Saturday, December 24, 2011

Lucky

I used to consider myself lucky. I found the baby in the king cake two years in a row back in elementary school in Louisiana (in retrospect, small plastic items and small children shouldn't mix). I won raffles in high school. I even feel I have a better than average record in rock paper scissors. Given the opportunity to take a chance, I'll usually take it. I am not risk-adverse.

Part of this is because I always thought I began life with a fair bit of bad luck, and the universe had already dealt me the worst statistical hand I was likely to get early in life. Things could only improve. I was born without a left ear, which in my case is the culmination of two interrelated birth defects, microtia and atresia. The odds are right around 1 in 10,000 births. Microtia means "little ear" and atresia means no ear canal. I was born with at best an ear lobe and nothing more, smooth skin instead of cartilage. Though the doctors in Longview where I was born thought I'd have trouble talking, that was never a problem. Hearing sometimes is. I'm almost completely deaf on my left side. Over the last few years my hearing has continued to deteriorate. I even sometimes watch TV with closed captioning now (much like your grandfather). I've never had stereo hearing and frankly don't really understand the concept- to me sounds don't come from any direction, they just come. For the last two years my "ear" has been ringing non-stop. Tinnitus, I'm told. It's exactly as annoying as you think it is.

When I was five, better doctors than the ones who said I'd have trouble talking took cartilage from one of my ribs and grafted it onto my skull in the shape of an ear. Three years later, they drilled a hole in my skull in the shape of an ear canal to help me hear. It didn't work. Two years ago I had that canal closed because it had been leaking puss for the better part of five years and I couldn't hear out of it anyway. There are more operations I could pursue, but I've opted out for now. In between these two major operations there were several smaller procedures as doctors tried to make the appropriated rib more appealing and covered it in skin grafts. It's actually quite well done, I've seen examples of doctors who tried to do this and didn't know what they were doing, mangled skulls and cartoon ears that deserve a lawyer's attention. I was very lucky to have a talented team working on me.

The odds of a James Camden are considerably lower than the odds of a James Matthew. Rhabdoid tumors, such as James', occur in about 3 out of every 1,000,000 children. The number of cases which occur in the United States every year is infinitesimal, measured at most the most in 2 digits. They are exceptionally rare, exceptionally aggressive, and only recently identified as an independent kind of tumor. This is one of the many reasons we started James' fund.

When James first got sick, as always I was convinced things would work out, that yet again my luck would hold. There were risks, but we were more than prepared to take them, and everything we read convinced us (not inaccurately) that survival rates for children with ATRTs were improving. If Children's has about two a year, and they lost the first, James will be the one that lives, an awful thought, but when it happens you cling to anything to give yourself hope. Even as his prognosis got progressively worse, I never actually believed the worst. It's just a roadblock I thought, he's going to be ok. He has to be ok. I never for one moment allowed the idea or even the concept that James would die to enter into my mind. Even when I came to know intellectually that James would die soon, I never registered it with even a fraction of the emotional impact that arrived when I saw him struggling to breathe that last day, his frame shaking as he struggled with each with jagged breath to tear enough air from the room to live.

When I considered my luck, I did so in a way that convinced me that if anything, God gave us James because he knew that Kara and I were perfectly made to be his parents, even me. That what he would go through, while horrible, would be something to which I could in a small way relate. We could bond over hospital humor I thought, share in the brotherhood of people with holes drilled in their head. One of the major side effects of his chemotherapy was likely to be hearing loss, again, I thought to myself that here too was an area where I could help James and guide him. My parents never understood what that felt like for me, I would know better for James. I thought what I went through would give me some small fraction of understanding of the childhood of doctors and hospitals he was doomed to lead, one I experienced on a much smaller scale myself. I knew what it was to be "different" as a child.

I was wrong. Wrong about my luck, wrong about God's plan, even wrong about how awful it would all be. For a while, this made me very angry. I had a better chance of winning the lottery than having a son with a rhabdoid tumor. Where's the justice in that? I felt this weird kind of reversal in my life. Once upon a time I'd see a story on the news about a family whose child had some horrific form of cancer and think to myself "that's awful" but with no understanding. With no comprehension even abstractly of the pain they were in. No grasp of the reality they faced, ensconced in hospitals and dependent upon the whims of doctors and specialists that until recently they did not know existed. It always seemed so remote. The odds of it happening, like the lottery, were so small that it was never seriously a something to consider. Then we were that story on the news. James the candidate for compassion and charity. The world changed overnight it seemed, and I was no longer a bystander, safe to exit the story at my convenience. How did that happen?

As I said, this made me angry. As with so many other things, the question is why. There's no answer. I see so many people, so many families that go through their lives with nothing happening to them. No cancer, no birth defects, no trauma. I am obscenely envious, but at the same time terribly grateful that no other set of parents should ever endure what we endured with James. I don't wish it on anyone, I'm simply jealous of how easy it seems for them. How commonplace their days appear, unremarkable. I catch myself smiling and playing with babies in the supermarket lane, their mothers looking at me strangely. I want to tell them to cherish the time they have, but I never do. They should.

The more I think on it though, the more I'm convinced there's nothing lucky about it, one way or the other. There's no plot by God to punish Kara and I, no decision to make us suffer. I don't think God acknowledges luck anyway, it seems a much more human concern. It simply is. and the only question that matters is how we respond to it. If anything, I can only think myself incredibly fortunate. I lost James, but I had eight months with that boy. Eight months as a father to my perfect little angel. How could I be luckier? He was more than I deserved, and more than I hoped for. So I don't know what I think about luck, odds, or fate. I only know what happened. And there is nothing I am more grateful for than James.

Thank you for your thoughts and prayers.

16 comments:

  1. I didn't know you were born in Longview. I was born, raised, and currently live there. Praying for you and Kara daily.

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  2. Prayed for you so hard in church last night. May you find a bit of peace today. Hugs!

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  3. Today was a hard, hard day. It's almost over.

    Praying for you and Kara and for all of your family members who love and miss your beautiful Jamesie.

    May the Prince of Peace bring you peace and comfort.

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  4. Once again I am blessed to read and "hear" your heart felt post. When you could definitely be taking another route of anger, etc, you are choosing to hear the voice of God's Spirit and Grace, and follow the path of grace He wants to lead you along.
    Keep writing!
    I will keep praying!

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  5. i understand how you feel. i'm insanely jealous of those that seem to go through life untouched by heartbreak and devastation. and while i consider myself unlucky to have lost my son, i also consider myself incredibly lucky to know him and be his mother and lucky that i got the 4.5 months that i did get with him. it's a strange feeling to feel pissed off and blessed at the same time. thinking of you, kara and Jamsie.

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