Thursday, December 18, 2008
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.
Saturday, December 13, 2008
Thursday, December 11, 2008
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.
Friday, November 21, 2008
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.
Sunday, November 16, 2008
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.
Thursday, November 6, 2008
Tuesday, October 14, 2008
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.
Wednesday, October 8, 2008
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....
Tuesday, September 23, 2008
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.
Saturday, August 30, 2008
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.
Monday, August 18, 2008
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...
Thursday, August 14, 2008
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.
Thursday, August 7, 2008
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…
Thursday, July 24, 2008
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!
Saturday, July 19, 2008
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.
Monday, July 14, 2008
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.”
Friday, July 11, 2008
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.
Wednesday, July 9, 2008
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.
Friday, July 4, 2008
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.
Friday, June 27, 2008
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.
Sunday, June 22, 2008
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....
Friday, June 20, 2008
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
Wednesday, June 18, 2008
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!
Tuesday, June 10, 2008
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.
Monday, June 2, 2008
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.
Thursday, May 29, 2008
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
Tuesday, May 27, 2008
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.