilarious that he would shout it out quite often. Sometimes not at the best moments. I also introduced a variety of other phrases which include but are not limited to, "true dat" and "most def". Now, let me be sure to say that I actually do not use these words/phrases on a daily basis as part of my vocabulary but what I have found is that when little ears are listening, things get repeated. So as Chunks-a-lot has come along and gotten a bit older, she has decided to participate in these fun times.
Recently, Chocolat and I were discussing the trend of adding "izzle" on to the end of different words. Like, "for rizzle, "down at my hizzle", "for shizzle", "you're the bomb bizzle". I got Chocolat to say a few of these choice phrases and the kids found it very entertaining...as did I. Now my husband, Lips, does not always find this stuff amusing as this type of jargon makes no sense to him. And, understandably so, he sometimes gets onto me when he hears Talks-a-lot walking around yelling out, "Holla, true dat!". So knowing this, we put the kids up to something. We told them to greet daddy that next day with a "Yo, yo, yo Daddy Dizzle, you're the bomb bizzle!". The next day as he hugged both of the kids, they let it lose on him. Of course, Lips gave me the "eye" but smiled and giggled with the children as they "izzled" him to death. Unfortunately, this "izzle" business has continued and seems to be worsening. And I am sure it has nothing to do with the fact that I turn red with laughter each time I hear it. The icing on the cake? Little Chunks-a-lot in all her chubby glory has now started frequently calling her daddy, "daddy dizzle". And as much as he would love to shake his head at me in disappointment, who could really resist giggling at something like this:

The terrible somethings..

2009-08-07T19:06:00.007-05:00

Sometimes as I rock my little Chunks-a-lot to sleep, I rest my hand on her hand, gently running my fingers through her hair as her eyes become heavy. As weird as it might sound, I often think about how there is something inside of her head; this tumor, this malignant mass of cells and it almost makes me nauseous just thinking about it. It drives me crazy to know that this tumor is just sitting in there, invading her precious little brain and I can't do anything about it. I can't see it, feel it or control it, yet I have to live with the fact that it could actually take her life. It really drives me crazy.

A few weeks ago, our little Chunky Monkey started displaying a change in personality. She became irritable, angry, had emotional meltdowns at the slightest provocation and we were concerned to say the least. We have been told countless times by her doctors to be on the look-out for any type of behavior or personality changes, as this could indicate tumor growth. The days seemed long and stressful as we tried to deal with her behavior and seemed to get nowhere. I felt torn as a mother. I know the correct way to discipline a child and I understand how important it is to implement strong rules and boundaries from a very young age, but how could I be firm with her when there is this awful chance that her behavior was completely out of her control? I went day to day, back and forth with my emotions, never really knowing how to respond to her outbursts and feeling a constant mix of frustration and compassion for her. Fortunately, she had an already scheduled MRI scan at St. Jude's set up for August 6th. I was somewhat relieved to know that at least by then I would have some answers as to what was going on with these changes we saw in her.

It's interesting how much lighter I felt when we got the results back from her MRI scan. My level of stress and frustration went from a 10 to a zero. She was fine, the tumor was stable, nothing had changed. I have never been more excited to admit that my little Chunk is going through the terrible two's!!! I kind of wondered if that's what was going on with her sudden "behavioral changes" but we just couldn't be sure. Now that I know she is only acting out for the simple fact that she is a toddler, it has become much easier to handle. I never thought I would look forward to dealing with these hard years again, especially after Talks-a-lot really put us through the ringer during his toddler years. But I find myself embracing these difficult days because they are absolutely and perfectly normal! Even today as she fell into one meltdown after another, I found myself smiling just a little bit each time. Not because it was funny, because (trust me) it wasn't, but because she is being the little 2 year old that she is supposed to be. She's mischievous, a little sneaky, emotional and opinionated and I love every bit of it. As long as she is healthy and that monster of a tumor within her stays asleep, then I can handle the rest. She may really put us through it some days but I'll still go to sleep each night with a smile on my face. Not because the day was easy, not because her attitude was pleasant, but simply because, in my opinion, everyday that is normal is nothing short of a miracle.

The End

2009-07-23T21:44:00.004-05:00

Thirteen months ago we started here....with her very first chemotherapy infusion...

And today, July 23, 2009, we have finally reached the end of Chunks-a-lot's chemotherapy treatment!! Despite our most recent ups and downs, we are so thankful for God's constant grace and mercy in our little girl's life. Praise God for this wonderful day! She is and always will be our little miracle....
Congratulations my precious Chunk!

Walking in the darkness

2009-07-21T20:49:00.006-05:00

She looks at me with the face of an angel and I cannot help but get lost in her beauty, in her innocence. She needs me, depends on me and knows nothing more than being carried on my hip, even at a chunky 27 pounds. And as heavy as she gets, I don't put her down, as much as she blossoms into a toddler, I still see the face of a baby....my baby. So as she laid in my bed the other night, crying out in what seemed like pain, clutching constantly to my arm.....what could I do? She just needed to know I was there, every hour or so she would grab onto me and pull me into her tight embrace. I woke up the next morning in tears, after two nights of enduring her crying and restlessness, I found myself in an eerily familiar place.
Over a year ago, we went through this. My little chunks-a-lot would spend every night for weeks on end crying all night long, waking up constantly in pain, always searching for mommy's hand or finger....just something to know that she was not alone. It would be months before we knew why she was living with so much pain, that the monster of a tumor in her brain had grown, pushing on the delicate structures of her brain. I can only imagine the misery she was enduring.

So as we have gotten lost in the beauty and normalcy of life lately, a part of me has been happy to temporarily forget those hard days. But what I realized as the shadow of fear reared its ugly head again is that as much as I smile, as much joy as I feel deep inside of my soul, those emotions and that pain are still just lurking beneath the surface. It only takes a night or two of watching my little girl struggle to completely tear me apart. I thought at first it was a lack of faith in Christ but I think it's really that I am just tired of watching her suffer. I just want life to stop for a minute, just stop and let us lose ourselves in the beauty of the world around us. Let us enjoy this time that we have, let us be freed from the fear and the anxiety that abounds in this vicious journey through cancer.
My fear is that we are starting all over again, starting back at square one down a road that we've already traveled and hoped to never travel again. Yet I know that He can heal her, He can relieve her from the pain she is experiencing, He can be her peace. It's just the unknown that kills me. Never knowing when to worry, when not to, when something is a signal of a greater problem and when it's not. And I never want to look back and wish I had worried more about something, or even worried less. And whenever I find myself overwhelmed with the fragility of my little girl's life I feel like another piece of me floats away. Lost forever in the pages of this story, yet somehow belonging there anyways. I think sometimes I almost have to be empty to allow Jesus Christ to take over. Sometimes I have to be trimmed back almost until it hurts to grow even a little bit. I see how He always takes the hard times and uses them to teach me about faith, hope and trusting Him regardless of where I stand.
And I think that the unknown, even though it kills me, forces me to give this life to Him. It forces me to admit that this is not my story to write, regardless of how many times I try to pencil in my own chapters. I could have never predicted the road we would go down, the lessons we would learn and the heartache we would experience on this journey. But He already knew it all. And whether we be standing joyously in the light or grasping for peace in the darkness, He sustains us with His constant presence and grace.
So just as she clutches onto me as she struggles through the darkness, I will cling desperately to my Savior. For I realized, she needs me the way I need Him. Searching for comfort, seeking some relief, just finding peace in the fact that I can grab onto His hand and know that I am not alone in this. And I'll keep giving her all of me that she needs, knowing that He will fill me back up each time that I am empty.
"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them."

The shallow side

2009-07-09T20:28:00.010-05:00

Okay, I'll be the first to admit it....I have not been a very deep thinker lately. For the past year of my life, I have spent endless hours in deep thought. With the constant worry that came along with Chunks' chemotherapy treatments, endless blood transfusions and constant sickness, I spent a lot of time thinking about a lot of things. But since we have come back home, I have noticed that my deep-thinking days are few and far between. My days are spent corralling two insanely energetic children while trying to balance all my other duties as a "house wife". And as busy and stressful as it might be, I secretly think it is awesome because it is so normal!
My deepest and most worrisome thought today was whether or not I was going to have time to grab some milk from the store. Yes....I am serious, I consider that a deep thought at this point. And as much as I would really love to catch up on our errands, mop my floors and scrub out my bathtub, we've been busy doing other things. My little Chunks-a-lot got her central line pulled out a few weeks ago and it was replaced by a port under her skin. And because of this, now my precious little Chunky Monkey can swim, jump through a sprinkler, spill juice down the front of her shirt and get completely wet and dirty without the need for an immediate intervention also known as a bandage change. So, needless to say, we've been avoiding deep thinking lately and have been content to stay a little more on the "shallow" side.

The Spider

2009-06-29T21:35:00.001-05:00

It's amazing how God will use the simplest most inconspicuous things to teach us huge lessons about ourselves. Lately, God has been using a spider to teach me something that has been hidden deep within me.

So there's this spider that lives outside the window that is above my kitchen sink and I have come to grow quite fond of it over the past several months. I'm not sure when she decided to make my window her home, but one day I noticed her while I was washing dishes and it became a habit to stare at her several times a day as I did my kitchen duties. Most of the time it was just out of curiosity as I, honestly, have a huge fear of spiders and anything spider-related. But I found her fascinating as I watched her spin her web, sometimes adding to it, sometimes changing the shape but always working with a mission in mind. Soon, it became obvious that she was pregnant as her belly started to swell and her movements slowed down. I checked her web several times every day while I washed dishes and she was still just sitting there, as big as ever. One morning as I was washing out Chunks-a-lot's sippy cup, I quickly gazed at the spider's web and there it was; a brand new shiny, white sack full of tiny spider eggs. I couldn't help but smile as there was just something amazing about the work she had done to her web to protect her precious babies. Weeks have passed since then and now the eggs have hatched, but the baby spiders still remain inside the silken ball, waiting......what for, I'm not really sure. But I have noticed how much more aggressive the mother spider has become since she's laid her eggs. If another spider comes close to her web, she strums her legs on the thin strands of her home as a warning to "stay away!". She feels a sense of urgency to protect them, her instincts jump when she feels there is danger somewhere close by. Granted, she is just a spider, but today a fault line inside of me just opened up. For staring at this spider, nestled in her web beneath her babies I realized how much I have become just like her....only worse.

I have watched my Chunks-a-lot go through something that can only be described as hell. I have seen her battle through sickness and endure endless chemotherapy treatments as we have fought to save her precious life. Coming home has been harder than I thought. There was this part of me that assumed everything would fall right back into perfect order, no questions asked. I thought the joy that would come along with finally being back in my own home would override any sort of possible fear or negative emotion. I now see how wrong I was in my assumptions. At first I would justify my over protectiveness with, "Well, she just got back on her feet after going through so much"; or, "I need to keep her as safe as possible until she gets a little bit stronger.". But here she is, happy, healthy, thriving and daily adding a new chunk to her already chubby frame and here I am, still hovering over her like a momma bird. Even venturing outside sends an anxiety through my veins that causes sweat to drip from my palms. She might step in an ant bed, she might get stung by a bee, she might fall down and scrape her knee and on and on I go.

The odd thing about all of this is I am actually not that type of mother. I've never been one to over-analyze or over-worry and I have always prided myself in being a fairly balanced protector.....until now. But what I realized as I stared at that spider is that as safe as her babies might be wrapped up in that carefully spun sack, in order to live they have to break free; and she has to let them. And I think the parallel to this situation in my own life is that as Chunks-a-lot continues to grow and do well, I am going to have to cut the strands of web that have safely cradled all of my anxieties and fears. For as justified as I might be in my need to over-protect her, it won't help her to blossom into her own unless I set her free from the past that haunts me. For to look at her, you can clearly see that she is beyond healthy, but when I look at her I still sometimes see that sick little girl just barely getting by. I always think to myself, keep her healthy today, keep her safe today, keep her eating today because you never know what might happen tomorrow. And this constant fear of the "what-if" for her future has plagued our "right now".

As God opened my eyes to this, I suddenly felt emotionally exhausted. Another deep revelation of something that I need to work on, another obstacle that needs to be overcome resulting from the trauma of this entire situation. It seems like God keeps giving me this constructive criticism in small doses, just enough to move me forwards but not so much that I collapse and give up. As easy as it would be to continue to hover over her and suffocate her need for independence, I want to do what's best for her and not what I think is best for me. So instead of trying to construct my web and keep her safe inside my ball of security, I have to give it to Him. And in His arms she can find not only the safety that she needs but the freedom to grow and live her life to its fullest. My job is to be her mommy today and leave tomorrow in His hands.

So today I am cutting another strand of my desire to control this story, by setting her free from my own fears. I can fiddle with this web a million times, hoping my efforts will keep her here with me forever, but I know that I can't do that. The fact of the matter is, nothing I do will ever change the ending He has already written. I would rather her end up with a couple of ant bites, maybe even a scraped knee but a host of wonderful memories than to lock her away from enjoying the time that she has because I am too scared to let go. After all, it may be my web...but it's His window.

Bubble Wrap

2009-06-17T19:41:00.005-05:00

Have you ever noticed how children can take anything and make it fun? My kids seem to have this down to an art. Today, I opened up a FedEx package that arrived in the mail and it was full of bubble wrap. Little did I know how exciting this would be to my little ones who are (obviously) starving for some sort of good 'ol fashioned entertainment. So what did we do today? We went to Vacation Bible school, went out for ice cream, ran some errands, ate some strawberries, jumped on the trampoline, played with a tiny caterpillar and then we did this...

....and it was the highlight of our day!

The Big Two

2009-06-09T20:24:00.007-05:00

June 8, 2007 was a day I will not soon forget. For on that day I was blessed with a beautiful baby girl named Chunks-a-lot. Nothing about her journey through life has been easy. She spent the first six months of her infancy crying relentlessly. I can remember holding her all night long for so many exhausting months, patting her back, just trying to comfort her as she screamed incessantly. She finally started to calm down just a little bit around 6 1/2 months old only to end up falling off the bed a few weeks later and fracturing her skull. I would have never dreamed that such a fall would lead to a much more sinister discovery; hydrocephalus, an inoperable brain tumor and a much needed brain surgery. That horrible fall off of our bed actually saved her life. And then just two days after her first birthday we received the heart breaking news that our precious little girl had a very aggressive form of brain cancer.....we left for St. Jude's four days later.
Sometimes I wonder how it is possible that she has endured so much in such a short period of time. How can it be that she has walked through more life experiences at the tender age of two than I have in my entire lifetime? Although it saddens my heart that she has had to battle through all of this, I have been blessed to be able to travel this road with her. For she has such an awesome amount of courage, resilience, endurance and fight in her. I have been humbled to see her walk through sickness with such an amazing amount of bravery. So yesterday as we celebrated her second birthday, it was really so much more than that to me. For it is by the grace of God that she is still with us today and I consider every moment I have with her a gift, a blessing and a miracle. We celebrated her first birthday with anxiety and a room full of praying people, begging God on her behalf for a miracle. We celebrated her second birthday with joy; joy for the life that she brings to our family and for the miracle that we have standing in our presence. Happy Birthday Chunks-a-lot, you are such an incredible blessing in our lives!! We love you!

A sweet Chunk

2009-05-28T20:16:00.004-05:00

My little Chunks-a-lot has recently discovered something wonderful.......cake. As much macaroni and cheese, noodles with butter and bread-products that she eats, you wouldn't really think she has the need for too many more calories in her diet. But nonetheless, she wakes up in the morning, sometimes asking for grits and other times asking for a piece of cake. Not that I would ever give it to her at 6 in the morning, I am not that crazy of a mother, I at least make her wait until 8:30 or 9am. I am kidding, of course. But anytime we set foot in Walmart, I have to steer clear of the bakery section unless I am prepared to be jumped by a crazy toddler wanting her sweets. The other day, Chocolat (Nannie) was with us at the store and Chunks got her eye on a container of mini blueberry muffins and got so excited about them that she almost jumped out of her grandmother's arms! The strange part about all of this is that she wouldn't even eat sweets until about a month ago. I'm not sure what has happened to suddenly make her crave the yummy goodness of anything and everything with sugar, but I must admit that I think it is cute. And with each dimple that is added to her sweet thighs and every chunk that starts to creep up in her cheeks, I sometimes start to think that I just might have created an issue here. But then I look at this face.....
completely stuffed with cake, and this face....overwhelmed by the indulgences of another cupcake and I think--- cancer, chemotherapy, months of pain and sickness, brain surgeries, MRI's, constant medications.........obsessed with cake? Well, we can fight that one another day.

The little moments in between

2009-05-12T20:33:00.004-05:00

As a mom, I sometimes feel like I live within a split personality. I seem to go from being in total awe of the two precious children that I have to literally wanting to pull my hair out when they fight and argue. Who ever thought that two children, separated by four whole years and divided by gender, could actually argue as much as my little ones do?!

Talks-a-lot is polishing off the art of irritating his little sister while Chunks-a-lot is coming into her own as a sassy, opinionated and drama-filled little girl. The combination can create fireworks. Just this morning, Talks-a-lot told his chunky counter-part that she needed to eat her breakfast. This command was followed by a sassy, "No!". The conversation that followed went something like this: "Yes!", "No!", "Yes!", "No!", "Yes!", "No!". I was so in "awe" at their ability to keep this up for so long that I almost went into a trance. That quickly ended when Chunks-a-lot let out one of her famous whiny screams. I corrected them both, told them to stop arguing and reminded Talks-a-lot that it is Mommy's job to tell Chunks what to do. And, yes, I do realize that stopping the argument the very instant it begins is the best way to head off such a dramatic ending, but I'm not always "on my toes" first thing in the morning.

Yesterday as we were cruising through Walmart, both of my children decided that they needed to ride in the buggy. I have no problem with this, as it really makes my shopping much easier, but then the fighting began. And the ridiculous part about it is that they were arguing about who got to hold which grocery item in their lap! I kept correcting and disciplining, only to have another argument spark about a tub of butter, at which point I began to break a sweat. I closed my eyes for a moment, yearning for some quiet, begging God for some patience and when I opened my eyes, a smile spread across my face. For there giggling together were two little people, two of the most important people in my life. Talks-a-lot had pulled his little sister into his lap and was whispering quietly in her ear. She was tickled and delighted by this and started trying to whisper into his cheek instead of his ear, it seemed as though she didn't quite understand the concept of telling a secret. But it served its purpose as Talks-a-lot broke out into laughter and tightly hugged his chubby, little sister. He sweetly kissed her on the face and she beamed with joy. A stranger passed us by and commented on how sweet it was to see two siblings who love each other so much. (He also went on to say that they actually looked like toys and not children, but I thought that kind of ruined the moment so we'll leave that part out.)
And I realized how much those little moments make it all worthwhile. Just to see my son, who is quickly becoming a young man, showering his little sister with love and affection brings a joy to me that I cannot put into words. And to see my little Chunks-a-lot constantly toddling after her big brother, aspiring to be everything that he is, lighting up with pure joy at just the sight of him; it touches my heart so deeply that it brings me to tears. The fact is, they don't come here with a dose of maturity, they're going to fight and argue about anything and everything....sometimes even all day long. But in those little moments where I get to see the bond they share and the love they so deeply feel for one another, I realize how blessed I truly am. Maybe it is a little bit like having a split personality, somehow I think it's all just a part of being a mom. And at the end of the day, it's a moment like this that makes my job as mediator, correctional officer and disciplinarian completely worthwhile..

The Big Six

2009-05-07T21:07:00.005-05:00

Tonight is the last night that my precious little Talks-a-lot will be five years old. Tomorrow is his sixth birthday and I am in disbelief at how quickly he is growing up. He is such an incredible young man and here is why:

1. His heart is bursting at the seams with compassion for others
2. He adores his little sister, even when she picks on him
3. He is thoughtful in ways that are far beyond his years
4. He treats his mommy like she is a princess
5. Life is a constant adventure for him, regardless of his circumstances
6. He wants to be a neuro-oncologist when he grows up so he can find a cure for Chunks-a-lot's cancer (I am serious, these were his exact words)
7. He always sees the good in everyone
8. He has an amazing ability to whole-heartedly forgive people
9. He is always open to learning new things, even if that means admitting that he doesn't know everything
10. He is the most tender-hearted child I have ever been around
11. He shows his love for his family at every moment possible
12. He is one of the funniest people I know
13. He is good at almost everything he does
14. He is always willing to help others, even if that means giving up something that he wants

And, really, the list goes on and on. I am so blessed to have such a wonderful little man in my life and I know that God is going to use Him in incredible ways....well, He already has. So here's to you, Talks-a-lot, on the eve of your sixth birthday. I cannot imagine my life without you and I love you so much! Happy Birthday!!!

The tick....

2009-04-25T22:39:00.006-05:00

Today was an emotional day for me and not for any reason I would have ever predicted. We had a very busy Saturday planned, we had a soccer game, a birthday party and then a family-fun day event at Talks-a-lot's school. We spent a lot of time outside in the sunny 88 degree weather and both of the kids seemed to thrive off their time outdoors. Chunks-a-lot's bandage that covers her central line got a little wet and dirty so I had to take her home early from the family-fun day so I could get her bathed and put a fresh bandage over her line. As I was taking her shirt off, I noticed something small and black in the center of her back. Upon closer examination, I realized that it was a tick. I immediately became angry at the tick, seeing it deeply burrowed into my little girl's soft, baby skin, taking from her the blood that she cannot afford to spare. Albeit, it was probably a very small amount of blood, but that did not seem to change my feeling of rage toward this tiny parasite. Remembering my childhood days, I got a needle, burned it over a flame to make it scalding hot and pressed it on the back of the tick. Then, I quickly snatched the tick from her skin and mashed it angrily in a paper towel. At first, I thought that I saw one of its legs still embedded in her back and fully expected to spend the rest of our evening in the E.R. What I once thought was a black leg soon disappeared and after talking with a nurse from her pediatrician's office, I was assured that we could take a wait and see approach. Apparently, the area will become swollen and inflamed if the leg is still there, in which case a doctor will have to remove it.
For whatever reason, this entire situation made me extremely emotional. Because, why her? After everything she's been through and all she's endured, why do things like this continue to happen to her? It might be something insignificant in the eyes of most people, but it seemed so invasive to me. This precious, innocent little girl attacked by something that seems so sinister. I know, I sound crazy, I mean it's just a tick!
As I rocked her to sleep tonight, I started thinking about how that tick is a close parallel to the sin and evil that try to pull us away from our walk with God. Burrowing its roots deep within us, Satan tries to suck away the lifeline of our eternity, the strength of our faith, the endurance of our journey down a very narrow path towards Christ. And we might pick at it, pull at it, try to quickly rid ourselves of these temptations, but just one root, one single leg can cause a foothold of evil in our lives. For God is the only one who can press on the backs of our sins, make them release their deep roots and bring us up from the oppression of the evil one who so desperately longs for our failure. So often I am guilty of trying to be too self-efficient. As though I am capable of overcoming my own temptations with just a flick of the wrist. But I fail to realize that I have only removed the obvious part of what plagues me and those roots of evil are still left within me, swelling up inside of me until I fall into them again. Following Jesus is more than just a statement, it's a minute-by-minute, decision-by-decision, daily walk. It requires a vulnerability that goes against everything society teaches us. And with that vulnerability and complete trust comes the ability to call on our Savior when we are being attacked, to come and rescue us from our enemies. They're out for blood, they burrow deep and the only way to rid ourselves of these parasites is to let God take control of every aspect of our lives and fill us with His spirit. A spirit that can rise up like a scalding flame and destroy the strongholds that Satan has in our lives.
It may have just been a tick, but at that moment, it was so much more. And the awesome lesson that God taught me through this experience was humbling. As her mother, I would have done anything to make that horrible thing release its grip on my little girl. And as our Father, He is waiting and willing to do the same; we just have to trust Him and realize that we cannot fight this battle alone. The devil is out for blood and Jesus is after our heart, and it's our decision as to who will take root within us.

Chunks, chubs, working towards obesity...

2009-04-22T12:01:00.004-05:00

Chunks, chubs, or as my husband calls it, "Working towards obesity", whatever name you want to use, I like to call her something completely different. A miracle.

And the greatest of these is love..

2009-04-17T21:27:00.003-05:00

This is what I have been meditating on lately. They're verses that we have all heard, probably a million times, and I think I have almost become desensitized to it. But if you think about these verses and think how differently your life would be if you were to strive daily to model the true definition of what love really is; how much could you positively impact someone with just your efforts to live out the real definition of the commonly used phrase,
"I love you". Try it....see what happens.
Love is patient and kind. Love is not jealous, it does not brag and it is not proud. Love is not rude, is not selfish, and does not get upset with others. Love does not count up wrongs that have been done. Love takes no pleasure in evil but rejoices over truth. Love patiently accepts all things. It always trusts, always hopes, always endures. I Corinthians 13:4-7

An impossible answer

2009-04-06T21:15:00.004-05:00

For whatever reason, sometimes children ask questions that not only take us by surprise, but are impossible to answer. Today I was asked one of those questions. Since the very first day we learned of Chunks-a-lot's cancer, I have always been careful in the amount of information I share with Talks-a-lot. I never wanted to overwhelm him with the facts, so we took it step by step, sometimes drawing pictures, sometimes giving child-like examples, sometimes just avoiding major details as they came about. As time passed, his questions ceased and he seems to be content with the amount of medical knowledge he has acquired throughout this journey. But today was different.
For some reason, Talks was sitting in the back seat of the car staring curiously at Chunks. I could see his furrowed brow deep in thought from my rearview mirror as he studied her tiny little face. Finally, he began asking questions. They were all very similar to questions he's asked in the past, but they were much more mature and he seemed very determined to stay away from the surface answers and dig deeper to the truth within. What is cancer? How did her brain tumor form? What do they do at St. Jude's that is so important? Why does the chemotherapy make her hurt so badly when it's supposed to be doing something good? I felt almost attacked by his curiosity and it was so surprising to hear him throwing out medical terms like, "shunt" and "hydrocephalus". He even asked me what type of tumor Chunks-a-lot had, which he has never inquired about before. I tried to stick to just the facts and not wander off into some sort of emotional path that might make him scared, but he just kept pressing me. Finally, just as we had pulled into the driveway at home, he jumped out of the car in what seemed like frustration and said, "But I just don't understand it....what would happen if the drugs suddenly stopped working? What would her head do if the tumor kept growing? How would her brain still fit if the tumor took up too much space? Would she still be able to think with something that big inside of her head? What happens to the children at St. Jude's who get chemotherapy and it doesn't work?". He literally asked all of these questions within 30 seconds and I could feel the blood draining from my face. I have avoided this for so long now that I wasn't even sure how to respond. My efforts to brush off his deepest fears were squashed as he refused to let me off the hook. "Well, buddy, they just go home to be with Jesus.", I stated as calmly as possible. The moment I spoke these words, I regretted them. He froze and time almost seemed to stand still. Suddenly, he seemed so grown up to me. It almost seemed unfair for him to even have to ask these questions at the tender age of almost six years old. He slung his backpack up on his shoulder and sternly said, "Well, I do not want my little sister to die.". Words escaped me. I could sit here and type a thousand different responses to that statement right now, but in the moment, I couldn't even mutter a syllable. As we made our way into the house he outright declared that when he grew up, he would become a doctor at St. Jude's; for, as he put it, "No child should have to die from cancer.".
Everything I have gained in regards to the art and tact of explaining things to children left me in the six or seven minutes that this conversation took place. I have been struggling so desperately, lately, with the words that her doctor spoke to us on our very first day at St. Jude's, "I do not expect her to survive this cancer.". As a mother, I cannot resolve this within myself. I cannot come to terms with it, I cannot accept it and even thinking about it is so painful that it takes my literal breath away. But as hard as all of these emotions might be, the look on my little boy's face as he took in that same possible reality, was ten times harder. I somehow regret telling him the truth, but I also know that it was an impossible question with an impossible answer that was only lurking beneath the surface. And as he prayed tonight for healing for his little sister, his words seemed much more sincere, they seemed to have the same air of desperation as my own constant pleading. But I believe that truth gives you power and now we both share this fight, this mission, this battle to seek out a miracle for a precious little girl. He assured me that it wasn't her fault, the cancer was something bad that she does not deserve and I couldn't agree more.
It's funny, you go through life trying to shield your children from the harsh reality of life, but in the end they always end up experiencing it anyways. Maybe I was wrong for telling him the truth and maybe it will only create a sense of fear and urgency within him, but when is a lie that brings a smile better than a truth that brings a tear? His attitude towards his little sister was so different this evening. Everytime she had a clumsy fall or bumped into something, he rushed to her side to make sure she was okay. As truly amazed and inspired as I am to see the fight and resilience in my precious little girl as she fights through this horrible cancer, it's only that much more incredible to see the kindness and compassion this situation has fostered in my son. I have a feeling he will be something great one day. For to stand back and watch as he fights with the strength and courage of someone far beyond his years, is simply amazing. I can clearly see now how this entire situation is shaping him and it's so obvious to me that God will use him in a great way. The first step towards truth is always the hardest, but at some point in life, it's just necessary. Maybe he's not old enough to share this burden with us, but it was an impossible question with only one impossible answer.

Just a little tighter...

2009-04-01T19:59:00.005-05:00

So I did it....I finally did it. After an entire year of being over protective, I finally left my little Chunks-a-lot in a childcare-type setting. I wanted to go to the gym today but it just didn't seem to work with my schedule. I had to take Chunks to the hospital at 8 this morning for an antibiotic infusion, we didn't get home until lunch time and by then all of my "family babysitters" were at work. You see, since she was diagnosed with cancer, I just haven't been able to bring myself to leave Chunks in any type of nursery. Even at church, I cringe when I walk past the "classrooms" with all of the little toddlers running about, wiping their noses on everything and pushing everyone down as they go. Don't get me wrong, I have nothing against childcare and, in fact, took full advantage of every childcare situation possible when Talks-a-lot was little. The thing is, he was healthy, he could defend himself, he was just as wild, rough and tumble as all the other kids around him. My little Chunks is so meek and timid around other children and it makes me so nervous to think about leaving her. I guess I could be just a tad over protective in this regard, but I think I own that right.
So today as I was realizing that my gym day would just have to wait until tomorrow, it occurred to me that I could actually take her to the "Kids Club", as they call it, while I went running. I called my husband, my mom, then my husband again to talk it over and see what they thought. They both seemed to think it was okay. Her immune system is up to snuff, she seems healthy enough and she definitely needs to be socialized a little bit with other children. So I waited until Talks-a-lot got out of school this afternoon and off to the gym we went. I felt better knowing that Talks would be with her, at least she would have him by her side to protect her. She didn't seem to mind when I walked out, I didn't hear any cries or screams, but still fully expected to be paged to the nursery five minutes after I left. Surprisingly, it never happened. It seemed like my workout lasted forever and all I really wanted to do was run back downstairs and hold her, but I resisted. I knew she would be okay and I also knew that sometimes I need to give her a little bit of space to grow without me right there beside her.
When I was finally done with my run, I jumped off the treadmill and almost sprinted back to the nursery. When I walked in, what I saw broke my heart. For there were probably 12 kids in there, all running around, jumping, laughing, yelling, playing.....and there was my little Chunks-a-lot, literally in the middle of it all, sitting quietly in the floor with her passy in her mouth and her blanket up to her face. She looked so lost, so scared and so out of place that it took everything in me to stay composed. And tonight as I rocked her to sleep, I cried. I know, I am completely crazy but just that picture in my head of her sitting all alone, looking so little in the midst of all these children, was too much for me. I felt like I left her, like she might have been sitting there wondering where Mommy was, when was I coming back, and something about that tears me up inside. This is probably one of those times where I could clearly assess that I have a strong over-protective relationship with my little girl. But after everything she's been through, after all the tears she's cried, all the pain she's endured, the impossible battle she's fought, is it so wrong that I just want to hold her forever and never let her go? I dunno, maybe I am crazy, but that's fine with me. One day I'll tackle the whole stage of "letting go" and giving her room to breathe, but for now, I think I'll just hold on a little tighter.

My stained-glass masquerade

2009-03-25T20:36:00.006-05:00

I try to be strong....I really do. I have so many medical responsibilities with Chunks-a-lot that it takes a huge effort on my part to stay on top of everything. I can't fall behind in my duties with her, the needs are too important. Her emotional needs are equally demanding. She likes to be carried around, on my left hip, cradled softly against her fluffy blanket that goes everywhere she goes. Even when we're at home, she insists on being held, and rounding out at a nice 25 lbs. or so, lugging her around can be physically exhausting. And then there's Talks-a-lot. He is just one of those kids that needs a lot of quality time, one-on-one attention, and he needs my constant conversation. The two of them put together is a full day.
I have always prided myself in "handling" it all, and with a smile on my face at that. But lately I have started feeling the cracks in my painted smile. Things have slowed down a lot lately, life has been pretty normal and sometimes pretty quiet. There's no more constant lab work, blood transfusions, endless inpatient days at the hospital, no, we're just here.....finally back at home. And as life has slowed down, I have had to come face to face with a lot of issues that I have. Being in control is one of them. Somewhere deep down inside I think that if I balance everything beautifully and stay on top of every little whim of life, I will win some sort of prize. Wrong. I only end up losing.
This past week has been so hard for me. Nothing has really changed in my life, Chunks is still doing great and Talks-a-lot is thriving in school and at home, but something still seems amiss. And it's me, I am fighting myself. I can see the danger ahead of me, the darkness that lurks and waits for me as I refuse to seek help from my Savior. See, because I think I have to do this alone, I have to be strong for my children, I have to be the voice of opinion with my husband, and on and on it goes. But it's not me who makes me strong, it's Him. This is why I have started seeing cracks forming in my life, because I can only go for so long without Him and then I will break.
I heard this song the other day by Casting Crowns called, "A Stained-Glass Masquerade". It's about people being fake and hiding behind their smiles when they're really struggling on the inside; and I am disappointed to see myself following this trend. I guess I had myself fooled, I really thought I had it all together. I thought that if I smiled enough, was happy enough, was strong enough, I could simply get through this. But here's the thing, I can't. I am not strong enough to endure this, not for the long haul; maybe for a time, but not forever. Christ desperately wants us to surrender to Him, to walk with Him daily, to cast all our burdens on Him, and yet I still try to carry my own load. I know He is allowing me to break, simply to gain my vulnerability and my submission to Him. And as many times as I have learned this lesson, I constantly have to be taught again. It's like I start wandering away and, like a Shepard with His sheep, He herds me back. I am realizing that strength isn't always defined by our ability to win as much as it is our ability to surrender.
I would be lying if I said that any of this was easy, it's not. The trials we have been through lately have been intense and it feels as though all of Satan's evil army is reigning down on us as a family. But God has allowed it and it's certainly gotten my attention. But the only victory I will find will be through my complete surrender to Jesus Christ. I guess it's like that song says, "It's time to close the curtain on my stained-glass masquerade."

My biggest mistake as a mom....

2009-03-18T20:58:00.006-05:00

Do you ever notice how much younger siblings pick up from their older counterparts? I am often amazed by how much Chunks-a-lot has learned from her big brother, constantly begging to do everything he does and always trying to copy exactly what he says. Being a boy and almost six, my wonderfully funny Talks-a-lot has a love for talking about anything involving body parts or bodily functions. I will be the first to admit that my initial response is not one of correction and I sometimes even (gasp) giggle and join in. Don't get me wrong, it's all innocent and mild, nothing vulgar or crude. I certainly would never encourage him to talk about the human body in an inappropriate way. So I guess I'm just a weird mom like that and I suppose it could get us in trouble eventually, but it's just like our little thing and....well, frankly, it's funny! But lately I've noticed my tender, girly little Chunks-a-lot saying some very interesting things. Talks-a-lot has caught on to the fact that he can get his Chunky sister to say anything he wants her to and it sounds pretty hilarious coming out of her mouth, so he has taught her some choice phrases. One of them is "heiny crack". The only bad thing about this is that my little girl has no conscience about where and when she chooses to say these wonderful little phrases. So we could be out in Walmart and all of a sudden she'll start yelling, "Heiny crack!!". Yes, I know, that is horrible. And yes I do realize that she is a young "lady" and should never utter any sort of phrase about a private body part, which is why I cover my mouth when I laugh at her so she will not think I am encouraging this behavior. If you are blushing right now or simply horrified that I would find this at all amusing, just listen to this video and tell me that you would not giggle (even just a little bit) if you heard this:

So what's my biggest mistake as a mom? Instead of saying, "No, no", discouraging childish silliness and correcting my children's never ending desire to say ridiculous things, sometimes I just laugh!

A step towards faith

2009-03-12T22:38:00.006-05:00

Sometimes I wonder if I will ever be able to stop worrying about my little Chunk. She's got some awful stomach bug right now and she is so miserable and sick. I suppose it is normal for things like this to happen to toddlers, but it is incredibly hard for me to watch her suffer after what she's already been through. She was constantly grabbing her stomach today and telling me, "Ouch, mommy", and it was almost more than I could handle. Her appetite is almost non-existent and her not eating is not okay with me. I actually spent 80% of my day fixing food for her to eat, most of it ended up in the trash...untouched. There's this weird part of me that is terrified that she will never eat again. I find so much joy in her rolls of precious fat and consider every pound she gains as a blessing. I couldn't stand to watch her waste away to the tiny, thin and sick little girl that she was just a couple of months ago. So anytime she gets sick, I find myself in this mass hysteria of emotions. And it's times like this where I realize how much I have not given to God. It's like I take what little bit of my fear and worry I can and I lay it at the Cross, the rest I keep hidden somewhere deep down inside. And today I realized how consumed with fear I really am. Fear for her future, fear for her well-being, fear for her life. As much as I go on and on preaching about trusting God, it's interesting to me how much faith I still lack. I know it is normal for a mommy to worry about her little ones, but there is a point where worry crosses over into obsession and I still struggle with that.
I feel like I've been walking on a cloud for the past few months, floating along in this non-emotional existence while things have been happy and "easy". Anytime anything happens that sparks an emotional fire in me, I push it away and refuse to think about it. I called this "giving it to God", but is that really what I'm doing? See, I don't think so. I think I'm stuffing it away and secretly hoping it will disappear if I don't acknowledge it. But when things start to get hard again and the reality of this situation rears its ugly head, I find myself completely overwhelmed with fear. I think that's a pretty good indication of how much I am really trusting God. We say it all the time, "I Believe!", and I always thought I did. Maybe it's just something inspiring that I say because it sounds good, these days I'm not really sure. But God keeps prodding me, pushing me into a deeper understanding of what it truly means to trust Him. It's like He won't let me get away with just thinking I believe in a miracle, He wants me to own it. And as I've unraveled my feelings and my deepest emotions, I've realized something about myself-- I am scared to believe. Not because I don't trust God, not because I don't have faith but simply because I am scared that if I believe, He will take her from me anyways. And losing her is not something that I could ever handle. She is almost like a part of who I am, like she runs through every vein in my body, and my connection with her defies anything I ever thought possible.
So today she is sick again and I feel like I am just beginning to journey down a road that I thought I had already traveled. A road that will teach me to put all of my trust in the God that created my precious little Chunks-a-lot. I don't think the point of believing is having to know whether or not your belief will bring about the ending that you desire, it's more about the complete abandonment of control to God. This is what He desires from us. So today I'll take one step forward into the understanding of what it really means to believe in a miracle for my little girl, knowing that one day, be it on heaven or earth, she will be healed. And that's something worth believing in.

The "chunks" in Chunks-a-lot

2009-03-04T20:20:00.006-06:00

I just realized something today.....my little Chunks-a-lot is just that---a little CHUNK! When we were at St. Jude's, her constant chemotherapy treatments caused her to stay very sick and lose a bit of weight. It was a daily chore just to get her to take a few bites of food and her weight was something we worried about constantly. We would cheer for her anytime she seemed interested in food and would go out of the way to get her whatever type of food she wanted. Even though those days are over now, that part of me has still not turned off. I still spend most of my days fixing meal after meal for Chunks, constantly offering her snacks and juice, from the minute I wake up till the second she goes to sleep. My husband, Lips, is often humored (and sometimes frustrated) with my valiant efforts. I have heard from him, more than a hundred times, that she is beyond healthy when it comes to her weight. I guess I've never realized how big she's getting until today. She has started experimenting with the potty, which is exciting, and asked me to help her climb on top of her little girl potty today for some "practice". I took her pants and diaper off and watched as she sat on her pretty pink portable potty, knowing nothing was actually going on "potty-wise", but excited just the same. When she was "all done", she got up half-naked and walked to the other side of the room. What I saw in that moment as she stood before me was shocking. For here was this amazing, precious little girl completely covered in chunky rolls and dimples! She was pudgy, squishy even, and her little tummy was so big and round. I realized for the first time since we've gotten back home that she is chunky again! I suppose she's been chunky for awhile, I've just never noticed it until now. And as much as I would love to say that I will stop worrying about how much she eats, when she eats, or what she eats, I know it won't be that easy. I carry this picture of her in my mind of how she used to look and it scares me. This is what I remember from those horrible days:

That picture haunts me and is a constant reminder of how sick she really was. So as chunky as she might be, I'll still rejoice every time she willingly takes a bite of food, every morning she eats 4 waffles in just under 45 minutes, every time she finds joy in eating food. And maybe my husband is right, maybe she will become a roly-poly chunk, but I count every ounce of her as an answer to prayer. It's just nice to see her finally live up to her name. She definitely puts the "chunks" in Chunks-a-lot!

Taking care of mommy

2009-02-25T22:06:00.004-06:00

So I was sick today and by sick I do mean deathly ill. I had another bout with Mastitis, which is a horrible infection that I wouldn't wish on anyone. It hit hard and fast and I ended up completely motionless on the floor this afternoon with a very confused Chunks-a-lot inspecting me from head to toe. Mommy doesn't get sick very often and even when I do, it's not the kind of debilitating sickness like I had today. But it certainly ended up being one of the sweetest moments with my little Chunk. There I was, curled up in a ball on the rug, not sure how I was ever going to get up and walk again when I felt this tiny little hand on my head. I looked up through my squinted eyes only to see little Chunks gently rubbing her hand over my head. She craned her face into mine and softly asked, "You 'kay?". I told her that mommy had a "big boo-boo" so she quickly grabbed up her favorite blanket and held it up to my nose. I'm not sure when this started, but sometime back Chunks-a-lot started becoming obsessed with the comforter blanket in her bed. Whenever she's tired or not feeling well, she has this odd habit of cramming the corners of her blanket in her nose and ears. It's definitely weird but seems to bring her some sort of extreme comfort. So as I laid there with this blanket shoved inside my nose, I found myself almost in tears at my little girl's sympathetic spirit. She snuggled with me there on the floor for a long time, constantly rubbing my back and offering me one of her precious blanket corners. I couldn't help but treasure this moment, as sick as I felt, for it was just an awesome reminder of how blessed I am to have such amazing little people in my life. I was further amazed after I picked up Talks-a-lot from school, as he made sure I was as comfortable as possible and watched Chunks for me as I laid on the couch. He mothered her for me, kept her busy with her building blocks and kept her out of trouble. He's so mature to be so young. And as much as I hated being sick, it was a moment for me as a mommy that I know I will never forget. It was the spirit of Christ being modeled for me right before my eyes. I'm not sure my children will ever realize how much they have impacted my life. As much as I try to teach and guide them, I feel like I learn more from them than they do from me. Being a mommy might be hard sometimes, but it days like this one that make every step of the journey worthwhile. I am eternally blessed.

Gambling with a three year old

2009-02-18T22:43:00.004-06:00

My husband and I were watching T.V tonight and a commercial came on for a simulated greyhound racing/gambling place called Greenetrack. They have an irritatingly catchy song at the end of their commercial that says, "Greenetrack pays you money....Greenetrack pays you MONEY!". It made me remember a conversation I had with Talks-a-lot about two years ago.

Being a stay-at-home mom with a husband who has always done whatever it takes to make life financially comfortable for his family, even if that means working three jobs at one time, we have learned the art of pinching a penny. We've worked desperately hard to instill in our son what it means to be frugal and this is not always an easy task with any child. On one such day of learning, Talks-a-lot had been begging to go out to eat for dinner. We had just finished grocery shopping at Walmart and I had already made plans for what we would be cooking for supper. He kept harassing me about eating out, pleading with me to go to a restaurant with his assurance that it was the "best idea". "But why can't we just go, I just really want to go out to eat tonight!", Talks-a-lot began. "Buddy, we're just not going to do that today. We just spent money at the store buying food to cook for dinner and it would be a waste of money to spend more on food at a restaurant.", I assured him. "So, we don't have any money left? You spent ALL the money that we had at Walmart and now we don't have anymore?", he questioned frightfully. "No, I didn't spend ALL of our money at Walmart.", I laughed. Talks-a-lot's face beamed with hope, "Then, we have some left over! Let's go to a restaurant.". Frustrated with his complete lack of understanding with my explanations, I continued, "Talks-a-lot, just because we have money left over, doesn't mean we need to spend it. If we always spent all the money we had, then we wouldn't have any money for anything. You have to save money so you can have it in case you need it one day.". I pressed on in my adventure in explaining the in's and out's of money managing and could tell that the situation was depressing my then three year old son. He seemed to conclude that we did not, in fact, have enough money if we didn't have enough to spare for eating out that night. "Well, Mommy," he began, "why don't you just go to Gweentwrack?" (this is in his best three year old verbally challenged voice). "Gweentwrack???" I began, "What is that??". "No, no, Mommy.....GWEENTWRACK!", he yelled. Seeing that I was no further in my understanding of his financial advice, he burst out into song. "You know, Gweentwrack pays you money....Gweentwrack pays you money!". I don't exactly remember how this conversation ended, but I have definitely had a lot of laughs about it since. Yes, let's go gambling. The simple answer to our financial woes from our wonderfully naive three year old.

Remembering yesterday...

2009-02-13T11:22:00.007-06:00

The past few days have been hard, no way around it, just hard. We spent the first three days of the week couped up in a ridiculously small hospital room and, as thankful as I was to finally get back home, it seems like the drama came with us. Have you ever had one of those weeks where it seems like your children fight about everything at every moment possible? Usually, my children are very loving towards each other, with only the occasional snatched toy or unkind word, but the past couple of days have been quite different. Everytime Talks-a-lot picks up a toy to play with, Chunks decides (very suddenly) that this particular toy is exactly the toy she wants to play with. A lot of tears are shed as I cannot and will not ask my son to entertain my little chunk's every whim and desire. On the other side of things, Talks-a-lot has discovered the exciting game of irritating a little girl. Because Chunk's immune system is on the "not so existent" side, they are not allowed to have any sort of physical contact; no hugs, kisses or anything of the sort. So to add insult to injury, Talks-a-lot will act like he's going to give her a hug, which she lovingly takes this bait, only to dash away in an instant leaving her standing there with her arms wide open. I know, I know, he's five...well almost six....and he's a boy and this type of taunting is perfectly normal for his age, but it's just not how he usually is with her. So to say that things have been stressful lately would be an understatement. And the icing on the cake is that we can't leave the house right now, no Walmart trips, no playdates, no library outings; once again because of Chunk's weakened immune system. So these kids are forced to be at home with each other constantly with no outlet to the outside world. I have a feeling this has contributed to our insanity. As I was fiddling with the computer this morning during Chunks-a-lot's nap, I came across something from our days at St. Jude's. It was a note that I had written to the future "me". I vaguely remember writing it but I have to think it was God who led me to read this as it really put everything back into perspective. Here's what it said:

Dear Future Me,

Today she woke up, breathed in and out, smiled at her mommy and played with her dolls. Today she was a princess, carrying her purse around like she owned the place and it brought so much joy to my soul to see her happiness. There were moments of struggle, times of fatigue for her, but overall today was a good day because it was another day that I got to keep her and love her. I'll never know what tomorrow holds, but I'm starting to realize that sometimes that's okay. Sometimes I'm content with today because each day she survives is another miracle, another victory. Today was one of those miracles. I don't know what you're going through right now as you read this, so far into the future, so much further along in this story than I am right now, but please don't forget these things. Her precious baby smell, the warmth of her soft, balding head, the way she crinkles up her face when she's fake-crying, her penguin-like run, how much she loves to eat noodles (and calls them noonles), how surprised and happy she looks to see me every morning, the way she always tries to boss people around, her eagerness to dance to any noise at any time, the joy I see in her face when she plays with her big brother and all the other incredible and wonderful things that I've had the pleasure of experiencing with her thus far. Please don't ever forget these things, for they have served to define the precious little joy that she is. Maybe as you're reading this, you're still cradling her in your arms, or maybe you're caught up in the frustration of the everyday life of mommy-hood; regardless of where you stand today please don't forget to remember yesterday. And please don't ever forget to thank God at every day's end for the miracle of life you've witnessed once again. God is good....all the time and He has carried you through to where you are now. Keep believing, no matter how hard it might be, never give up.

After reading this, I remembered how I used to envy the day when I would get to chase my kids around again and have nothing bigger to worry about than breaking up fights and mediating arguments. I actually used to pray that this day would come and here I am....living it. So I guess as hard as it might seem to be couped up in this house with my kids constantly picking on each other, at least we're at home and at least we're all together. I have a little girl who's fought her hardest through the most unimaginable tragedy possible and now she has the energy to spike an attitude with her brother, something so unbelievably normal that I forgot to thank God for it. I don't want to take these days for granted because I have a feeling that one day I will look back on these days and think, "Those were the good times.". So I guess I might need to wake up every morning and read this note that I wrote to myself to help me remember that as hard as it might seem, it's nothing compared to what we've already survived. She's here, she's breathing, she's happy and she's feisty with her brother....don't stop to ask questions, just count it as a miracle.

The joy that creeps in

2009-02-10T12:28:00.005-06:00

So here we are, once again confined to a tiny hospital room, completely isolated from contact with anyone from the outside world. My little Chunks-a-lot spiked a decently high fever yesterday and, coupled with the fact that she has a barely-there immune system, was admitted immediately upon our arrival to the E.R. The rooms here at our home town hospital are a lot smaller than the ones at St. Jude's and it almost feels as though we are the only ones in the entire world. But, for some reason, that's okay with me. She is fast asleep beside me as I lose myself in the world of blogging and I can hear every breath she takes and feel every little flinch and stir of her tiny, chunky legs. I figured we would end up here when I heard that her counts were plummeting downward and was dreading it at first, and then we got here and I was quite surprised. Surprised by the peace that overwhelmed me, surprised by the patience that overcame me and delighted by the sweet spirit my little Chunks has displayed despite being locked up in this prison. We had to sit in a tiny room yesterday in the E.R for five hours and as hard as that might seem with a toddler, my little girl handled it like a trooper. We sat on the E.R stretcher playing race cars, Little People and baby dolls and had a delicious dinner of pretzels and vanilla wafers, but it didn't bother her in the least. Her constant compliancy and wonderful attitude towards life helps me to embrace things head on without fearing the insanity that might come with it. For she took something so mundane and turned it into something exciting, something fun, almost like a playdate/picnic/doctor's visit all wrapped into one. And as she lays here beside me, sleeping as soundly as she would in her baby bed at home, I am inspired by her ability not just to adapt but to find light and happiness in every situation. So as hard and lonely as it is to be isolated from everyone right now, I guess I could sneak a peek through my daughter's rose colored glasses. For here we are, she's happy, albeit a little sick, but still happy enough to play with her babies and color her puppy-dog pictures; and I guess it doesn't really matter where we are, as long as we're together. Sometimes I wonder how someone so little can possess so much strength and endurance, but if you look in her eyes, you'll see it.....the presence of Christ in her tiny spirit. I guess when you are filled with the spirit of God, you don't always have to go searching for joy, somehow it just creeps in.

Life without a mask

2009-01-30T22:27:00.002-06:00

Today was a "girls" day for me and Chunks-a-lot. Talks-a-lot was in school for most of the day and then headed to grandma's house this evening for a sleep-over, so it was just the two of us. We spent most of the day playing dolls and coloring pictures but I couldn't get around the fact that we needed to go to Walmart, so we packed up the car with snacks and toys and headed out. Traffic was awful, given that it was after 4pm on a Friday and Chunks decided to take this time to ask me "What's that?" about three hundred times. She also created this wonderful game where she asked for a toy, insisted I take it back, then asked to have it again and on and on it went. As I fought through the sea of bad drivers, I could feel my frustration mounting as I wondered how necessary this Walmart trip really was. But being that we were more than half-way there, I decided to continue on. As I began searching for a parking place, I glanced back at Chunks-a-lot who was sitting happily in her car seat babbling about the birds that were chasing each other in the sky. The traffic hadn't bothered her, the 30 item grocery list that lie snuggly in my purse didn't frustrate her and she didn't even seem to notice that we had to park five blocks away from the entrance of the store. I scooped her out of the car, all bundled in her warm coat and hat and found myself in awe of her never-ending smile. In an instant, I felt envious of her joy, her amazing ability to enjoy life wherever we are, whatever we're doing. I started thinking back to the hard days and weeks she endured at St. Jude's. The constant sickness, the horrible drugs, her childhood stolen for so many months and I realized how much she deserves the happiness that she continues to find in her little life. For it's not the excitement of going to Walmart or the joy of spending an afternoon playing dolls with mommy, it's the freedom to finally just be a little girl that can do all of these wonderfully normal things. She lived so many months of her life behind a mask, having her hands constantly scrubbed with hand sanitizer, never being allowed to eat a crumb off the kitchen floor and yet she endured it with such grace. And now here we are, back to life as we once had known it and I've found myself so often taking the little things for granted. No more long nights in the hospital, no more tears from the constant nausea, no more days couped up in a hospital....my little girl can run free. So I walked into Walmart tonight with a different sort of list in my head; let's just make the most of it. So I let her walk beside the buggy, with no concern for time, just watching as she giggled at the teddy bears staring at her on the shelves and finding joy and laughter in everything she saw and touched. I let her linger down the aisles and ask every question she wanted to about the different types of food and snacks. I even let her carry around a puppy dog shirt that she fell in love with, simply because she deserves it. If she can find such joy in life then I want to make sure I find it with her. And I was delighted to take the time to just get lost in her world. Not that I could live everyday without rules or structure, but sometimes it's okay to just throw the list away and find an adventure instead; and that's just what we did. It might have just been a simple trip to Walmart but it was such a sweet time for the two of us together, doing something so normal and loving every minute of it. Sometimes I feel like I live my life behind my own sort of mask, shut off from the joy of the world around me, so caught up in what comes next that I miss what's right in front of me. I guess I figure, well, she took off her mask....maybe I should take off mine.

Copycat

2009-01-28T10:02:00.004-06:00

Have you ever noticed how little girls always want to be just like their big brothers? Over the past few weeks, I have witnessed some of the cutest moments where my little Chunks-a-lot has tried her hardest to be just like her big brother.

Exhibit one:
It might appear as though she's just coloring, but she's really "helping" Talks-a-lot "write" a book

Exhibit Two:
Here she is trying to play the Wii. She was even clever enough to throw in an occasional "Ah, man!" to make it seem as though she were actually playing.

Exhibit Three:
After dropping Talks-a-lot off at kindergarten, this was Chunks' way of celebrating his memory

But don't think that this is a one way street because there are about a million times during the day where Talks-a-lot makes this face to me

Impersonating this:

Chunks' famous "fake crying face" that she uses when she doesn't get her way.

This is what I love about children, they show their love for each other in the strangest (and cutest) ways.

Pint-sized drama

2009-01-26T22:08:00.004-06:00

As thankful as I am to be at home and have my little Chunks-a-lot back to acting like a "normal" toddler, I've found a couple of things that are hard about this situation.....she's acting like a "normal" toddler! I spent the last seven months catering to a very sick and lethargic child, jumping at her every command and begging her to eat even the smallest bite of a meal. I do not regret my actions, as they were the only thing I could do considering the situation, but it now seems as though she remembers (gasp) the way things "used to be". Today I fixed her lunch and we sat down at the table, as we always do, so she could gorge herself on meal number five at 1:00 in the afternoon. She decided that it would be much better to eat her meal on the couch and softly said, "Eat....couch?". I smiled and assured her that it was not a good idea to eat on the couch and we were going to stay seated at the table for lunchtime. I guess what I expected was a courteous nod and a returned smile, but instead I got a look of disgust and a commanding, "EAT....COUCH!". I was a bit taken aback by this response and firmly, but nicely, reminded my little peanut that we don't talk like that to mommy. Actually, I believe my exact words were, "No ma'am, that's not nice to talk to mommy like that.". My tone of voice couldn't have been softer or sweeter, but she still poked her bottom lip out and collapsed into a full blown murderous cry. Where does this drama fit in such a small human being? She also tried to touch the space heater today (even though it was off) and I said, "Nuh-uh, that's not a good idea.". She rubbed her right foot into the ground, poking it inwards as though she were bow-legged, looked up at me with a very sly grin and poked her tiny lip out. "Are you upset?", I asked, surprised that she would even have a reaction to my calm direction. And once again, she made a B-line to where I was sitting, collapsed into my arms and cried so viciously that she actually had to stop just to catch her breath. It's like you can actually see her feelings and emotions flapping around on her sleeve, you can see the heartbreak at just hearing the word "no" muttered, she is truly the epitome of the inner workings of a woman's heart. Yet I look at her chubby little face and I can't help but smile at her because she's acting like a toddler! I never thought I would rejoice in my daughter's ability to have the energy to have an attitude, but I secretly do. Ahh, I am blessed to spend my days breaking up fights, mediating who-had-what-first, and being a mommy to one little pint-sized drama-queen.

Any of them will do...

2009-01-20T21:22:00.003-06:00

Tonight, Chunks-a-lot, Talks-a-lot and I all curled up in Talks-a-lot's bed for some books and prayer time. Talks-a-lot was being very affectionate with his sister as she snuggled up beside him on his pillows. His prayer tonight went like this:
"Dear Jesus, please heal little Chunks. I like her being here. Please just take her tumor away. Maybe just send one of your angels to take care of her, watch over her and help her feel better. It doesn't matter which angel you send, any of them will do. Please just heal her."
Geesh, it's moments like this that not only humble me where I stand but make me realize how blessed I am to be the mother of two such incredible children. "Jesus, just send your angels....any of them will do."

You believed them?

2009-01-16T09:43:00.005-06:00

I had a very interesting conversation with my son the other night and it started with this question:
Talks-a-lot: "How do you know Chunks-a-lot is a girl?". Thinking I could brush off this possibly birds-and-the-bee's question, I went with the silliest answer first, "What do you mean, her name is Chunks, that's how I know". Not much to my surprise, this did not work. Talks-a-lot: "No, but how do you know she's a girl?". Looking down at her tiny bald head and her barely-there eyelashes, it occurred to me that because of the chemotherapy she's been through, she's lost all her physical markers as a female. Well, obviously not all of them, but she doesn't have pretty brown hair swept back into a pink bow or her beautifully long eyelashes that made every noticing woman jealous. Trying to be sensitive to the situation, I approached at a different angle. "Well, honey, I know that she doesn't have hair anymore, or her eyelashes, but she's still a little girl. Losing your hair doesn't change who you are on the inside.". Completely content with my answer, I could feel my "puppy-dog" face creeping in as I struggled to put my son's deepest questions to rest. Talks-a-lot: "No, Mommy, I mean when she was in your tummy, how did you know she was a girl?". Suddenly feeling ridiculous for my former responses, I blushed and offered up the simplest of explanations, "They took a picture of her in my tummy and the doctors told me she was a girl.". Talks-a-lot squinted his eyes in what appeared to be complete disgust, "And you believed them??". I have no words for this response, just a smile for my wonderfully curious and always cynical five year old son.

Fun with lipstick

2009-01-13T20:21:00.006-06:00

So I have this little girl....she is equally fascinated and delighted by anything girly. Purses, dolls, pink everything and anything and then, of course, lipstick! So she "steals" it from my purse....

Tries to apply it the way mommy does....

And this is the finished product...

Could there really be anything cuter?

A deeper salvation

2009-01-11T18:06:00.004-06:00

After my last post, I had a lot of feedback on my new understanding of Christ. I realize now that my wording might have led some to believe that I was never saved to begin with, but this is not what I meant. Sometimes I think that we get so caught up in what it means to be a "Christian" that we forget how to have a relationship with Jesus. I have believed in God for as long as I can remember, but I've spent so much of my life trying to conform into what I think I need to be that I've never focused on what Christ wants me to be. And not that I was never saved to begin with, but just that I have been walking a spiritual journey for the past 20 years and, recently, reached a very pivotal moment in my walk with God. I thought I knew what salvation was but I now see how immature my previous understanding really was. It's kind of like my relationship with my husband. Seven years ago, at the beginning of our marriage, I loved him as deeply as I thought I ever could. But as time has gone on and the memories we have together have compounded, I now see how much deeper my love for him is. It's not that I didn't love him in the beginning, it's just that I didn't know him deeply enough to love him as much as I do now. That's what I have experienced lately with Christ. I thought I knew what it meant to be a Christian and to be a child of God, but I only now realize the true definition of salvation. And my understanding is so much deeper than it once was and all of the doubts I used to have have faded into the background as Christ has come center stage. I know where I am going one day, I know where my future rests, I know the home I get to enter into when my time on this earth is done. And whether that means I've just now discovered salvation or just found a deeper meaning to my previous understanding of salvation, I'm really not sure. And I don't think it really matters as long as you know your Savior. After all, I think a relationship with Christ should be one that constantly changes and grows as time passes. I'd like to think that the day we reach a full understanding of Jesus is the day we're standing before Him on the throne. And until that day comes, I hope to always be blown away by His presence, mercy and love. Salvation doesn't begin and end the day you accept Christ into your heart, it's a journey that lasts a lifetime and I can't wait to take the next step.

The day I met Jesus

2009-01-05T20:45:00.003-06:00

I grew up in a Christian home, constantly surrounded by Bible studies and Wednesday night church. God was something I never doubted, never questioned and never ventured from; Christianity was my religion. I claimed my salvation at the young age of seven and hardly missed a Sunday morning at church, yet God always seemed more like a story to me instead of a Father. Throughout my adulthood, I have struggled to find myself. Constantly searching for who I think I am only to be frustrated when my new vision of myself didn't "stick". I would pray to God at night, the same prayer almost every night, always living in the comfort zone of my lukewarm claim to Christianity. Then came Chunks-a-lot and I began a journey that I only now recognize as life-changing in regards to my eternity. Living at St. Jude's was hard and the constant stress of seeing my little girl sick was sometimes so overwhelming that I felt numb. I would cry out to Jesus, beg Him for intervention and then celebrate in all the small victories and tiny miracles. Each day felt like a learning experience and it all led up to one important day....the day I met Jesus. It was a few weeks before we came back home for good and I was on the treadmill in the fitness center, running off my stress and anxiety while casually listening to Dr. Charles Stanley preach on the television above me. It wasn't anything profound in the message on T.V., in fact it wasn't even a sermon about salvation or eternity, but for some reason something inside of me broke. I stopped running and just stood there, sweat dripping down my face, heart pounding in my chest and I felt Him. I had cried out to Jesus so many times, with such angst and heart-wrenching emotion but this was the first time that I had ever truly met the spirit of God. And there He was, not in a visual sense, but just all around me, comforting my broken spirit. I realized at that moment that this "religion" I've so desperately clung to for so long is not a religion at all....it's a relationship. That might not be a profound thought, but it was more the understanding that came with it that melted me where I stood. I suddenly understood my former frustrations with my identity as the only peace and sense of self I'll ever find is wrapped up in Him. Tears rolled down my cheeks as I quietly surrendered my life to him. Not because I was taught to do so, not because it was second nature, not because that's what Christianity requires, but simply because I longed to. And then the most amazing thing happened, He entered my spirit. He met me right where I was, broken-hearted, vulnerable and weak and opened my eyes to the peace that comes with a true relationship with Christ. Now I look back on this past year of medical and emotional trauma and I feel so humble, for God took something so tragic and used it to bring me to Him. And it's not a spiritual high that you feel after a Church retreat, it's every thought, every action, every breath....you feel Him. Gently nudging you towards patience, softly encouraging you towards obedience and always filling you with His mercy and love. It's taken me almost 27 years to find who I really am and now I finally know......I'm His.

The real miracle of healing

2008-12-18T22:10:00.006-06:00

As I sit here tonight in my home, surrounded by all the things that I've come to find comfort in over the past few years, I find myself overwhelmed by peace. Looking back over these past six months, I now realize how hard the journey has been and how unbelievably thankful I am to finally be at home for good. There's an ache in my heart for the families we left behind at St. Jude's, the families that continue to fight for healing, for miracles, for home. And as thankful as I am to be here, I know our journey only continues as my little girl fights for her life. I pulled Talks-a-lot and not-so-Chunks-a-lot into my son's bed tonight, curled up in blankets and stuffed toys to read some books together. The third book we read was by Max Lucado and it was called, "In case you ever wonder". It was about a parent's love for their child and near the end of the book it talked about heaven. How there will be no tears, no pain, no need to want for anything....a perfect escape from this not-so-perfect world. Reading this part made a lump form in my throat and I had to stop reading for a minute to compose myself. In fighting for this miracle for my little girl, sometimes I only focus on my perception of what a miracle really is. For her body to be healed, on this earth, so I can keep her and hold her forever....but is that true healing? For are we not all hurting in some way, sick in one way or another, fighting our own battles day in and day out. Can anyone ever experience true healing here on earth? I suddenly realized how backwards my thinking is. For the healing we will all experience as we enter the gates of heaven, greeted by the Savior that has carried us through, finally resting in the peace of the angels that surround us; is this not the ultimate healing we all hope to one day experience? God opened up my eyes tonight to something. Not that I will stop praying for her pain to be taken away, not that I will ever stop begging for her tumor to be bound, not that I will ever give up on believing in this miracle of physical healing, but just that God's mercy runs far deeper than my eyes can see. I teach my children to thirst for Christ, to encourage others towards Him, all in an effort to help them reach their eternal destiny in heaven; the ultimate healing in a broken world. Heaven isn't just a fairytale wrapped up in a child's book, it's the eternity we should all hope to reach one day. Upon this leading and understanding from God, I felt the courage to again surrender my little girl's life to Him. I've done it a thousand times and will probably have to be reminded to do it a thousand more. For as much as I want to keep her, I do truly love her enough to let her go. And with that comes freedom, the freedom to walk each step of this battle in peace and faith. Never looking back at the anxiety, fear and worry that will constantly try and plague my every move, never fearing the future for He's already written it. I guess I've just realized how deep Christ's love for us really is, that He has prepared a place for us to go after fighting through life here on earth. I'd like to think I've experienced a taste of what that feeling might be like last night as I walked in the door of my home, leaving the heartache behind me as peace overwhelmed me. I'll keep on praying for a miracle for my little McKaylee, but I'll also pray for both of my children to one day reach heaven's gates into the arms of their Savior, knowing that's where they'll truly find their miracles.

2008-12-13T21:36:00.002-06:00

All the trials and hardships we've been through in the past six months have been completely worth it.....just to have the blessing of experiencing moments like these...

The freedom to love

2008-12-11T06:47:00.004-06:00

I'm sitting here in the early morning hours, just an hour and 15 minutes away from Chunks-a-lot's MRI scan. I was worried that last night would be a sleepless one, but instead I found myself overcome with exhaustion. This morning, however, my mind will not turn off. I stumbled across someone's caringbridge page last night (caringbridge is a website that helps family and friends follow their loved ones through illness) and it was an older lady that had a brain tumor and had just recently passed away. I found myself digging through the old journal entries on her page and reading all the updates from years past up until the present. This woman had fought a battle through cancer that had so many ups and downs, filled with moments of pure hope and joy then turning to times of pain and sadness. It was obvious, as I read through this woman's 21 month struggle, even from the beginning that she probably would not survive her cancer, but the family that surrounded her seemed oblivious to this. The hope they clung to, even in those last days of life, was astounding. I suddenly realized how closely our paths run together. Sometimes I see it in people's eyes, the question of, "Don't you realize how sick your little girl is?". And no, I truly don't most of the time. There might be times where I am overwhelmed with the reality of this situation, but for the most part I only look at it with hope. "Doesn't she realize that there are astounding odds against her daughter's survival?". Yes, I do realize that, I just choose not to make it my focus. Does that make me unrealistic? Probably so. But then I think about the way God views us and there seems to be a huge parallel there. Like there are times where I know God knows I'm going to screw it up, He knows I'm going to bust and almost not recover, but He still has hope for me. And not an unrealistic, blind hope but a hope that is filled with freedom. I have spent the better part of my life trying to "prepare" myself for whatever life might throw at me. I eloped at the tender age of nineteen and spent the first year of my marriage trying to "prepare" myself for the fact that my husband might leave me one day. He didn't show signs that he would do such a thing, but the odds were against us, so I decided to build my wall to protect myself. Yet as my marriage has continued on, with no signs of failure, I've realized how much I lost in that first year. In my efforts to "prepare" myself, I lost my passion for love and my freedom to live it. I don't want to prepare myself for the road ahead with Chunks-a-lot. Sure, I know she's not supposed to survive. Yes, I realize the odds are highly against her winning this battle, and that's why I'm not going to waste a moment of this journey. Why not just love and love freely, without the burden of the "what-if's"? Why not just throw caution to the wind and trust God for that miracle, that miracle that almost seems impossible. I might get hurt, in fact I probably will. But at least I will have lived and freely loved without trying to control and plan out each step that might lie ahead. So today as we are embarking on this next MRI scan, the part of me that wants to give way to fear and anxiety is being stuffed away. God will be there as much in the end as He is in the beginning. In the meantime, I'll just love her. It's not my job to write the future, it's His. Today is just another page in this story and I'll happily walk through it with freedom. The freedom He has given me through His perfect love and never-ending mercy.

Forgetting to remember

2008-11-21T19:50:00.004-06:00

The past five months have been hard....probably some of the hardest times I've ever lived through. There were days where I didn't think my daughter would live through the treatments, days where I wasn't sure if she could go one more day without eating, days where I couldn't feel the presence of the God I cried out to so desperately. Those days are over and I have had the pleasure and the joy of seeing my little Chunks-a-lot thrive and grow in ways I never thought she would. The happiness I see in her face delights my soul and she is such a sweet blessing in my life.

Yet it's interesting how quickly the memory of the hard days has faded from my mind, I've been surprised by my sub-conscious eagerness to forget those days and weeks that we somehow survived. I can remember crying out to God sometimes on an hourly basis, begging for His mercy, pleading for His intervention. And somewhere along the way, God answered our prayers; for here she is, happy, thriving and improving daily. And instead of increasing my praises to the God that has healed her thus far, I've slowly diminished in my prayer life.

It's funny how God reminds you, continuously, that you still need Him. Two days ago, my little Chunky girl started having problems with her balance again. It seemed to happen very suddenly and her clumsiness seems to plague her once again. She has become more irritable, as well, and it's interesting how quickly I hit my knees when this change occurred. Obviously, I am terrified that the tumor has started growing again and is causing her problems.....and it seems to be a nightmare I can never quite wake up from. This problem with her balance has happened so many times before and it's always resolved itself without explanation, but this time I feel my fears rising up in me like they used to in the beginning of this journey. That horrible feeling of despair, those constant questions of "what if?", the complete and total vulnerability I have at the realization that her life is in the Hands of the One who gave her to me.

It's situations like this that make me feel like a child in the grand scheme of things. It's just like I can teach my son something profound and I will see him latch onto the concept in that moment, but give him a few days and he will completely abandon the knowledge he's recently acquired. His mind is still immature and he's not done growing mentally and emotionally....that's how I feel sometimes in my relationship with Christ. I feel like this journey was meant to teach me something and every time I start to learn it, things get too easy and I forget to stay on the path that God has laid out for me. It makes me feel so juvenile to realize that I need to be constantly reminded to depend completely and totally on God. And as scary as these times are, I am thankful that God keeps putting things in my path to help me remember who's running this show. Her balance might just as suddenly improve tomorrow and she might just go back to being the happy, bouncy toddler she's been lately, but in that instant I should hit my knees in the full assumption that I have just witnessed a miracle. For how many times has God spared her so far? How many times has He given her one more day? How many miracles has He already performed that I just take for granted? Her life seems so fragile to me and I am obsessed with making every moment count....I never want to look back and wish I had done things differently. And in that same passion I should make sure that I never let a day go by without thanking Jesus Christ for giving me one more beautiful day with my precious little girl. The truth is, I have no idea how this story will end but I don't ever want it to end with me forgetting to remember the hundreds of miracles I've seen through this journey. I've always said that if she suffers through this and we do nothing but drown in our own sorrow then her suffering will be in vain, but if we make this count, if we make sure this makes a difference in some body's life for eternity, then we have honored her suffering. And in this battle, in this fight, I don't want to waste another day forgetting what it is God is trying to teach me. It's not just a Miracle for McKaylee, it's a miracle for all of those who have been touched by her story, including myself. So as I drop to my knees in another desperate prayer, I am reminded once again of how safe I feel in the arms of my Savior. Knowing He will heal her, one way or another, and finding comfort in the fact that I can always come to Him....even after forgetting to praise Him in the good times. I always seem to find myself in the darkness, yet when the light comes pouring in, I all to quickly forget the One who's holding the lantern.

The fight continues

2008-11-16T10:38:00.003-06:00

Last night I found myself overwhelmed with emotion. I started looking back at all of the pictures we have taken since our very first day here at St. Jude's. Although I can remember those first days very clearly, in a way they seem so distant....almost like they happened years ago. I can remember feeling like we would never reach the end of our treatments here in Tennessee, the days sometimes felt endless and yet now that we are just around the corner from finally coming home for good, I feel somewhat sad. Leaving here will be hard and I never thought I would feel that way. Everyone knows my little Chunks-a-lot and they all wave to her and make over her as she toddles down the hallways of the hospital. She enjoys the constant attention and is sure to greet every friend and stranger on her path. I'll miss the tight-knit family feeling that exists in this place, I'll miss how much we fit in here. For back at home, my daughter is different...she's sick...she's well-known because she is the little girl that's fighting cancer. And not that people aren't warm and welcoming back at home, they are. But sometimes it's just hard to be so different. All the children are sick here at St. Jude's and you can pass their parents in the hallways and see that same look of desperation on their faces that you feel in your heart. Yet I come home and feel overwhelmed by the pity I see on people's faces when they look at my little Chunk, the shock I see in their eyes, the whispers I hear behind my back. Don't get me wrong, I'm not saying that I don't understand it because I know that people are curious and that's fine, but that doesn't take away the hurt. And I guess it's a hurt that I haven't had to experience here because my little girl just looks like all the other kids. I think I look to this place like a haven, a community of hope, and my attachment to St. Jude's runs deep within my soul. I think I'm also scared that I'll forget.....forget to relish the simple joys of life, forget to cherish every moment of every day, forget to appreciate my children for the wonderful people they truly are. I'm scared I'll get caught up in the ho-hum of "normal" everyday life and I'll forget all the lessons that I've learned here....and I don't want to forget. So as we start packing up our things to make the journey back home, I suddenly feel so lost. I wish I could say that I know where God is leading us and what He has in store for us, but I don't. Will the tumor stay stable forever? Will she just go back to being a bouncy and energetic toddler? Will life just suddenly go back to the way it used to be? What if her tumor suddenly starts growing again....will they be able to control it again the second time around? What happens next....I guess that's my biggest anxiety. As much as I know I need to let God take the reigns, it's still hard for me to give up control of my little girl's future. He's gotten us this far and she's still alive and happy and doing better than ever so you would think I could rest in the mercy of the Savior who brought us where we are today. Instead, I find myself scared to move forward. I wish I could live in this realm of hope, vulnerability and ever-growing joy but I can't. So I'll do the only thing I can do, take one step forward. Knowing somewhere in my heart that God IS still leading us...down the path that He has chosen, to a future that only He knows. And I'll continue to learn the lessons necessary to make it to our final destination and only then will I understand all that it took to get to the final page of this book. The fight doesn't end here....in fact I somehow feel like it's only just beginning.

My little bundle of joy

2008-11-06T20:10:00.003-06:00

I have the most precious, bubbly and girly little toddler! This is what I get to play with everyday.....jealous?

A stranger in my own home

2008-10-14T13:05:00.003-05:00

So I'm finally here at home, my second visit back since we've been at St. Jude's and I feel oddly out of place. There are so many memories here, resting in the corners, hidden in the walls and they seem to almost haunt me now. I feel this intense urge to bask in the comfort of the life I've had to leave behind and yet I can't seem to find any peace in it. My life has been completely turned upside down and all of the things that used to be so important to me seem so foreign now. I had such a routine of chores, errands and play dates that I used to strictly adhere to and I can't seem to find the motivation to do these things anymore. For I look at my children, together once again, and all I want to do is lie on the floor and play with them. I don't want to waste a moment on anything unimportant (or seemingly so), I just want to catch up on all of this time that I have lost with my little ones. Yet I keep feeling this tug, this constant push to fall back into the mold of who I used to be, but I don't see happiness in that person anymore. As traumatic as my life has been the past four or five months, I feel like I've truly found myself amidst this pain and sadness. And the weird part is, I'm not who I thought I was. My life had taken on such a routine of being this certain type of mother and wife, but deep down inside that's not really who I was....it's just who I was pretending to be. I feel like I got so caught up in life and all the joy I was supposed to be finding that it secretly passed me by, lost in my efforts to be who I thought I needed to be. Now I sit in this house, surrounded by the all of the things I used to let define me and I feel so lost. My mission at St. Jude's doesn't exist as strongly here, here I'm just a mommy with a sick little girl. The hope that engulfs me daily at St. Jude's seems to elude me here as I am once again reminded of how tragic all of this really is. I never thought life would be harder at home than it would be away from home, but in some ways it is. Our fight belongs in the hospital, where battles are won and lost everyday, not here at home. I guess I just wish coming home meant that we could leave this battle through cancer behind us...even if just for a moment. The day I walk through these doors praising God for the miracle He has given to my little girl is the day I will truly feel like I've come back home. We're not there yet....but we're fighting to get there. Our journey at St. Jude's isn't over and that's a story that needs to be written before life can truly begin again. Until then I'll leave those memories hiding in the corners, resting quietly until they can be remembered with joy once again. Believing that one day our home will be surrounded by peace, filled with love and rejoicing in a Miracle.

Cry out to Jesus

2008-10-08T21:58:00.004-05:00

I should be asleep right now but I've tossed and turned for the past hour or so and just can't seem to find rest. I am so scared right now. I haven't put too much thought or energy into worrying about Chunks-a-lot's upcoming MRI scan but now I find myself completely consumed with fear. There's another little girl here at St. Jude's with the exact same tumor, also inoperable, also searching for a miracle who got some heart-wrenching news today. The results of her latest MRI scan showed that the tumor has grown substantially and they have now changed her previous diagnosis from life-threatening to terminal. I have been in shock about this for most of the day and it's shaken me to my core. I know this little girl's mother, I've seen them around the hospital, talked to them at the Target House, prayed for them constantly and now this....it's just flooded me with emotions. Any hope of not getting too worried about Chunk's scan is now out the window as I find myself completely engulfed by terror. I laid in bed tonight staring at the light shining through the tightly closed blinds and it felt like I was hearing about Chunk's tumor for the very first time. There are so many times where I honestly just forget what she's fighting. The side effects of chemotherapy rule our lives. There's always a hundred things to worry about when she's battling through her treatments. It's a constant struggle to keep her eating, it's exhausting to continue to find foods that please her and don't offend her nauseous tummy. We spend most of the day fixing foods for her, in hopes that she might eat even just a few bites. Then the medicines...another battle. She has a medicine she has to take on Mondays, Tuesdays and Wednesdays twice a day to protect her body while she's going through Chemo, she has an anti-seizure medicine she takes three times a day every day, she has two different anti-nausea meds that she takes every 6 hours around the clock, then there's the electrolyte supplements. The chemo not only drops her counts, but her levels of magnesium and phosphorus. To remedy this problem we have to crush these enormous pills containing the supplements that she needs and make sure she gets them anywhere from 2-4 times a day. When you're dealing with a picky and very nauseous child, trying to find something to disguise a bitter tasting crushed pill becomes a very stressful situation. Sometimes just giving her the medicine makes her throw up and then we have to start all over again. When her counts are zero, we constantly have to worry about fever. She can spike a fever at any given moment and without warning and it can become a critical situation very quickly so you have to become OCD about everything she does. She can't eat after us, put her dirty hands in her mouth, put a toy in her mouth, eat any type of leftover food or drink, be around others who or sick or just a crowd of people in general, and on and on it goes. You see what I mean? The world of chemotherapy is a great distraction from the reality of why you're going through the chemotherapy. But there are these times, like tonight, where all of a sudden I remember why we're here. I am forced to think about what it would be like to hear the "bad news" and it tears me apart inside. I have to face reality for a little while and it eats me alive. To think about losing this precious little girl is almost more than I can handle. Sometimes it almost feels like she is a part of who I am, she runs through my veins on such a deep level that it almost hurts to hold her. The love I have for her in my soul is so intense that, at times, it brings me to tears. I think back to the days where things were so much more normal and I can remember all the little things that used to frustrate me so much and now I think---wake up!!! Oh my goodness, love your children, cherish your little ones, delight in their every breath! They are little but for a moment and then it's done. They might frustrate and irritate the living daylights out of you sometimes, but they're childhood is so innocent and so fleeting. I know I probably sound like a lunatic right now but my heart is bursting. My precious little girl is fighting cancer, a brain tumor, an uphill battle at best. That is her reality....and that is the reality that I am still trying to come to terms with. Tomorrow, this night will be behind me and I'll get lost once again in the daily routine of beating these chemo side effects. But for now I'll sit in this silence that seems to be shouting out at me, keeping me from finding any sort of rest and peace. I feel such an urge to pray endlessly tonight and so I will. Lord Jesus, you have to let me keep her. I cannot lose this little one as she is a part of my very being. Bind this tumor, rid her brain of this cancer, heal her little body. Give her this miracle....a Miracle for McKaylee. Jesus, please just give her this miracle....

The cages

2008-09-23T07:28:00.009-05:00

She's in a cage, a cage-like-bed, but still a cage. I'm sitting here in a hospital room staring at my little girl who's fast asleep, chemo running into her body, blanket pulled up to her face, lying peacefully in her caged crib. Sometimes she'll moan a little bit and I'll jump to see if she's waking, only to find her soothing herself back to sleep. The inpatient days drag on at an agonizing pace, you start to feel these walls closing in on you as the world outside feels like a paradise you can't ever seem to reach. As I stare at her lying in that bed with IV lines coming out of the bottom of her tiny shirt, she suddenly seems so little. Too little to be enduring such a horrible physical battle. Sometimes I am convinced that God has allowed me to enter into this journey with her to let me see what angels might be like....for she certainly is one of them. I am so enamoured by her strength and it humbles me daily. There are days where she's irritable and screams incessantly and the human part of me wants to break down and shush her, but then I remember that she can't communicate her pain in any other way than by crying. Her little body must hurt, ache, and tire and there's probably days where she's doing all she can do to just make it through without completely breaking down. I forget sometimes how much she must hurt and I'll probably never know all the battles she's really fought. She can't tell me, "Momma, it hurts", so she buries her head in my shoulder and cries. There are days where I can't walk two steps away from her without her screaming out for me and sometimes her dependence wears on me, but then I remember how scary all this must be to her. And to be able to be her comfort, her peace, her shoulder to cry on; I feel eternally blessed. That's not to say that any of this is easy because it's not. There are nights where I honestly can't find it in myself to even bow my head in prayer, as backwards as that might sound it is the truth. There are days where my attitude is not positive and my behavior is not the most pleasant, but I'm starting to realize that the bad days are just a part of it. Fighting seems to be the answer. Fight through the notion to think I can do this alone, fight through the temptation to lose my patience, fight through the pain of watching my little girl suffer. For as caged as I might feel in this world of emotional instability that has now found a home within me, her world is so much harder. And knowing that her body aches and her tummy hurts and her legs won't work the way she wants them to sometimes humbles me where I stand. For she still gets up every morning with a smile on her face and she refuses to let her burdens get the best of her. What excuse do I have? I look in the mirror and ask myself that question quite often, what excuse do I have to complain? None. So I'll just fill her little life with as many happy memories as it can hold, hanging on to the promise that one day she will be free. Free from this cage, from this pain and suffering, free to just be a little girl....a little princess. But for now, she'll shine; an angel amongst us in the darkest of times. All along teaching her mommy how to walk through the hard times. Knowing one day that we will break out of our cages together.

The Reserve

2008-08-30T21:34:00.001-05:00

Sometimes I have these days where I feel empty, like totally void of any normal human emotions. When Chunks-a-lot is having a rough week, she needs me on a level that is almost unrealistic. She clings to me desperately, follows me around obsessively and calls out for me immediately anytime I leave her view. Most of the time I find myself doing everything with her on my hip, her face buried in my chest or on my shoulder, constantly craning her face in mine to remind me that she's in pain. It's overwhelming to say the least. Even at night, as most are sleeping, she's screaming out in pain, tugging at me all night looking for some comfort as we both struggle to find some rest. Sometimes I have to pray hourly for extra patience on those hard days or for the energy to carry her one more step, but God always sustains me. The only problem is my life doesn't begin and end with her, I still have a husband and a son who desperately need me in different ways and on different levels. That's where I start to give out. I feel like I wait all week long to see them and then when they get here, I'm almost too exhausted to give them the energy they need from me. It's this weird feeling of being torn in all different directions and wondering when you're finally going to break. Talks-a-lot likes to do just that, talk a lot. And he needs me to focus on him, to answer his questions, to dive into the depths of life's biggest mysteries. When he's here, he holds my hand constantly, almost like he's scared to let go sometimes and it saddens my heart to see his desperation. He was once my baby, the child I cradled each night, the chunk I carried on my hip and he got all of me everyday...every ounce of love, attention and devotion. He seems so grown up now and I feel so out of sync with his life and who he is. I've had to pour so much of myself into my little Chunks as we fight through this cancer together that my son has been growing up without me. How is that fair? And then my husband, my loving and adoring husband who needs me on such an emotional level, the man I've spent the past almost 7 years growing up with. He clings to me as well, and yet sometimes it's just a piece of me and probably not the piece he really needs. It's just made me realize how we are only made up of so much patience, love and goodness, the rest is God in us....shining through. Like a soldier in battle can fight without protection for so long until he falters, but put his armor on and he is indestructible. God has become my armor. I tried to "rebuild" myself with strength and endurance, thinking I could do this on my own, but I have realized how impossible that is. For I have this family, this wonderful and beautiful family that deserve just as much fight from me as I am giving to my little girl. And I can't do it, without Christ by my side filling my reserves each minute, I cannot humanly do it. So I'll humbly take the armor that God has waiting for me and I'll become a warrior in that moment that I need it. You might see me walking down the halls of St. Jude's, Chunks-a-lot on my hip, Talks-a-lot holding my hand and Lips with his arm around my waist, and if you look closer I'm convinced that you'll probably see God's Hand holding all of us. Leading the way, lighting our path and filling those empty spaces in between. For He is my patience, my rest on a sleepless night, my peace on a day full of screaming, my armor for this battle not just through cancer but through life. He is my reserve.

Just the shell

2008-08-18T21:04:00.004-05:00

I can look back on this entire situation with Chunks-a-lot and see how I've always had to travel down into the valleys before I can come back up the mountain again. Lately, I've been stuck in a valley. Something seems different to me....all of a sudden. I'm not really sure when it changed or even what it was that changed, but it was something and I sense it so deeply. I look at Chunks-a-lot and something seems so empty inside of her now. The happy, curious, bubbly toddler that I use to know has become tired, irritable and so subdued. We took her to the zoo today so she could delight in all of the animals, like she always does, but there was no joy in her face. She laid her head on my chest almost the entire time and shook her head "no" at almost all the animals we came across. These drugs, these horrible and potent chemotherapy drugs are sucking the life out of my little girl. And yet without them, the tumor would be taking more of her from me and at a quicker pace, as well. It just seems like I can't win for losing....and neither can she. She just keeps on fighting and fighting this ridiculous battle and everytime she gets a little bit ahead, she gets knocked down again. She was screaming in her sleep the other night and I laid there staring at her forever. I started to wonder what it felt like to walk a day in her shoes. To hurt everyday, to be tired, to have no appetite and be sick all the time and I wondered if she's used to it by now or if she even realizes how joyful her childhood should be. We grow up expecting things to be a certain way based on our experiences in life and she's growing up in a hospital where lab work and clinic visits are the highlight of her day. There's pictures painted all over the walls in the inside of the hospital and she goes around and pets all the pictures of the animals. She finds so much joy in doing this and for some reason, that makes me so incredibly sad. It's all she knows and she probably thinks they're real because she is so gentle and loving with them. How can that be her life experience so far? What is it about that situation that breaks my heart and humbles me all at the same time? This little child should be running and playing, giggling at ladybugs and eating Popsicles in the sunshine. Yet here she is, hurting and tired....just a shadow of the chunky bundle of joy that she used to be. There's still a smile and, on a good day, sometimes I'll see it quite often. And I still get attacked with her love and admiration on a daily basis, but something is still missing. Her joy, her happiness, and her childhood....they've all faded away into the background. So for now she'll hurt. For now she'll battle this cancer with everything she has in her as she becomes a shell of the person that she used to be. And hopefully one day, we can fill her life back up with all the wonderful things she has missed. I'll just have to find a way to bottle her childhood until she has a moment to not just experience it, but enjoy it...

Sometimes it just hurts

2008-08-14T21:02:00.004-05:00

My heart is so heavy tonight. I have laid on this sad excuse for a couch for the past 15 minutes trying to fall asleep and as tired as I am, the rest I crave so much seems out of my reach. Chunks-a-lot was admitted to the hospital again yesterday for the beginning of Round Seven of Chemo. Her MRI this past Tuesday showed good results, the tumor was stable and hasn't grown, so you think I would be full of hope and joy.....but I just can't seem to focus on the positive right now. I made the mistake of doing some research on Chunks-a-lot's tumor. I used to do this all the time, sometimes all night long, constantly searching for as much information as I could find and only depressing myself in the process. Ever since arriving at St. Jude's, I've managed to keep myself away from the obsessiveness of web surfing for statistics, until today. Chunks was napping and I was alone, so I started searching and was sorry that I did. Sometimes I get so caught up in the current chemo treatment and the side effects that I forget what it is we're fighting here. A tumor, a brain tumor, a grade three malignant brain tumor. The information I found was the same stuff I've read a million times, but it still felt like a blow to the chest. Children that have this type of tumor have an extremely poor prognosis. Even with complete removal, only 20% of the kids live for five years after diagnosis....the rest of them don't make it. That's in the kids who have their tumors completely or partially removed, those tumors that are deemed "inoperable" are almost always fatal. I guess I had forgotten that. Maybe it's my "selective amnesia". Some people might say that this is just Satan at work in me trying to steal God's thunder from the recent good news we have received. Maybe that's true, but honestly, sometimes it feels good just to let myself hurt. Not in a self-destructive way, it's just that I'm human and I'm this little girl's momma and my pain runs so deep that sometimes I think it might just destroy me. It never does, but sometimes it feels that way. I stepped away from the reality of everything for a long time, today I opened that door again. And it's not just my little Chunks-a-lot, it's Talks-a-lot too. He's in kindergarten now and I am missing it all. I couldn't even be there for his first day of school...that just about killed me. I'm so homesick for him and for my family. Just being able to curl up on the couch with my husband and watch a movie at night, eating breakfast with my son in the mornings, being able to cook in my own kitchen....I miss all the little things I used to so often take for granted. I've been there for all the firsts, every milestone and set back, every smile and every tear and now I'm not. My little boy is growing up and I'm missing it right now and sometimes that just hurts. I'm slowly learning that it's okay to actually admit that this situation just sucks. Sometimes it's not fun, sometimes I get tired, sometimes I start to lose my edge a little bit. I know God is there, always with me, picking up the slack even when I don't realize it. But I think He wants me to feel this hurt sometimes, I think it's important for me to remember why we're fighting this horrible battle with Chunks-a-lot. It probably seems impossible to actually cherish everyday with your child, but I swear to you that I do with her. I hug her and love her as much as she'll let me each and every day. I guess I figure that as long as she's mine, I'm going to make it count. My hurt helps me to remember why I need to keep fighting so hard with her, it helps me to continue to have sympathy for her even when she's screaming in my face, it pushes me to keep on even on those days where I don't feel like I can take one more step. Jesus always has a way of reminding me that she's in the battle of her life and I'm His vessel to help get her through this. So I just throw my hands up in the air and say, "Use me. Whatever she needs, whenever she needs it. Sustain me with your Grace, strengthen me with your endurance, carry me when I'm weak.". I'm not mother of the year or the strongest Christian you'll ever meet, seriously I'm really not anything but ordinary. The only thing that's going on here is I'm riding on the coat tails of a Savior that has blessed me with everything I need to stick it out till the end. In this tragedy I have seen the awesomeness of God. So for tonight, I'll let the tears roll down my cheeks, feeling the pain that's stabbing at my soul. I'll still believe, I'll still fight and sometimes I'll just hurt....and that's okay.

Changes

2008-08-07T16:58:00.001-05:00

Change….the one thing we keep hearing about from all the presidential hopefuls these days and yet it seems that just when one thing changes for the better, something else gives. I’ve spent the past year or so of my “mommy-hood” feeling like that, constantly yearning to better myself and still feeling like a failure. That might make it sound like I’m too hard on myself, but honestly, what mother isn’t? When Chunks-a-lot was born, she came out screaming. As those first days and nights went by, I can remember thinking, “Will she ever stop crying?”. I managed to somehow survive the first couple of weeks without completely losing it, but after awhile it started to wear on me. Almost every hour of the day was spent tending to this fussy, irritable child. I became so engrossed in her behavior that my own mood became contingent on hers. The harder and louder she screamed, the thinner my patience ran and as her irritability reached new heights, I found myself becoming quite short tempered. For some reason, my frustrations were never directed towards Chunks-a-lot. I always had this weird sense of patience and sympathy with her, but not so much with Talks-a-lot. His constant questioning and curiosity about why his baby sister was so fussy only made me feel more frustrated on the inside. I couldn’t appease his questions, I couldn’t seem to ever give him enough attention to satisfy his needs, and so in my great quest to be the best mommy I could to my irritable little girl, something else had to give……and that was my relationship with Talks-a-lot. I don’t think I ever actually realized how much things had changed between us until we got to St. Jude’s, but looking back on it now just makes me cringe. I can even remember trying to read a story to him once and having to almost shout over Chunks-a-lot as she screamed incessantly in my lap. He finally got used to having to read my lips during story time because Chunks-a-lot would cry so loudly that he couldn‘t even hear me talk. That saddens my heart more than you can imagine. Because I sit here and think about how hard this is on me, not ever realizing how hard this has been on my precious little boy. He has endured so much along with me throughout this journey of medical trauma with Chunks-a-lot. He has shown an unusual amount of patience and compassion towards her and myself. Stepping away from him for such a long period of time while we’ve been here in Memphis has changed my relationship with my son…..and not in a bad way. I feel like God is using this horrible tragedy for good in so many ways in my life and the lives of many others. I see now that I wasn’t cultivating the part of my son that needed to grow, the part of him that needed the most attention and love. I look back and see how angry I had become, not even realizing how much this was impacting those around me. If you’ve come to this blog to read about how amazing my journey has been throughout the past year, you won’t find that here. I’m not shy about my short-comings. It was a hard road to travel and being here at St. Jude’s has lightened my load tremendously and opened my eyes to so many things. Talks-a-lot was here this past weekend and he touched my heart tremendously. The moment he walked in the door, I saw Chunks-a-lot’s eyes light up as she ran to him, her little hand waving ferociously. They were so enamored with each other that it seemed the world around them just disappeared. What an awesome love they share. I envy that more than you can imagine. I watched my little girl touching her brother’s face, studying his every movement, completely taken with his presence….and I felt so blessed. These children that I have been given, these angels that God has graced me with….how can I ever satisfy the love that they both deserve on so many different levels. I held my little boy in my arms for what seemed like eternity and just soaked up the joy I felt in his embrace. I was mommy again….not the stressed out, worn down, edge of my seat person that I had become, no, I was just mommy. We walked hand-in-hand constantly throughout his visit and sometimes he would just look at me and whisper, “You’re my special mommy.”. I know my face was just beaming with pride at those words. And although I’m sad for the time that we lost together as we both endured so much this past year, I’m happy for the change our relationship has made. My life wouldn’t be half as wonderful without my little man by my side. For he has taught me so much in life. He looks at his little sister, patchy hair, a little pale, and connected to an IV line, and he only sees her as perfectly normal…..constantly commenting that she has an “adorable little face”. That’s perfect love and it’s touched my soul. So for all the lessons my 14 month old little girl has taught me, I sit back and realize all I’ve learned from my 5 year old little boy as well. Raising them has, in turn, helped me grow emotionally and spiritually. I’m still working on changing some things, but this time I’ll be sure that something more important doesn’t have to give…

Thanks for the light

2008-07-24T20:36:00.000-05:00

So many of my posts are sad and often make me tear up upon re-reading them, but today was a wonderful day. I was so prepared for the worst; vomiting, screaming, violence, etc. and I was delighted to experience quite the opposite. My mother-in-law, further referred to as Skip-boo, has been staying with me this week and we have had quite a number of adventures so far....today was no exception. Chunks-a-lot was very sweet and calm all day, much unlike the attitude she displayed the last time she had this "cocktail" of chemo drugs. She was giggly and friendly with everyone, constantly waving and blowing kisses to every stranger that passed her. The only problem she did have was some issues with constipation. Apparently, chemotherapy drugs are notorious for causing "lazy bowels" so they constantly give kids this stuff called "Miralax"....or as we call it, "Miracle Laxative". Chunks was on her third dose of that with no luck below, so I was starting to become concerned that the deed was never going to be done. We were joking about it with one of the nurses when suddenly Chunks-a-lot's face turned a deep crimson red. I realized that she was putting forth quite an effort and I felt a little bit scared as to what was going to happen next. All of a sudden we all heard this loud, "Boooomp"! I thought, surely that was not what I thought it was! I won't go into details, but let me just tell you that the Miralax lives up to its name! Chunks-a-lot kept pinching her tiny button nose shut with her fingers and saying, "Phheeeww! I pooooped!". It was absolutely precious and quite hysterical. After washing and re-washing our hands, we started on our nightly rounds through the hospital. We decided to make a stop in the nutrition room to heat up some spaghetti for the little chunk (her very favorite). After heating up the delicious canned spaghetti, I was commenting on how amazed I was that Chunks-a-lot hadn't thrown up from the Chemo. "Maybe she just isn't going to get sick this time around!", I exclaimed happily. No sooner did those words leave my mouth when she suddenly vomited four times all over the floor beside the nurses' station. I was worried that this was going to be a downward spiral of events but it didn't even seem to bother my little chunk. She just cracked a little smile and acted like nothing had even happened. They gave her some different anti-nausea medication to help control her upset tummy and within thirty minutes, she was doped up. It was absolutely precious because she could hardly even hold her head up, but she was still babbling away to anyone that would listen. Skip-boo commented that it was her first "drug experience"....and we have the pictures to prove it. We could tell she was getting extremely sleepy so I decided to put her down for the night. I stood there and rubbed her head for a couple of minutes and then tried to slowly tip-toe away, when suddenly I heard a tiny voice call out, "Momma!". I turned around to see this precious little angel lying there, eyes closed, hands held up in the air motioning for me to hug her. So I climbed into the caged crib with her and laid there until she fell into a deep sleep. I started wondering how I was ever going to get out of the bed without waking her up and tried to plan out, in my head, an escape route. I made the awesome choice of using the bedside furniture to hoist my body out of the bed and, much to my surprise, the furniture had wheels on it! The table rolled away and I landed smack on the floor. The bed is metal, so it was sure to squeak very loudly as I tumbled out. Luckily, no one was there to witness my mishap, but Skip-boo and I had a good laugh about it later on when I shared my story. It's funny because I had myself completely prepared for a bad day and God just blessed me with an amazing one instead. I laughed more today than I have in a long time and it felt so good. It's like God knows just how much I can take and then He offers me relief. So I'll spend the rest of my night hanging on to the laughter and the joy that I saw in my little girl's eyes today. It may be easy to praise God in the light, but it's days like this that give me the strength and the courage to praise Him in the darkness. Thank you Jesus for blessing me with light!

The one thing I can't fix

2008-07-19T10:30:00.001-05:00

We were alone again last night, just me and Chunks-a-lot. It was a weird feeling and didn't bring quite the rush of loneliness that I thought it would. Everything was so quiet as we walked our same beaten path along the halls of the hospital. She stopped to kiss the painted pictures of animals on the walls, danced to some music that was playing nearby and played with Mr. Potato Head and all his wonderful parts. Occasionally, she would glance up, making sure I was there and would softly mumble, "Momma". She didn't want me to pick her up, she would just flash me a smile and go back to playing. I stared at her, almost in a daze, for what seemed like an hour. I examined the shunt that runs down the back of her head, the patches of hair that have refused to fall out, her little pants that just barely stay up above her hips.....and I felt helpless. I can feed her, bathe her, care for her needs, play with her and love her, but I can't do the one thing that she desperately needs...."fix" her. You go throughout your motherhood years sometimes feeling like a champion. You can bandage a scraped knee, kiss away hurt feelings and chase out scary under-the-bed monsters; you're a super-mom. That's how I felt with Talks-a-lot, I could be everything that he needed me to be and then some. Yet here I am with this sick little girl and I'm helpless. I feel like everyday is just another piece of sand that has dropped. It's almost like we got here and were handed an hourglass with only a certain amount of time left..... and everyday is just one day less that we have with her. But then I think, no, how about this: everyday is just one more day that I get to spend with her. These people, these doctors and specialists might give us an estimate as to how much life she has left to live before this cancer overtakes her, but who are they? They do their research and their tests and they just keep searching, yet the cure still evades them. Then there's this God, this Savior, this Holy Spirit who holds the cure to all of life's ailments; physical, emotional, and spiritual. Isn't it He who gives us time on this earth and then decides when our time is done? Isn't it He who knows our life from beginning to end before we even live it? Should I put so much of my faith in a doctor's timeline or in God's merciful timing. Because I look at this little girl, this unbelievably precious little angel and I see how man has tried time and time again to "fix" her. The shunt that drains the fluid off her brain, the scars from surgeries done to correct life-threatening problems caused by her tumor, the IV line carrying Chemo into her body, destroying her while saving her at the same time. This is the way of man. Then I look to Christ and I see Him, raising her body up in resilience each time she's down, carrying her through the days of sickness and tears, filling her full of His spirit so when she should be down she's still going strong and ultimately giving her the strength and endurance to fight the battle of her life. He holds the cure in His hands, but it's all in His timing. He allowed her to fall off our bed and discover all of this, and in that, His timing saved her life. And regardless of whether or not I understand His plan, I can believe in it because God has already shown Himself in this trauma. I can pray that God will work through man to save this little girl, but ultimately it will be Jesus Christ who will give her relief from this cancer. Whether that relief be through the healing of her physical body or through the healing that comes through entering the gates of heaven, I'll let Him decide. But I won't stop fighting for her and I won't stop begging for her life. I'll still wipe her tears, I'll still bandage her scrapes and I'll still cradle her in my love, but I'll let Him "fix" her.

My prayer

2008-07-14T10:08:00.000-05:00

There have been so many times during the past six months that I have gotten worn down, so many times where I’ve reached a point where I just didn’t think I could take it anymore, this past weekend was one of those times. Chunks-a-lot is really starting to wear down from the Chemotherapy….and we’ve only just completed the first cycle. We’re supposed to have about five more months of this before her treatments slack off a little bit, there’s a part of me that wonders if she’ll be able to take five more months of this. She has been lethargic, moody, irritable, and has cried endlessly for days. There have been moments, sometimes even lasting an hour or so, where she seems her normal, bubbly self but for the most part she’s been really out of sorts. I can feel myself breaking down a little bit. It had already started to happen when she got an infection last week and was admitted to the hospital, but spending the past few days tending to a screaming, miserable child has almost put me over the edge. I took her outside yesterday evening after Lips went back home for another week of work and for the first time in awhile, it was just mommy and Chunks. We walked around together and examined the trees, poked at some ants and crunched some dead leaves in our hands. She toddled along holding my finger and pointing at all the squirrels and birds and calling them “kitty-kitty’s”. I got a little choked up watching her, she was unusually calm and happy, much unlike the Chunks-a-lot we’ve seen over the past few days. Her hair has started coming out, so her little head is getting a little patchy and her eyes are rimmed with red and cupped by faint black circles beneath. She’s lost a little bit of weight and looking at pictures of her a month ago compared with now, you can tell she’s slimmed up a bit. As I was standing there staring at her it was like I suddenly realized how sick she really is. I wanted to cry and the tears were there, but I didn’t let myself. I guess I was scared that if I started crying, I wouldn’t be able to stop. She sat down on the sidewalk, so I joined her and she seemed to be so caught up in her own world….running her finger along the pavement, watching the birds look for insects, twiddling a piece of grass between her fingers. Suddenly, she turned her face towards me and her crystal blue eyes sparkled as they met mine. She smiled, her tiny baby teeth showing through, and softly said, “Momma….”. Then she scooted closer and hugged me, patting her little hand on my back. A tear rolled down my face so slowly it almost seemed dramatic. I rubbed the back of her hair with my hand and watched as her little baby hairs floated away in the breeze. I held her for what seemed like forever, just savoring that precious moment of love between us. She pulled away and smiled at me again before falling back into the amazement of the world around her. And in that moment, for the first time, I thought about what it would truly be like to have to lose her. To not see that precious face every morning, smiling at me so innocently. To not hear her tiny voice calling out “Momma”. To miss her smell, her soft skin, her beautiful eyes and all the precious little things in between that make her my angel. The feeling of sadness I felt was unlike anything I have ever experienced. I physically and emotionally hurt in such a way that I couldn’t even move. I closed my eyes for a moment and begged God for about the millionth time to please let me keep her. I know the spill, He loves her more than I ever could, He always has our best interests at heart, her life belongs to Him; and I believe all those things to the depths of my being. But is it so wrong for me to just want to keep her? So I’ll just go on walking this impossible journey, tears in my eyes, burdens on my back, casting them all at the cross; then waking up the very next day and doing it all over again. And I’ll still end my days pleading with Jesus Christ for my little girl’s life. So it goes, “Dear Jesus, I don’t proclaim to know your purpose in all this. I don’t pretend to understand your plan and I admit that I don’t always walk each step in humbleness to You. I may not be a perfect mommy, but I love my children. This little angel is my world, she delights my life and I love her so intensely, sometimes it hurts. Please Jesus, bind this tumor, do a miracle in the healing of this little girl’s life and please let me keep her. Jesus, please let me keep her. Jesus, please let me keep her.”

Searching for joy

2008-07-11T07:25:00.001-05:00

Yesterday was a good day...well at least it was a lot better than the day before, but I still had this intense feeling of sadness that I kept stuffing in the corners of my mind. I always picture it like a wall. I'm standing on one side of this brick wall that's only a little bit taller than me and those horrible emotions filled with pain, anger and sadness have been quickly thrown to the other side of the wall...safely out of my view. But they're never really gone, it's like I always know they're there, I just refuse to acknowledge them. Chocolat is going back to B'ham today for the weekend as Lips (hubby) is coming up for the weekend. She suggested that I go back to the Target House and sleep last night instead of us both spending the night up at the hospital again. I was reluctant at first, but the thought of a full night of uninterrupted sleep was too appealing. As I was driving to the house, it was just beginning to get dark outside and the muggy air had finally begun to lift. Suddenly it was quite, almost too quiet,and a piece of that brick wall crumbled and I became overwhelmed with sadness for my little Chunks-a-lot. She had such a hard day yesterday, her eyes looked terrible, she seemed physically weak, and her disposition had it's moments of joy but for the most part, she was in a raw mood. It's one of the first times throughout this long road of sickness that's she's actually looked "sick". It just about rips my heart out of my chest to have to see her like that. It seems like we keep reaching and reaching for some relief, for some good news, for some sort of hope to save this precious little girl. And honestly, sometimes it just seems like we've come to the edge of a cliff and there is no more road to travel. There's just this feeling in my spirit, this aching in my soul and I've never felt this before. I don't know what it is but it hurts. Nothing even seems normal anymore; walking into the grocery store the other day to pick up some stuff, I felt so out of place. It was this weird feeling of, "my daughter's in the hospital, sick, miserable and in pain and I'm buying groceries.", I guess it just seems like life shouldn't carry on as normal. And somehow it does....but it never seems right. I can handle this when she's happy and full of life, but as she's started slowly wearing down from the cancer and the chemo I've seen that brick wall that's barricading my unwanted emotions slowly coming down, piece by piece by piece. And as I stare into the reality of my own pain and watch my daughter face a battle that seems larger than life, I continue to hear that still, soft voice. "I will carry you, I will give you strength, My Grace is sufficient." Sometimes there are days where I refuse to listen to that message as it requires me to actually admit to myself how much this hurts. Then there are days where the only thing that's keeping me going is knowing that I'm not the only thing that's keeping me going. So today I will face this sadness with as much courage as I can find within myself. She's worth it, she's worth every bit of fight I have left within me. I might walk with a little less joy in my steps these days as I watch my little girl struggle through such difficulty and pain. I might smile a little less and laughter might become a stranger to me, because as much as the cancer is wearing on her, watching her suffer is wearing on me. That's not to say that I'll give up, because I never will, it just means that I can actually admit now that this hurts and it hurts really bad. I won't bother to count the hard days anymore, as they have become too frequent to keep track of, but I'll never stop counting her good days. Please Jesus, give her freedom from this pain, give her relief from this suffering, bind this tumor in Your name....and we will give You the glory forever.

The strength of the fight

2008-07-09T20:31:00.000-05:00

Today was like the longest day I have ever experienced in my life. Chunks-a-lot spiked a fever the other day and her blood counts were zero, meaning she has zero ability to fight off infection, so they admitted her to the hospital. So we walked in the same meaningless path on the second floor of the hospital over and over again, almost like we were constantly trying to get somewhere and just could never get there. It's almost a maddening feeling, like you're trapped in a cage. And I love St. Jude's....I really, really do. It's just being couped up in one place for too long gets to you after awhile. So we went from one playroom to the other (there's only two) and tinkered with the different toys until she tired of that, then we'd walk some more.....then we'd play some more and around and around we went all day long. Chocolat (my mom) kept asking me, "what time is it?", and it would have only been five minutes later than the last time she had asked. We had a good laugh about that several times over the course of the day. We would become unusually excited when mealtime came around simply because it was just something different to do. Yeah, that's pretty pitiful. Finally, the day is over and why I'm not fast asleep on my flat-as-a-pancake hospital pillow, I'm not sure. I think it's just that here lately, I can't seem to escape my looming emotions. I look at Chunks-a-lot and sadness just seems to overwhelm me. I just keep telling that cancer to "leave her alone!". Not that it listens. I try to pray, but sometimes I feel redundant in my pleading with God. I'm sure He never tires of hearing my prayers but there's times where I feel like I pray and pray and pray......yet she's still sick. The tumor is still there, the cancer is still growing, her body is still suffering.... and for what. Why does this have to happen to her? I know I have said before that I've moved on past asking "why?", but sometimes my inquiries just get the better of me. Today they got the better of me. It's just so hard, sometimes it feels like it's too hard. I was running on the treadmill at the Target House the other morning while Chocolat was watching her upstairs and I found myself running faster and faster and faster. So fast that I thought my heart was going to explode within my chest. There was this tiny voice inside of me saying, "What the heck?! Slow down, you're going to give out!", but that made me angry. No, how can I give up, it might burn, it might ache, but does she give up? Does she give out? Does she let the pain get the better of her? No. She fights, she battles, she's feisty through it all. So I pushed and pushed until I literally could not make my legs move another inch and then I stopped. And there was this weird sensation inside of me that realized how parents let their children go when God calls them home. You watch them fight with everything they have, you see them push their pain thresholds to the limits and then some. You spend everyday wiping tears and comforting cries and every night kneeling at your bedside, pleading and begging with God for their life. They fight and fight until their poor little bodies just can't take it anymore and then they relent. And there must be some sort of breath that is breathed as you watch them find relief in the arms of their Savior. That's probably completely depressing and I really don't mean to be like that, it's just where I'm at right now. And I'll probably wake up in the morning and feel the exact opposite, with hope in my heart and strength in my spirit. That's what always seems to happen. But for now I think I'll sleep with the sadness that lingers so deeply in my soul. Another night spent in earnest prayer for the life of my little angel. As long as she has it in her to fight, then so will I.

Somewhere in the beginning

2008-07-04T13:22:00.000-05:00

The past couple of days have been hard….probably some of the hardest so far. Chunks-a-lot has had a really rough time with this round of Chemotherapy drugs. They gave her a cocktail of three different Chemo’s this past weekend and it really rendered havoc on her little body. She threw up almost the entire day on Sunday in spite of all the anti-nausea medicine they were pumping her full of. She’s never really been sick before so having to watch her struggle through the day was heart-wrenching for me. The sympathy and compassion that I feel for her in my heart is almost unbearable. I would do anything to relieve her from this suffering…..it’s just almost too hard to watch. One of the drugs, called Cisplatin, made it hard for her to walk for a couple of days and that seemed to frustrate her even further. It’s weird because sometimes I forget that she even has a brain tumor, I guess I’m so caught up in her current Chemo treatments and all the side effects they bring that I actually forget (momentarily) why we’re in all this mess to begin with. I feel so helpless in this situation. It seems so horrible for her to have to spend so much time in the hospital, constantly being poked at and messed with. All I want is for her to enjoy her little life, to run and play like other children, to experience the world around her…..I guess it makes me incredibly sad that she can’t do all those things right now. What’s even sadder is that she doesn’t even care. I know that sounds weird, but it’s like she just adapts to whatever we’re doing, wherever we are. Like when we’re stuck on the second floor of the hospital during her treatments, instead of becoming fussy and irritable that she can’t go outside and play like she wants to, she just makes light of it. She’ll make her “rounds” from nurses’ station to nurses’ station, waving at everyone and putting on a show for them…..it’s so sweet. Even when she’s being dragged from appointment to appointment during the week, she still keeps a smile on her face and always makes sure to entertain everyone around her. I have learned so much from her in this situation. I think all too often when life doesn’t go our way, we whine and complain and kick our feet, then here’s this little girl whose life couldn’t be harder and she never lets it get her down. How incredible is that? And that’s why these past few days have been so hard, it’s the first time throughout this process that I’ve really seen her spirit fade. You can see it in her eyes that she’s miserable. She’s really fatigued, has lost her appetite, and gets sick to her stomach sometimes. It’s so sad because as sick as she might feel, every time we pass someone in the hallway, she’ll have her little hand just a waving at them, constantly blowing kisses at everyone. Her patience astounds me, her spirit humbles me, her will to fight amazes me. She has been through so much and yet she just keeps on going and with a smile on her face, at that. I used to wonder why God allowed this in her life, how He could allow this precious little girl to have to journey through so much pain. But I don’t look at it that way anymore. For now I feel unbelievably blessed to be able to stand by this angel as she battles for her life. I learn something from her everyday, life lessons that I will carry with me forever. Christ has used her to change my life in a way I could have never imagined. There’s been some days here lately where my heart felt like it was going to explode, all of this just seems so ridiculously unfair for her. But then I know God is there beside us each and every step of the way, constantly looking out for us at every turn. As this gets harder and harder, I just can’t help but wonder if I will go home from here with her in my arms or with her in my heart. And it’s those times of almost extreme depression that I remember to just cherish the moments I have with her right now, without worrying about what might lie ahead in the future. After all, a story wouldn’t be a story without the beginning, the middle and all the little parts in between…the ending is just the culmination of all the things we’ve already experienced and the closure it brings. So I think I’ll just hang around here somewhere in the beginning of her story…..not worrying about what the next page might read. After all, at least for right now, I’m still holding her in my heart and in my arms.

In the eye of the beholder

2008-06-27T10:47:00.000-05:00

Gearing up for another round of Chemo has left me feeling as though I'm gearing up for another round of complete exhaustion. Being in a hospital for days and nights on end makes you come face to face with the reality that, yes, your child is sick. We went to a pizza party at the Target House (where we're living) last night and seeing all the cancer-stricken kids just filled me with anxiety. Chunks-a-lot has been so fortunate thus far to have not been physically affected by her cancer. She can walk, babble and carry on like a very normal one year old. She doesn't wear the consequences of her illness in an obvious external way like a lot of the kids here do. And while that should be encouraging, it actually makes me nervous. I guess I'm wondering if what I'm seeing in other children is the future that's in store for her. I think about how wonderful and amazing it is to watch your child blossom before your eyes; to be there, cheering them on as they reach every milestone and pass it with flying colors. And then I wonder how heart-wrenching it must be to have to watch your child regress. To go from walking to a wheelchair, from talking clearly to stumbling on every word, from functioning like a bright child to struggling to perform daily tasks. There's this part of me that only wants to remember Chunks-a-lot the way she is now. Happy, smiling, giggly and thriving daily. She is so full of joy and mischief and curiosity....it kills me to think that soon she might be only a shadow of who she is now. But then I see these parents with their kids, who are so obviously sick, and they don't seem to even realize how "sad" their situation seems from the outside looking in. They look at their kids like they're perfectly normal. And then it hit me--I'm already one of those parents. People pass me in the store and I can see it in their eyes, "Bless her heart.", but all I see when I look at my little angel is a precious, chunky baby. I don't even notice the two huge stitched up cuts on her head or the shunt that runs under her scalp. It's normal to me now because it's become a part of who she is to me. And I think that's how all parents are, regardless of how your child acts or looks, you only see the part of them that makes them special and makes them who they are to you. So as much as I'd like to only remember Chunks-a-lot for the way she is right now, so physically and mentally intact, what she'll go through and the external consequences it might have will only become a part of who she is. And whether you be watching your child progress from milestone to milestone or regress from functioning to struggling, they're still precious in your eyes. Even now, as I'm waiting for this second round of Chemo to begin, this "new" life is already starting to feel normal. And I'm sure people are out there thinking about us and cringing as our situation seems so dire. And as hard as it all may be, these are still memories that are making a history of who we are. My daughter may be sick, but I don't see that when I look at her. I see a child who is extremely brave and filled with more courage at the age of one than I have at 26. So as we're embarking on this next round of Chemo, I've realized that while her hair might fall out and others might see a sick child with a bald head, I'll still only see her fighting spirit and her sparkling eyes. For no matter how much her cancer takes away from who she is right now, it can never take away who she is to me. She's feisty, she's precious and she's the most beautiful child I've ever seen. And, sick or not, "Chunks-a-lot" is who she'll always be to me.

Chemotherapy and psychotherapy

2008-06-22T14:18:00.001-05:00

So yesterday was Chunks-a-lot's first day of chemo and I'll be honest, I was terrified. The drug they are using for this first infusion is called MTX and it is a bright yellow liquid. I broke out into a cold sweat watching the fluid travel up into her body...it just gave me the creeps for some reason. There's this part of me that wants to grab her up and run away, I'm not really sure where to, but somewhere far away. Even though I know that the Chemotherapy will help her, I also know that it will cause a lot of unpleasant side effects that will make her life hard. I guess I just want to rescue her, but I can't....and that breaks my heart. There's always this smell in hospitals, like a really strong oxygen smell mixed with some sort of weird spaghetti odor. That probably sounds weird, but it's just the only way I can describe it. As we were walking down the hallways of the second floor last night, dragging an IV tower full of bags behind a very active one year old, I couldn't get past that smell. Everytime I bent down to hug Chunks-a-lot or play with her in the floor, I could smell it in her hair, on her clothes....and for some reason it made me mad. It was like this weird sense of "leave my daughter alone!". And I don't think it was really the smell that was making me angry, it was just this interruption in her joyous childhood. This lingering stench that I just can't seem to get rid of. The cancer that keeps dividing, multiplying and growing....it haunts me daily. I keep walking past these little plug holes in the walls that say "Attachment for Nitrous Oxide"....I have been searching for the line that plugs into this port but my efforts seem to be in vain. I have jokingly asked the nurses if I can hook myself up for a couple of hours to escape this mental trauma, maybe provide myself with some psychotherapy while Chunks-a-lot has her chemotherapy. Yet as hard as all of this has been on me, it hasn't seemed to slow my little chunk down a bit. She has been like a little ball of joy since we got here and the entire hospital now knows her by name. I actually walked in the front doors of the hospital this morning after running back to our housing for a shower and the security guard at the front desk said, "Hey, McKaylee's mom!". I feel like my daughter has moved us to a celebrity status. So for those times where I can't find it in myself to hold back the tears any longer, she comes bouncing down the halls calling out, "Momma!" and my sadness disappears. God has given us such a wonderful gift of happiness, wonder and joy all wrapped up in this precious little girl. And as hard as it might be at times, her resilience never ceases to amaze me. I have learned so much from her bravery and her strength and it seems weird to learn life lessons from your one year old child but I think that might be the way God intended it. So the Chemo is about to be turned off and this first page in a never ending story will be complete. What have I learned from this so far? One, always bring an ample supply of narcotics and two, love your children endlessly. Even on those days where they irritate you so badly that you don't think you can stand it; bend down, look them in the eye and lose yourself in the essence of what makes them babies. Their world is so innocent and free from inhibitions and we should envy that....I know I do. Life is short, so enjoy it while you have it. Alright, I'm off to find that Nitrous Oxide again....

Hope in the shadows of darkness

2008-06-20T18:48:00.000-05:00

I don't think this situation could be any more surreal than it already is. It seems that around every corner is not just bad news, but the worst news possible. At first, Chunks-a-lot's neuro-oncologist here at St. Jude's told us that she had a 50/50 chance of overcoming this cancer. Although 50% isn't the type of statistic I would've hoped for, it was still enough for me to cling to with hope. But today, things had changed. All the doctors that deal with childhood brain cancers had met yesterday to discuss cases and Chunks-a-lot's medical file was amongst those reviewed. After much discussion, they have now told us that they don't think she has a very good chance of beating this tumor. His exact words, "I know I had previously told you that it was 50/50 but for her I'm going to have to say that the percentage would be much lower. She doesn't have a very good chance of surviving this cancer.". I felt like my entire soul just floated away, up into a world where none of this existed. For a moment I sat motionless, not even able to produce any sort of response. Numbness....it's a new state of being that I have recently discovered. To have pain and agony stabbing at you constantly, deeper each time, yet never really feeling the wound. For one of the first times in this journey, I felt hopelessness creeping in. "NO God, do not take this child from me. I love her, I adore every part of her, I relish every second of every minute I have with her. Where are you in this? How can this be her future?". I found myself pleading with God, begging Him for the relief that I have sought so often in this journey. I wish I could tell you that He answered me, but He didn't. And for the first time in a long time, I felt alone. I think about how hard it is to grow up in this corrupted world and I wonder if God is just saving my little girl from all of that. Or I wonder if the impact her life is having on people across the nation is worth her suffering. And yet who am I to decided what is "fair"? All I know is that it hurts, it hurts in a way that I have never felt before in my life. She seems so happy, so healthy and completely oblivious to the cancer that is growing in her body. Sometimes I wonder if she's scared like I am....and then I see her giggling at the nurses as they poke at her belly and I realize that she's clueless to the tragedy that surrounds her. So for her sake, I'm still listening for God's answer, for God's timing and for His grace to engulf me. Today was hard, maybe one of the hardest days thus far, but the story doesn't end here. My sadness has overwhelmed me but I can't let this be the day where I give up. So I'll still stand by her crib at night watching her chest rise and fall and thanking God for each breath. I'll still watch every step she takes, knowing that it's by God's grace that she is still doing this well. And I'll still kneel by my bed each and every night and beg God for a miracle for my little McKaylee. I won't give up, I can't give up....I still believe

St. Jude's...round one

2008-06-18T09:12:00.000-05:00

So we are finally here at St. Jude's and it is so amazing. I guess I thought that being here would provide some sort of relief and although it has, it's also provided a new sense of reality that I hadn't yet experienced. I have now been face to face with the reality of childhood cancer. I walk down the halls and see kids, whose lives should be filled with baseball games and princess parties, and instead they're wearing masks and have gleaming bald heads. I cannot escape the reality that this is Chunks-a-lot's upcoming future. You would think all the chemo treatments, radiation, surgeries, etc. would slow these kids down, but they don't miss a step. They're the happiest children I have ever been around. There are some that seem tired or constantly plagued by a sensation of coldness, but for the most part this place seems to be nothing but a world filled with hope. Hope for the hopeless...that's the message that keeps getting repeated. I no longer feel the piercing gazes of onlookers trying to figure out why my daughter has two huge cuts on her head, as the physical consequences of cancer are a way of life here. We're no longer the "odd man out", we're just part of a community of families that have the sweetest, but the sickest, children. It's encouraging to meet others who are struggling with the same daily battles, the same medical trauma...and yet it's equally depressing. You can't escape the ugly in all of this, the looming statistics, the fatality of childhood cancer and while that is extremely hard, it's also just another hurdle to jump in this journey we are traveling. I've just learned to swallow that lump in my throat and I've found myself constantly telling God, "Give me grace...give me peace...give me strength.". I won't say it's been easy, because it hasn't. But this place has provided a haven for my family and the best care for my very sick little girl. So here we go, one step ahead....sometimes two steps backwards, but then always another step ahead towards hope. She will beat this, we will beat this.....together, as a family. And hidden in this tragedy are moments and memories that I will hold close to my heart for a lifetime. I thank God daily for this wonderful place and for all the doctors that continue to provide my little girl with the best treatment possible. I look back on everything that has occurred thus far and I can see how God clearly paved the way to St. Jude's. And I find hope in knowing that tomorrow might be a little harder than today, but I'm not alone in this. For standing by my side are friends, family, doctors and most importantly Jesus Christ. And from day to day, I still proclaim that I believe in a miracle, a COMPLETE and total miracle of healing for my precious little girl!

A long road ahead

2008-06-10T20:50:00.000-05:00

So by now, I'm sure everyone has heard the latest news about Chunks-a-lot and even though it's all right in front of me, I feel like I'm watching this from a distance. Sitting in the room with the neuro-oncologist today was like a surreal moment. A Grade three Anaplastic Astrocytoma was the final diagnosis....and it only carries a 50% survival rate for her age group. How do you wrap your head around that statistic? Hearing that your child has a 50% chance of surviving is so unbelievable...I'm still in shock. We're leaving tomorrow afternoon for St. Jude's hospital and as I am packing all of our bags, I began thinking---how do you pack your life in a suitcase? We'll be gone for the better part of a year and I don't even know where to begin packing for that type of excursion. You make a list, toothbrush, toothpaste, shampoo and it just seems so ridiculous for some reason. Where is the list for a one year absence from home? I feel like I need a separate suitcase just to bundle up my emotions in. Fear, apprehension, anxiety, sadness, anger, I could go on and on. I sit here and think about how hard all of this is going to be, all the chemo and the side effects it will bring, all the ups and downs, and it just numbs me. Someone actually asked me today, "What's wrong? You sound so normal.". Yes, well someone has just put a timeline on my daughter's life and clued me in to how terribly hard the next 12 months of my life are going to be; yes, there is a large part of me that's not really here. I almost feel like a turtle who has left its shell and that's all that's left, just the tough outer covering, nothing inside. Maybe that's just some type of survival method kicking in, I'm not sure. Then I see my precious Chunks-a-lot, babbling and walking around as though she hadn't a care in the world and it breaks my heart. For she hasn't a clue to the hardships she will have to endure in the upcoming weeks and months. She's so little and chunky...it just doesn't seem right that she has to go through all of this. It breaks my heart, it absolutely devastates my soul that my little angel has this terrible cancer. I hate this tumor and the cells that are feeding its growth, I despise the pain it brings her and how much it has interrupted her childhood. She will celebrate her second birthday in a hospital and that makes me hurt beyond words. One day I'll look back on this as a memory and there's a part of me that is jealous of that. I've already been pulling from my reserves on strength and hope and I wonder where that extra strength that I'm going to need is going to come from. I am reminded of a sermon I just recently heard from Dr. Charles Stanley in which he preached over and over again, God's grace is sufficient. And so it has been and so it will be. I refuse to give up on this, I refuse to lose hope, I refuse to falter in my faith. Jesus Christ, my Savior, WILL pull us through this and He will be there to hold her hand and mine each step of the way. This is when life gets serious and when all of our faith gets tested. I can only hope to come out of this a stronger person in Christ. So for all reading, regardless of your spiritual beliefs, get on your knees and pray for this little girl. And for this next sentence, it only seems right to use her real name: I believe, we all believe, in a Miracle for McKaylee.

Heartbroken and healing

2008-06-02T21:26:00.001-05:00

Last night was a nightmare....only I was awake and it was real. I couldn't sleep...no matter how long I laid there with my eyes closed, I just couldn't seem to turn off all the thoughts that were invading my mind. Chunks-a-lot started stirring at around midnight and soon began grabbing her head and crying in her sleep. It seemed like every hour during the night passed at a torturous pace that almost made me feel crazy. Finally, at around 4 am, I drifted off only to be awaken a few hours later with the start of a new day. As the morning began, I quickly made my daily phone call to the pediatric oncologist's office hoping that the pathology results for Chunks-a-lot's tumor had come in. Even though the waiting game through all of this mess has proved to be the hardest part, I somehow found myself terrified to finally put a name to this horrible monster that has caused such havoc in my little girl's body. The nurse was extremely reluctant to tell me the diagnosis and the more I pushed the more she beat around the bush. A diagnosis had been made, but they wanted confirmation from the pathologists at John Hopkins before they released the results to us. I felt almost violated as a parent. How is it right that these people know more information about my child's health than I do? I pressed further and finally got a piece of information out of them that I just really never thought I would hear. Cancer. A word....just a word, but a word that almost led me to a complete emotional breakdown. How is this possible.....how can it be that just when it seems things can't get any worse, they do. I feel empty, void, almost like just a shell of a human being. It's just 6 days before her first birthday and instead of looking forward to this wonderful celebration, I am completely devastated. I had this conversation with God and it went something like this, "Don't you know that I'm almost used up? I almost cannot humanly take this anymore. Where are you?". The answer I received was not in the form of a booming voice or a quiet whisper, but instead just a gentle feeling that came across me. Yes, He knows....He's here with me. He's holding my hand and filling my heart with love. I might feel as though I have nothing left to give and that's fine because that's where Jesus comes in and carries me the rest of the way. I am emotionally wrecked and heartbroken, yet I have this eerie sense of peace that I doubt I would humanly posses on my own. That's the power of Christ in all of this. And this isn't a "church answer" or a "christian response", it's the absolute presence of Jesus Christ alive in my soul. I am now faced with this horrible reality that once seemed like such a distant possibility in the long list of things that "could" happen. I look at my precious little angel and her beautiful face and I know that Jesus loves her ten times more than I could possibly imagine. It seems cruel for her to have to endure this but that's my human perspective. God is her father and we can't possibly understand how He is working in all of this, but He is. This can't be where we give up, this is where we get serious about trusting God. She's my little girl, but she's His daughter too. I trust Him with her life, with her heart and her future. That was my next conversation with God, "She's yours. I will fight for her, but I won't fight against the One who made her.". And again, I felt His arms around me.....cradling me in peace, restoring me with hope and filling me with His spirit.

Deep thoughts

2008-05-29T22:52:00.000-05:00

I laid there for awhile tonight and tried to sleep but I just cannot. I have all these thoughts racing through my mind and they seem to have erased any feeling of exhaustion that I might have felt earlier this evening. So far during this medical journey of trauma with Chunks-a-lot, I have managed to keep my head up, only truly losing it a handful of times and then there's tonight. I suddenly feel angry, as though all this pent-up emotion has been let lose to prey upon my being. I've entertained the questions of why......why her, why MY daughter, why something so terrible as a brain tumor. And why does it have to be inoperable? Couldn't just the tumor itself have accomplished the same revival of spirituality without it having to be in a place that is inaccessible surgically? These are impossible questions, some of them even challenging to the God that has allowed this and I know better. I just find myself searching, whether it be for a cure, a "fix", a band-aid or just a peace that seems to escape me often on nights such as these. Don't get me wrong, God has provided an unreal amount of grace, mercy and patience for me and in me during this entire situation and I live off of this daily. It's not that He is not sufficient, He is. It's just that somehow I have realized how very human I am. Recently, I was questioned about whether or not God actually "created" Chunks-a-lot this way or if He merely just "allowed" it to happen; the basis of this argument being that God is incapable of creating something that is bad. But here is my question, whose eyes are we viewing this situation through, God's or our own? What makes the tumor bad? Is it the physical pain it causes my daughter sometimes on a daily basis? Is it the emotional pain it causes my entire family to watch her suffer through this? Is pain the enemy? Is it the fear that we experience as a result of our lack of faith in a holy God? Because humanly, I want to keep her. I want to watch her grow up and be there for her first date, first prom, her graduation....I want to live that with her. But God's plan is bigger. This tumor might not shrink or disappear and she might be carried home to heaven far sooner than we desire, and if so, her passing might hurt terribly but did it accomplish a greater cause? I think God creates us, designs us intricately in the womb of our mothers and when He does this, there is no attention to detail that is spared. So as He was creating her, I guess I'm not positively sure whether He allowed the tumor or actually designed it as a part of her being, but either way He has a purpose for her life and that was a part of His purpose. The tumor might bring pain but it will bring lost souls to Christ, it will revive lukewarm, stagnant Christians, it will touch hundreds if not thousands of people. In that light, is the tumor bad? And should Jesus choose to take her home to heaven then I will know with great peace in my heart that she is enjoying a much more glorious existence with her Maker than she could have ever experienced here on earth. So even though the tumor might cause death, is death really bad? Or is it sometimes a relief from the pain and burdens of this physical earth? The tumor is not the enemy, Satan is the enemy. And if we let him get a foothold in this situation, then her suffering is in vain and THAT makes me angry. But if we seek out the bigger picture, the greater purpose, God's TRUE plan in all of this and we make it count for the glory of God, then we have honored her suffering. For what, if anything, are we here for than to, one, bring lost souls to Christ and two, glorify God. I can count on two fingers how many of these things my little angel has already accomplished in her short life and that puts me to shame. I can already see God's Hand in this as He has changed me and many around me, lighting a fire in me for Christ and His kingdom....and this is just the beginning. My prayer life has been revived, my marriage has been renewed, my relationship with my son has deepened, and the lives of almost everyone in my family have been changed for the better. Through our pain and sadness we have found a renewed faith and dependence in God. I could go on with this for hours and it really fires me up, but don't let me fool you for I am still human and hurting. And I still hug my daughter every half-hour, soaking up every ounce of love from her that I possibly can. But it won't end with my pain or my tears, it will end with all of us becoming champions for Christ. And created or allowed, however you want to look at it, God is USING this and shining through this child to further His kingdom.....and I'm sorry, but there's just nothing bad about that...mm, Amen

Brotherly love

2008-05-27T10:19:00.000-05:00

Throughout this ordeal with Chunks-a-lot, I have been amazed by how mature Talks-a-lot has handled this entire situation. The first time she had surgery, he took it in stride and seemed to not be bothered in the least by her rough appearance. Since then, he has taken on a passion for the facts as he continuously shares with friends, family and complete strangers that his sister has a shunt AND a brain tumor (he always emphasizes the "and"). This time when Chunks-a-lot was admitted to the hospital, Talks-a-lot seemed to have a harder time dealing with the situation. We had plans to go to North Carolina for my husband's family reunion over the Memorial Day weekend and we were actually supposed to leave the day after Chunks-a-lot's MRI. Obviously, the surprising bad news from her scan and impending surgery the following day kept my husband and I from making the trip, but we started thinking that it might be a good idea to go ahead and still let Talks-a-lot go with his grandparents. Sometimes with kids, distractions are key in an emotional situation and that was the basis of our thinking in this ordeal. Well, Talks-a-lot was initially delighted to learn that he could still go and see his great-grandparents as this was a trip he had been looking forward to for weeks. But as the day wore on, I could tell he was starting to backtrack on his decision to leave. It was beyond obvious that there was something considerably wrong with Chunks-a-lot as they had attached these circular things to her head to use as a mapping system during surgery. And on a side note, I am relieved to know that they do actually use some high-tech tools when poking around in someone's brain. Anyhow, when Talks-a-lot saw his little sister covered in these white circles, he became visibly disturbed. Suddenly he became clingy with her, not wanting to leave her side or mine, constantly desperate for our attention. "I'll miss you so much when you're in North Carolina!" I said, knowing that he would soon be leaving the hospital in preparation for an early morning start the next day. "I don't think I want to go to the family reunion anymore, I just want to stay here.", Talks-a-lot stated as he burst into tears. "Why are you crying? What's got you so upset?", I began, "What has made you want to change your mind and not go to North Carolina?". His response came so quietly and was filled with heart-wrenching emotion, "I just love my little sister and I don't want to leave her.". At that very moment I felt like my very soul was going to explode. This little boy of only five years old was processing this situation at a level far beyond his years. His attachment to his sister has always been undeniable, but this just blew me away. Even though he actually ended up changing his mind again and going on the trip, that moment with him humbled me. I see moms and their kids all the time, going about their normal lives, getting caught up in the where and when of playdates and bible camps and whatnot. And there's times when I long for that normalcy, those days when my biggest worry was if the zoo would be overcrowded or if a party would get rained out. But then I look at all these moments that I have had the opportunity to share with my children and I think, no way. For wrapped up in all of this trauma have been shining glimpses of how wonderful both of my children are. Chunks-a-lot for her courage and resilience, Talks-a-lot for his compassion and loving heart. To watch a baby, not yet even a year old, tolerate IV needles, endless tests (some that have scary practices like being wrapped into a papoose for a CT scan) and bouncing back beautifully from extremely dangerous surgeries allows me to see that this fiery little girl has the heart of a true fighter. And to watch my son put his own wants aside to tend to his needy sister, to be patient with her emotional outbursts when she's having a bad day and to feel his arms wrap around me when he somehow just knows that mommy is sad, through this I have been given the pleasure of discovering how selfless he is and to see his servant heart. Would I have missed all this if I was so caught up in the normalcy of everyday life? Probably so. Therefore, I feel eternally blessed and grateful to be able to see my kids in all of their potential. So I'll put this down as lesson #132 learned and as an endless blessing that I will carry with me forever.

Big changes

2008-05-24T22:33:00.000-05:00

So this past Wednesday (the 21st) was Chunks-a-lot's MRI scan and it was also another day in my life that I am sure I will never forget. Sitting in the room at the Neuro-oncologist's office right after her scan was completed, I found myself full of hope for a good report. Yet as the doctor walked in, I could immediately tell something wasn't right. She didn't address the results of the scan right away, but instead started playing with Chunks-a-lot and asking us a lot of questions. I could feel the sweat in my palms accumulating as time suddenly slowed to an agonizing pace. And then, she said it.....almost in slow motion, her tumor had grown. I always thought I would emotionally lose it at this news, but instead I found myself thirsty for the facts. I think when I accept the bad news in a practical way, it helps divert my attention from the hysteria of the situation. Not only had the tumor grown, it was blocking off her right ventricle and was thus causing a huge backup of spinal fluid. The right ventricle had actually crossed the mid-line of her brain and was pushing into her left ventricle. They kept asking us, "Wasn't she displaying symptoms of pain or irritability?". Hmm....ya think?? As though I hadn't alerted them to the seizures she had had a couple of weeks back, or the extreme change in mood and problems with balance she had been exhibiting. And what was their answer to this at the time---to put her on chronic pain medicine. Sometimes doctors, as well-meaning as they might be, just frustrate the heck outta me. But the past is the past, so I'll move on. They admitted Chunks-a-lot to the hospital immediately and she had surgery the following morning to correct the problem with her ventricles. The surgery lasted 3 1/2 hours, which proved to be the most excruciating hours of my life. Knowing the long list of possible complications and risks, I was terrified that she might not even make it through the surgery, but she did....thankfully she pulled through beautifully. They were even able to finally biopsy the tumor, so in about 6 days we will be able to put a name to this monster. Another waiting game, but we're getting used to it. She was discharged directly from ICU the day after her surgery because she was recovering so well. There's so many stories that I could write about from our experiences with her in ICU, but then this post would probably take on the form of a novel, so I'll save those for a rainy day. The important thing is that she's home with us now and doing well considering that she just had major brain surgery. She is up and walking and seems to have developed a slight limp on her left side, but this could go away with time. Regardless, it seems a minor complication considering the more serious things that could have arisen from her surgery and biopsy. So now we are left with the reality that our little baby girl will have to start chemotherapy soon. We are about 98% sure that we will be heading to St. Jude's Children's Research Hospital in Memphis, TN for her treatments, as they have some of the top doctors in the world on their Pediatric Brain Tumor Team. Although this is certainly in her best interest, it will take quite a toll on us as a family. Lips (hubby and daddy) will not be able to stay with us at St. Jude's. He'll have to stay on this side of things to keep his job and make sure the bills get paid.....after all, at some point we want to have a house to come back to! Fortunately, Chocolat (momma and nannie) will be making the venture with me and the kids to Memphis, which I am sure will prove to be an enormous blessing. Even so, this is such a huge step in our lives. Nothing will ever be the same for any of us. It's like Chocolat said, how does life ever go back to normal? How hard is it going to be to have to watch my daughter go through Chemo and all the awful side effects that come along with it? How do I explain to my son why his sister is so tired or why we can only see daddy on the weekends? Where do I even begin? I have tried endlessly to make sense of all of this....to somehow rationalize this in my mind. It's just not possible. So I am left with the reality that God must see something in us that we don't think we are capable of. I keep pulling from my reserves, wondering when they're going to run out and amazingly Christ keeps allotting us grace in the measure that we need it. God keeps using people in our lives to pick us up and dust us off just when we don't think we can walk another step. And so for these reasons, I have been humbled in my relationship with Jesus. I don't profess to know God's plan in all of this, nor do I have any idea how all of this will turn out, but I can tell you one thing's for sure, God IS in control. And yes, He might take her from us far sooner than seems fair, but at least we have the promise of knowing that she is dancing with the angels instead of suffering on this earth. Whatever her future holds, the ways that God has used her to not only touch people from miles away, but to touch and change my entire family is simply amazing. For I have been given the most beautiful treasure in the world, the opportunity to watch Christ use my daughter to further His kingdom. How many people can say that. I could live till I'm 100 years old and say that I might have brought a handful of people to a relationship with Jesus, but already in her 11 month existence, I can guarantee you she has touched more than just a few lost souls. For this, I am eternally blessed. She is chunky and giggly and the most beautiful little girl I have ever laid eyes on and I will love her for as long as God allows. And hopefully I will always be able to honor her battle and suffering by being the role model for Christ that I need to be. Hm....I seem to have run out of things to say, which is amazing because I never thought that would happen. I guess when you're done....you're done

Chunks-a-lot

2008-05-20T21:36:00.000-05:00

So tomorrow is the "big day"....well, one of many anyhow. Chunks-a-lot has another MRI scan tomorrow morning to check for tumor growth. To say that we are anxious and scared would be a gross understatement; we are terrified. I can somehow get through most days without thinking about her brain tumor or the uncertainty of her future until we start rounding the corner of another MRI. It's then that I realize how horrible and scary all of this really is. I always try to imagine in my mind what the results of her scan are going to be and how I will react to the news. It drives me nuts and, for that reason, I don't expect to get much sleep tonight. She's had a series of bad days here lately and it's made things extremely hard for everyone involved. I find myself zoning out to some type of alternate reality where none of this exists.....I think that's just me trying to survive emotionally. I almost get manic, like I'll go from this high of feeling as though this tumor will disappear to feeling like it might negatively affect her well-being and her future. The whole situation seems surreal. I mean, I carried this tiny peanut in my tummy for nine months, gave birth to her on a beautiful summer day and now I'm faced with the reality that I might not get to "keep" her for as long as I would desire. How do you rationalize that? How do you not beg God every second of everyday for her life? I often take a step back and think, "Really? This is for real? My precious little angel of a daughter has a brain tumor?". I was watching her today as she was collecting all of her favorite stuffed animals and "rocking" them to sleep and I caught myself getting choked up. She is such a little girl, always caring for her little dolls and finding so much joy in all things girl-related. Sometimes, for some reason, this just makes "getting through" this a lot harder. Oh and goodness---she has these precious, chunky legs that almost seem too stubby to aide her in walking, but she manages to get around quite well. Sometimes she'll wander into another room, momentarily escaping from my view and then I'll see her little face peer around the corner and she'll start giggling and toddle back to me. I love those little moments.....those small things that are made precious simply because she's my little Chunks-a-lot. I'm sure this post is quite choppy and might not "flow" too well....but I'm just sitting here in a state of numbness and finding myself quite melancholy. I guess that's to be expected. I just can't help but think about her and smile.....and sometimes even cry. To be given such an amazing gift and know that it could be so quickly taken away is a reality that I cannot begin to prepare myself for. It makes me want to rescue her, somehow save her from this potential tragedy....and yet I cannot. So many people keep offering us different possibilities as to why she has this tumor; could it be genetics, a medicine I took while pregnant, and so on. But I just keep thinking---no way! As hard as it is to understand, this little girl was CREATED this way, brain tumor and all by the very hand of God. This isn't some sort of gross mistake or flaw, nothing goes unnoticed by Christ. I live with that reality, He gave her to me this way for a reason. So I'll just go on loving her and soaking up all the precious memories that I can for as long as I can. Who knows how many lives she will touch and how many people her life will impact. We might never know the reason God allowed this in her life, but I firmly believe that my daughter is somehow furthering the Kingdom of Jesus Christ. And for that, I am blessed. It might be hard, scary, sad and unbelievably heart-wrenching, but I know her life is and always will be in the Hands of the one who created her.

The big F-I-V-E!

2008-05-08T09:09:00.000-05:00

So today is the day, the day my little boy turns five years old! Talks-a-lot has been extremely excited about his birthday for the better part of 52 weeks, as he's been counting down the days till its arrival. He woke up with a skip in his step this morning as he wandered in my bedroom to wake me up. It was written all over his face, the excitement, the joy, the overwhelming giddiness and as I scooped him up and whispered "Happy Birthday" in his ear, his smile spread happily across his beaming face. I watched him this morning as he opened up his gift from mommy and daddy, remembering the day he was first born. I can actually still remember the sheer terror I felt when he was about to be born into this world.....in fact, I think my exact thought was, "What have I done?". Yet no one has been more surprised than me to find how wonderful being a mommy to this little person really is. He is an amazing child, truly a gift from God to two first time parents who didn't have a clue what lie ahead. If you don't know our little man like we do, here's just a few things that make him the wonderful person that he is:
*He's extremely compassionate---he has such a heart for others
*He loves Jesus and desires to please Him
*He's one of the most honest people I've ever met
*He LOVES to talk (hence the nickname Talks-a-lot)
*He enjoys being around people and meeting new people
*He's scared of spiders and bees but loves ladybugs and rolly-polly's
*He loves to watch football with Daddy
*He's extremely smart
*He is very affectionate and loving
*He adores his little sister and has more patience with her than I do sometimes!
*He is always happy and smiling
*He is eager to please and extremely obedient
These are just a few things out of the million that I could share and if you know Talks-a-lot, then you know how truly amazing he really is. So we've made it this far, all the way to five years old. There's been a lot of laughter and silliness along the way and I feel like, being a young mom, we've grown up together. I cannot imagine my life without him and find the most joy in the world out of being his mommy. Now I'll strap on my life seatbelt for the next five years!

He who is Wordy

2008-04-29T20:45:00.000-05:00

The day had been intense, the kids and I had been totally busy the whole day going from place to place, trying to create adventure and chaos wherever we went. As we were riding in the car, finally heading home, Talks-a-lot starts asking question number 1,109 while Chunks-a-lot is whining and moaning from lack of sleep. I found myself in a thick haze of brain fog as I tried to concentrate on driving while attempting to satisfy the various needs arising from my backseat. "But WHY can't I have two desserts after lunch? If I eat more food, THEN can I have more sugar? Won't it just be the same thing?", Talks-a-lot asks from a motive of pure manipulation. "Buddy, that's enough questions. You've been asking a lot of questions today and we've been super busy all day long and now Mommy is tired. Let's chill out a little bit and just have some quiet.". Although this sounds like an order, at the time it was more like begging. Apparently, children don't care if you're tired or not because the questions only continued. Why does mommy get tired, why does mommy need quiet to drive a car, what do concentrate and "going crazy" mean? Finally, I just had to ask, "Talks-a-lot, honey, don't you ever get tired of asking questions or just tire of talking in general? Because you sure do seem to have a lot to say all the time.". His eyebrows raised in a very curious expression as his voice raised to new heights, "I'm not the only one who talks a lot. Jesus talks a lot too.". Unbelievably confused, I had to press-on in this fascinating string of conversation, "What.....what do you mean? How do you know that?". "Well, that song", he began, "....in church we sing that song, ya know, 'He is Wordy.....He is Wordy". I exploded with laughter as Talks-a-lot assured me that this meant that obviously Jesus liked to talk just as much as he did. "Honey," I began, "the song says 'He is Worthy', not He is wordy!". Talks-a-lot quieted in a look that seemed almost one of defeat. No words were spoken, but I could see the wheels turning in his head as he considered this new information. Humored by these events, I enjoyed my newfound silence as Chunks-a-lot drifted off into a peaceful nap and Talks-a-lot stared out the window. Then alas...."Mommy, then what does WORTHY mean?" Ahh.....Talks-a-lot: He who is Wordy

Choosing black lungs

2008-04-21T20:12:00.001-05:00

So, I'm taking Talks-a-lot to school this morning and we get into an in-depth conversation about God. He starts asking me if God tells you what job you're going to have one day and I told him that you're supposed to pray about different job opportunities that might come your way and follow down the path God leads you. He then tells me that when he grows up he wants to work with children. I was ecstatic to hear this and assured him that was a wonderful thing to do. He then followed with, "Yes, I want to be a Mommy one day.". Hmm...I was sorry to break the news that only girls can be mommies, but he was okay with this as long as he could still be a "daddy". "Yes you can be a daddy, but that's not a job you get paid for. If you have a family, you'll have to find a job that pays you money so you can support them like your daddy does.", I explained. "Wait," he began, "does that mean when I become a daddy that my daddy will die?". Taken aback by this question, I can only assume that he must have thought that once he becomes a grown up and our job as his parents is "done", that we must just go on and die. I reassured him that life does not work that way. "No, honey Jesus decides when people die and it has nothing to do with whether you're a grown up or not. You can be any age when you die. It doesn't matter how old you are, it's all up to God." After explaining this enormous life lesson, I started to wonder if I had bitten off more than I could chew. Could this child, at only 5 years of age, possibly comprehend life in a fleeting and unpredictable way? I soon found out. For some reason, I continued on my ramblings about life and death. "You see, my GRANDmother, Mimi, was still alive when I was an adult and she'd probably still be alive today if she hadn't of made the choice to smoke." Nodding his head, Talks-a-lot agreed, "Yes, she shouldn't have made that choice to have the black lungs because then she'd still be alive and we could play with her. Did she believe in Jesus?". Surprised at this question, I began to stammer, "Uh, yes honey, I truly believe that she did!". I could see Talks-a-lot in the rear view mirror contemplating this response and noticed a joy spread across his face. "Oh well then she probably made that choice on purpose. She probably chose to smoke and get black lungs because she wanted to die so she could hurry up and go to heaven. She just wanted to get this part over with so she could get on up to heaven with Jesus. Hm...well, that's good, then." Smiling and softly laughing, I started to assure him that this wasn't the case at all, but I stopped. I was way too taken by how already, at the tender age of 5, this child can sense heaven in all its glory as a relief from this material world. If only we could all see the world through the eyes of a child, maybe we'd choose the black lungs too...

The art of the medicine giver

2008-04-20T11:47:00.000-05:00

Okay, so they put Chunks-a-lot on this new medicine called Neurontin. It was developed as an anti-seizure medicine but is now used for chronic pain, as well. She takes it three times daily and I am now realizing that I've added a new subheading under my job title of "Mommy", and that would be "Creative medicine giver". The first time I gave it to her, I just filled up the baby syringe and squirted it in her mouth. Since it was the first time we had danced this dance, Chunks-a-lot didn't know to fear the meds. It only took one time. I have tasted the medicine myself, just to see what the big deal was, and it is terrible. It tastes like straight up whiskey...which if you've read any of my other blog posts, might be a tempting treat. Although I do have some sympathy for the Chunky Monkey, it has become quite a feat to give her this medicine. My first attempt at being creative was to mix it with some baby yogurt, which worked initially until she caught on to what I was doing. I would actually lie her down on the couch and try to convince her to open her mouth like teaching a puppy a new trick. I would "zoom" and "crash" the medicine into her mouth, hoping to get an open mouth smile, but instead she kept those lips sealed shut. She even got so good that she would laugh and cry with the lips completely glued closed. Lips (the hubby) has watched my attempts several times and always has lots of "helpful" hints and tips. "Why don't you try mixing it with some propel", he would say as Chunks-a-lot is lying there spitting liquid pain medicine in my face. "Why don't you try stirring it into some baby food", Lips would suggest. So I tried it. Chocolat was over the other night and I thought, "Hmm...mixing it with baby food, what a novel idea!", right, but what baby food is potent enough to mask a whiskey taste? My choice--prunes. Let me create a mental picture of what happened next. Chunks-a-lot is lying on the couch, head close to my lap, feet in Chocolat's lap. I go in with the prune/medicine mixture, quick as a cat. My first try is a failure, but Talks-a-lot is standing close by and quickly steps in and starts making Chunks-a-lot giggle. I see the mouth open so I shove the baby syringe in and squirt a glob of the cocktail inside. What does she do? She spits.....everywhere. Immediately Chocolat starts laughing, which you should never do if you want a child to STOP doing something. So over and over again I get sprayed with prunes, staining my clothing and sticking in my hair. As I am being sprayed, Talks-a-lot is "jumping" a stuffed toy kangaroo onto Chocolat's head while asking me, "Did you see that? He went 'woooooo, wooooo'! Did you see that?? Did you see that Mommy?? Did you see it, he went 'wooooo....wooo'!". Overwhelmed by the sudden state of chaos I had found myself in, I consider dosing myself with some of this whiskey and prunes, I figure it's better than nothing but I manage to contain myself. After sharing this story with Lips, he continues to offer wonderful suggestions, especially his favorite idea of mixing it with grape juice. Let me add that Lips has never given Chunks-a-lot her medicine, he's only stood in the background and coached me from afar. So this morning, this Sunday morning, I took a stand. I got that grape juice out, I filled up that baby syringe and I left it sitting on the counter for Lips to handle. "Time for her medicine", I told Lips as I pretended to busy myself. His face contorted as he seemed baffled at the idea of actually giving her the medicine instead of just watching me do it. "How...what...how do I do it?", he asked. "Oh just lie her down and squirt it in.", I said calmly. So he lies her in his lap and tries, for quite a long time, to get her to open her mouth. She refuses, she cries (closed-mouth cry), her face turns red with anger, but she does not crack those lips. He starts blowing in her face and voila, she opens. He squirts some in and it comes right back out in his face in the form of spit. His eyes dart up at me, confused. I am secretly finding so much pleasure in this that I am giggling on the inside. He keeps working at it and working at it, sometimes glancing up at me in, what seems like, complete fear. Then he decides to just start making her as mad as possible, in hopes that she'll just exhaust herself and give up. My eyes squint, my nostrils flare and the internal laughing begins as I know this will NEVER work. Humored beyond measure, I continue to enjoy what has now become a spectator sport. Five minutes pass and after having her nose pinched shut, her face blowed in continuously and her cheeks bunched up like an over-bloused shirt, I am completely and utterly shocked as I see her finally give up and give in. That child opened her mouth, DRANK the medicine and swallowed every bit of it. My internal laughing ceased.....my pompous attitude buried itself and my new title of "creative medicine giver" was stripped away. The simplicity of man overshadowed the creativity of woman....I stand corrected and amazed. Rock on Lips...rock on

The "good drug"

2008-04-10T21:31:00.000-05:00

Once again, today was a really hard day. Chunks-a-lot had another bad night last night and then decided to get up at 5 am. That's always pleasant after an almost sleepless night. Of course, then she was extremely irritable all morning until finally, at 7 in the morning, I put her down for her first nap. I was invited to go to a spin class today by some friends that are members of a local Gold's Gym and as tired as I was, I jumped at the opportunity to get out of the house alone. Even though I left that spin class completely drenched in sweat, it was such an awesome way to relieve some stress and anxiety. The rest of the day was spent trying to appease a very irritable chunky peanut and struggling to answer life's deepest questions from none other than Talks-a-lot. Luckily, my mom (further referred to as Chocolat) got off work early and was able and willing to tackle my crazy life along side me. After waking Chunks-a-lot from her much-needed nap number three, we were off to the Olive Garden. Chunks-a-lot was greatly offended that we had put her in the car seat and decided to grace us with her far-from-delicate yelps and screams......all the way to the restaurant. There's nothing like driving in a cramped car with Chocolat coaching my driving, Talks-a-lot explaining over and over how his umbrella works and Chunks-a-lot screaming louder than any of us in the backseat. After we sat down at our table inside the restaurant, the waitress offered us some complimentary wine. Let me pause for a moment to say that it has been a very long time since I have even had a sip of alcohol of any sort. Yet as I was sitting there, staring at that dark burgundy liquid, it seemed to burn a hole in my resistance. I, very quickly, blurted out, "YES, I will have some!". Chocolat looked at me like I was losing it (which I was) but dared not say anything. The kind waitress poured a tease of wine into both of our glasses and scurried away. Chocolat went to sniff and sip her wine when, to her surprise, I grabbed my goblet and chugged it in one enormous gulp. "You're supposed to sip, my dear", was Chocolat's response to my manners; to which I quickly asked, "Are you going to finish your wine?" I only wish you could've seen the look on her face as I grabbed her glass and literally inhaled the alcohol into my veins. If I had forgotten that the children were there, Talks-a-lot soon reminded me by asking, "Is that the good drug or the bad drug?" My response? "No, that's the GOOD drug!" I'm not exactly sure why Talks-a-lot calls alcohol a drug because I always call it "the crazy juice". Oh and don't worry--- I do not condone drinking at all, especially not in front of children, but I don't think the occasional glass of wine is going to hurt anyone. Or maybe I'm just saying that to ease my conscience......who knows. Regardless, it was exactly what I needed at that moment and I guess, according to my son, I've done good drugs tonight. Hmmm.....I hope he doesn't go to school tomorrow and tell THAT to his teacher! Hah, can you imagine me trying to explain that??

What doesn't kill you....

2008-04-09T21:21:00.000-05:00

So they say, "what doesn't kill you will only make you stronger", and I wonder how true this statement is. The beginning of last week, Chunks-a-lot started screaming again in her sleep, except this time it was with a vengeance. Where before she would scream for maybe 3 hours during her sleep, it has now turned into 6 or 7 hours. Wait a minute, wouldn't that mean she screams the entire night? Ding, ding, ding, exactly right! Well, as though that wasn't bad enough she's started crying most of the day, as well. We're assuming that this change in behavior in the daylight hours is attributed to the fact that she's obviously not sleeping well at night; but oddly enough, even after a good night, she still seems to be fussy and irritable during the day. So we took her for an appointment with the neuro-oncologist who told us that she believes all of this screaming is being caused by pain from the tumor. They put her on some chronic pain medication that she will take three times a day, every day to help make her comfortable. I'm not too crazy about my 10 month old being on a daily regimen of pain medication, but I guess whatever brings her comfort is what's best. I dunno, even though we've been told before that she probably had Thalamic Pain Syndrome, just knowing that the actual tumor is causing her to become extremely symptomatic is really hard to swallow. Nighttime is a blur for me now. I lie there constantly glancing at the clock as it seems to slowly tick by. Daytime is a blur for me now. I spend my entire day either trying to be ridiculously happy and completely refusing to accept the reality before me; or I spend my day in a zombie state of depression where everything seems to make me upset. I think survival would be finding the balance between both, but I'm still trying to feel this thing out. Lips (my hubby) seems to detach himself from the emotional aspect of all this and is able to focus just on the practical issues. I always imagine that men have a switch on the inside of their bodies and when a really hard situation comes into play, they just flip their "man switch" and turn off their emotions. Geeze, I wish I could do that. It seems like, as a woman, I have 50 switches and they're always all on. Hm, maybe I should work on thinking like a man.....how easy life would be. I always find it interesting that if a TV is on and there's a man sitting in front of it, the house could be on fire and he would never realize it. Why is that? Lips will be watching the History channel and Talks-a-lot will ask him the same question 50 times and Lips won't even hear him ask it once. I actually have to go in there and say, "LIPS--answer the child!". Lips then gives me this look like, "What are you talking about?" Hah! See, totally zombied out with his "man switch" set to off! Anyways, enough of my wanderings into the male psyche. Well, to those who are reading, I would ask that you say a prayer for Chunks-a-lot. As hard as this might be on me to be losing sleep and trying to function the next day, it's got to be worse for her. I can only imagine how much pain she must be experiencing and she can't even express it to anyone in words. I just pray for her comfort because I feel totally helpless. Well, this post has certainly not been a humorous one, so I guess you can gather what kind of day I have had....obviously not one of my ridiculously happy ones. Oh well, there's always tomorrow. Today was hard, but it didn't kill me......it definitely wore me down but hopefully it also made me stronger. Well, I guess we'll find out tomorrow..

Say Cheese!

2008-04-03T11:53:00.001-05:00

So the other day I'm picking up Talks-a-lot from preschool and as his teacher is strapping him in his car seat, he says (I'll avoid using actual names to avoid any embarassment) "Teacher, do this....cheeeeese". His smile spreads from ear to ear, mouth wide open, showing all his pearly whites, not showing a hint of the tragedy that is upcoming. Happily, Teacher spreads her face into the exact same photogenic smile and, to my horror, Talks-a-lot cranes his head almost inside her mouth and, very loudly, says, "Ewww....what's wrong with your teeth?" Teacher's face seems to react with almost as much shock as my own as Talks-a-lot continues; "Why are they all messed up in there? You have some sharp ones in there that do this", he points his index and middle finger ferociously downwards as he talks, "those teeth look just like two huge arrows! Oh and look, you even have some extras in there!" Mortified, Teacher quickly closes her mouth of horrors that have now apparantly become a sideshow to my son and slams the car door shut. I can imgaine that my eyes were the size of my disbelief, but I was struggling to keep my bursts of laughter quiet. I tried to encourage Talks-a-lot not to point out other people's flaws, to which he reminded me--"But she had teeth that looked just like arrows....and she even had extras! Did you see them? They went just like this" As he sat in the backseat, once again motioning his two fingers like down-spiraling arrows, I was once again reminded by how differently children see the world. Because he wasn't making fun of her, he was simply fascinated by her mouth of arrows. Ah, how I long for the yester-year days of uncensored honesty.

The screams in the night

2008-04-02T21:38:00.000-05:00

Okay, so once again I got no sleep last night. Is it some sort of cruel joke I am living here? Let's revisit the facts; first, Chunks-a-lot has an inoperable brain tumor; second, Chunks-a-lot also has hydrocephalus and a condition called Thalamic Pain Syndrome. What does this mean? Something to the affect that the tumor putting pressure on her thalamus causes pain when she lies down at night. So what ends up happening is she screams for hours and hours and hours IN her sleep all night long. It doesn't happen every night and in fact it's so random that just when I think she's never going to do it again, BAM, she does it 5 nights in a row. So I lie there in bed, glancing at the clock every 45 minutes wondering how it's humanly possible to listen to someone scream for so long without losing your sanity. She sleeps in bed with me, safely might I add, so her screams cannot go unnoticed. So finally at about 6 am she's up for the morning, seeming to be totally oblivious to what happened the previous night. As I drag my drooping body up the stairs, I sometimes find my husband (further referred to from this point as "Lips") in our room (we sleep in different beds so he doesn't turn into a zombie at work) in our plush queen sized bed and his face is completely draped in the comforter on the bed. And I'm talking like wrapped around his face nun-style. His lips are usually swollen in the morning so they're poking out nicely as he seems completely lost in his sweet and relish dreams. This entire scene makes me murderously angry. There are times when I find him wrapped like a papoose up there and I just want to rip the covers off him and let the cold morning air stun his warm body. I attribute these dark feelings to my lack of sleep. Bless my heart. But someone's got to make the money and, lucky for me, that person is him. So I try to let my thankfulness override my desire to strum his swollen lips and wake him from his blissful sleep. And then there's Talks-a-lot. Let me tell you, kids should be locked in a room from the day they learn how to talk. I have never in my life met anyone that can talk so much. From the absolute minute he wakes up to the minute he crashes in bed, Talks-a-lot's mouth is just a going. So here I am, exhausted from no sleep, with Chunks-a-lot hanging off my hip, trying to fix breakfast one-handed, answering the same dadgum question from Talks-a-lot about 35 times. I lean over to pick up Chunk's beloved Ducky that she dropped on the floor and she spits up all over my arm and it drips onto the tile below. So I try to tear a paper towel off to clean up the mess, but can't get the stupid thing to tear on the perforated line because Chunks-a-lot is leaning over trying to grab the sink. Talks-a-lot manages to ask me how babies are made and how Jesus can be everywhere all the time-- all in the same sentence. And then Lips walks down the stairs from a peaceful nights sleep and says, "You want to fix some pancakes?". Seeing the rabid foam accumulate in my mouth, he pretends it was a joke and gets the cereal bowls out. Still doing everything one-handed, I'm wondering when he's going to offer to take 20 pound Chunks-a-lot off my hands. But being as Lips has acquired the dud-man syndrome, my predicament goes unnoticed. After dropping my spoon and the box of cereal, I finally break down and just ask Lips to take Chunks-a-lot. But Lips apparantly has dirty morning hands and therefore MUST spend the next 10 minutes in the bathroom washing them. Frustrated, I continue my morning duties alone. I struggle to enjoy some peace and quiet with my breakfast as Talks-a-lot finds a whole new subject to address: where milk comes from. Here are some direct quotes, "So the cow drinks milk and then it shoots out of its body? What kind of milk does the cow drink if the cow is making the milk....its OWN milk? So how much milk do you have to drink to make milk shoot out of your body for Chunks to drink (referring to breastfeeding)? Does your milk taste the same as cow's milk? How do they clean the milk from the cow before we drink it? Do they splash it into a bowl to get the germs out? How come those cows in Chick-fil-A always say 'Eat more chicken'?" And you can use your imagination for the rest. Just as this wonderful series of questions and answers is coming to a close, Lips makes a grand appearance from his OCD handwashing. We're now done with our breakfast, so we get up to move on to the next set of morning duties. So Lips not only gets a full 8 hours of restful sleep, nestled in his cozy burrito of covers, but now he gets to eat his breakfast in silence while reading the morning paper. Alas, I feel my dark side creeping up again....