Sunday, July 25, 2010

The things you don't know

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

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

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

Friday, July 9, 2010

The shadow of death

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

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

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

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

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

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

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

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