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.

The Top Floor

There is a place in the hospital where I used to go to pray. Not quite in the hospital, but on the top of the parking garage. The top floor of the Green garage, to be precise, and to avoid confusion with the blue and the purple garage. I took the stairs from the place on the fourth floor where the walkways intersect, one headed to the purple garage and still more distant parking, the other to the blue. The Starbucks is squirreled away there between the walkway and the Bright building, where the outpatient clinic for the oncology department that James never would have gone to receive treatment if he'd ever become well enough to be treated. We toured it once, and I remember looking forward to a day when James would spend only his days and not his nights at the hospital.

I took the stairs from the walkways to the top floor of the garage in the morning, after I'd grabbed coffee, double fisting venti skinny caramel macchiatos past a steady stream of doctors and nurses migrating from the garages to the hospital, bleary eyed with coffee in hand. Some would nod to me in some sort of unspoken recognition, as with my uncombed hair and inevitably stained shirts I looked exactly like what I was, someone who lived at the hospital.

At the top of the stairs I walked outside of the glass vestibule and its chilly air conditioned bubble onto the bare concrete roof of the garage, towards the edge of the railing where I rested the cups of coffee. The view was- is- spectacular, the whole Dallas skyline. The building I work in, all the others, gleaming in the sun. It was warm as well, a welcome respite from the sterile coldness of the hospital. More importantly, it was quiet. Of all the memories that have stayed with me from the hospital, one of the most enduring is of how loud the place was. Even with nothing going on, the constant whir of instruments and the steady beeping of vital signs never ceased, there was never a truly quiet moment. No one bothered to park on the top level of the garage though, so I could always count on it to be silent.

It was here that I prayed, removed from the air conditioning and the noise. I looked towards the skyline or to the interstate and begged God to heal my son. Some days I cursed him. I never close my eyes when I pray, I just think and stare into the distance, as if God will suddenly decide to stare back at me. The ritual of closed eyes and bowed heads always seemed strange to me, even as a child I couldn't imagine why God, if he was everywhere, need only be deferred to when I paid attention to him. Eyes wide open, I'd look around at those in prayer, wondering at their devotion.

Prayer does not come naturally me. There are some people for whom prayer is effortless, a natural effusion of their thoughts, feelings, and devotion. I am not one of those people. Even as a boy I remember being bored in Religion class in Catholic School, patient enough to learn the words but confused and annoyed that anyone would want to sit and say a rosary- sometimes more than once. I certainly did not have that kind of patience. Did God reward repetition? Nevertheless, like any good Catholic, the words of the Hail Mary were often used as a prophylactic litany against all manner of fears, from bad dreams to a call from the principal's office. Now and at the hour of our death, Amen. So it was strange to me to make prayer part of a conscious routine, a regular stop between the Starbucks and the James' room, steaming coffees in hand. I do not remember the first time I went, or how the routine got started, or even why I decided I'd explore the top floor of the parking garage in the first place, it simply crept into my days.

I never stayed long there, never long enough for the coffee to go cold, just long enough to utter a few words and to pray for the life I wanted James to have, the one I hoped God was somehow preparing him for. The family I hoped he'd have, the teenage rebellions I hoped would be less damaging than my own. I remember thanking him when James' surgery was a success, and asking for more successes, small ones I hoped would build into larger ones. I ended each visit with the same request "Protect my family" I asked, over and over again.

Since James died, I have often asked myself why God didn't listen to me. I have wondered why he let my boy die. Why we lost him so suddenly, before we even had a chance to register at the outpatient clinic or anywhere other than hospice. James' time in hospice was even abbreviated, our schedule with the nurse never materialized, James died too soon for schedules. I have been angry.

The more I reflect on those prayers though, the less angry I am. There, alone, I could pour out my fears, my regrets, and my guilt. I could do something for James in praying for him that I never could do in the hospital, no matter how hard I tried, and just ask for him to be well. You can't ask a doctor that question- their concerns and your questions are more granular, what to do about the extubation or the meds James is getting. Wellness is part of a grander plan, one you are aware of but has very little to do with your day to day. Perhaps God didn't answer me as I hoped he would, with a healthy James. He knew of course, that James would never be well again. But he let me talk it out, there on the roof of the parking garage with my coffee. He let me bargain and wheedle, ask for miracles and cures. He gave me that place, away from the relentless action of the hospital to collect myself, and to talk to him. He did not answer my prayer literally, but he protected my family. He took James before he suffered through chemo, before spinal taps and IV drips of toxins became routine, knowing they would never work. He let me release all my fears, my guilt to him, so that I could care for James when he needed me most. He gave us all the support we could ask for, we were swarmed with people who cared. So I am not as angry as I was. I don't think I wasted my time at the parking garage. If anything, I am glad I went. I'm glad I prayed. Sometimes though, I still wish I'd received another answer. In a lot of ways, I'm still waiting for one.