Wednesday, December 30, 2009

What it's like to be human

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




Thursday, December 10, 2009

Let the race begin

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. 

Monday, November 23, 2009

The Potty

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...

Monday, November 9, 2009

Just life

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!  
  

Tuesday, October 20, 2009

The knight in shining armor

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.

Thursday, October 8, 2009

What a difference a year can make

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!!

Saturday, September 26, 2009

Running for a cause

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

Monday, September 21, 2009

The mosquito


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

Thursday, September 3, 2009

The power of pain


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

Monday, August 24, 2009

Earrings and a new puppy

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.

Monday, August 10, 2009

"Daddy Dizzle"

**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:



Friday, August 7, 2009

The terrible somethings..


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.

Thursday, July 23, 2009

The End

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!

Tuesday, July 21, 2009

Walking in the darkness

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."

Thursday, July 9, 2009

The shallow side

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.

Monday, June 29, 2009

The Spider


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.

Wednesday, June 17, 2009

Bubble Wrap

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!

Tuesday, June 9, 2009

The Big Two


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!

Thursday, May 28, 2009

A sweet Chunk

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.

Tuesday, May 12, 2009

The little moments in between

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..



Thursday, May 7, 2009

The Big Six


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!!!

Saturday, April 25, 2009

The tick....

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.

Wednesday, April 22, 2009

Chunks, chubs, working towards obesity...



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.

Friday, April 17, 2009

And the greatest of these is love..

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