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.

Identity

Kara signed me up for these e-mails. They're called "grief share" and they are daily. The theory is that you will receive one of these e-mails for a day, 365 in total, and at the end of the year you will have learned something about your grief. Perhaps something about yourself. I am on day 11. I started late. I wonder when I get these e-mails what Day 200 will look like. I wonder about the day when day 366 comes and no e-mail arrives. Does that mean my grief has ended? Am I finished? Of course that's silly and not at all what even the e-mails suggest. I think they know very well that a year is arbitrary, in much the same way as a decade would be. Our eight months and seventeen days was. Numbers without meaning, timelines with no context.

Almost one hundred days have passed since I first posted in this blog "Day 1" before we knew anything about rhabdoid tumors, when all we knew was the white mass on James' MRI staring back at us, a frame with the title "Seven Month Old with Brain Tumor." The Doctor stumbled on the words when Kara pointed out the tumor. There was no prefatory instruction, just "Is that a tumor?" and "Yes." I remember how committed we were to not even googling rhabdoid before we knew if James had it. Even when he was sick, we had so much hope, and James was always so happy. Why shouldn't we have hoped?

They say it takes a million cells to show up on an MRI. I wonder all the time when that first cell was born, when something wrong first happened. I wonder if there was a subtle change I missed in his behavior, if there anything at all that should have let me know that MRI shot was coming. This is foolishness of course, no one predicts a rhabdoid tumor. I know that. I do not always feel it.

Today's e-mail, Day 11, reminded me of that. "Losing a part of yourself" was the title. A man whose wife died described that he felt like someone had sliced him in two with a samurai sword, that he didn't know who he was anymore. For me, the sensation is different. Less cut in half, and more hollowed out, as if someone took a knife and scoured my chest cavity, a neat little hole where the core of me used to be. The center is missing. The sensation is one of absence. Without James, free hours reappear. There is no impediment to working long hours on the weekends, no obstacle to hours of television that you never bothered to watch before. You could develop hobbies, if only you cared. All the time serves no purpose but to remind you why it's there.

I do not always agree with the e-mails. Sometimes they catch me at an off time, or I don't care for their tone. Today's though, fit perfectly. I do feel like I lost part of myself, in many ways the best of me. The e-mail says to trust in God. I am trying. I do not have the answers, but I'm trying. Ask me again on day 366.

I met several people this week who I did not know who read this blog. Thank all of you for your support, everytime someone tells me what James meant for them or that they prayed for him I am glad to know how much he was loved.

Wallpaper

There is a picture on my- James’ iPad- of James smiling. It’s from his newborn shoot. There are two different pictures of him on the iPad. One is the smiling picture from his newborn shoot. He’s looking at the camera from his side and his eyes are wide open, mouth open, gawking at the lens. During the shoot we paused several times to try to lull him to sleep. The best, or most classic, newborn pictures are those of the sleeping, innocent child. They are designed to capture the child at his most innocent, before age and time wash away the wonder of a sleeping baby and leave you with a smiling child. James refused to sleep during his newborn shoot. We tried feeding him, rocking him, warm blankets. He knew better than to sleep, even at 11 days old. James didn’t have time to be that kind of baby. I think he knew that. He never napped much, he was always wide awake. His eyes were incredibly alert, just as they are in that picture. He always seemed so much more engaged than I thought a baby would be. Perhaps it is only that I was his father and I need reasons, explanations to provide some theme so I can justify things in retrospect. But I think it was more. The other picture on the iPad is the wallpaper picture. He’s smiling at the arboretum, sitting in front of the tulips, a hand outstretched to grab one. Joy came so easily to him, to my wonder and relief.

My Dad bought the iPad while we were in the hospital. James loved to play with phones, my Dad thought that the iPad would be something fun for him to play with during chemo. James had a tactile fascination for how responsive the touch screens were. He marveled at how easily he could manipulate them. The iPad was something we could use to entertain him during the hundreds of hours we’d spend in the hospital while James got his treatments. We eagerly loaded it up with every children’s app we could think of. Doodling apps, PBS Kids, Disney, Rattles, and more. We researched the “top” kids apps and downloaded them all in James' hospital room, liberally abusing the Hospital's free Wifi. We consulted the nurses for advice.

The apps mock me now. Eveytime I turn the iPad on to fire up hulu or check my e-mail, I feverishly scroll to the last screen where I’ve stashed all the non-kid apps. Past Elmo, the Christmas Rattle, and the Doodler James once used to trace lines across the screen. I don’t always make it. Sometimes I’ll be a touch slow, click on the doodle app and wonder that my son was once alive enough make the doodles here. I e-mail them to myself, over and over again, because I always want them at the top of my inbox, as if he just drew them the over day. If I spend all my time on James I won’t do anything else. I won’t ever delete those apps of course. I won’t do anything to materially alter the IPad, that’s inconceivable. It belonged to James, and is therefore sacrosanct.

The iPad is just one reminder. A symptom of a larger, intractable problem. A reminder of a hope, dream, and future I once had that will never be. No hours of chemo, no need to worry about ways to entertain him through long hours. No need to worry about infections. The hard work I spent studying the notebooks the chemo nurses gave us, harder than I ever studied for any exam, wasted. All of this made still more frustrating because I spent time on that instead of with him. All of these are reminders that there is nothing left of James to hold onto. The feel of his hair, the tenuous strength of his fingers grasping yours. All of that is gone, with his piercing eyes. There’s nothing to hold onto. I’m left with his newborn photo, James stubbornly mocking the photographer and refusing to sleep.

That’s not to say that there aren’t comforts. We have had a great many. James has left a legacy far greater than anything we dreamed possible. I am moved by the responses that his story has generated. Still, when I’m flicking through the touch screen to avoid laying eyes on the doodle app, I can’t help but wish I was reading a blog about someone else’s life. Someone else’s child, and not writing about my own. I would never wish what happened to James on anyone else. No one should experience this. I just wish it didn't happen at all.

As always, thank you for your prayers. They are a continuing source of strength.

Losing the Future

When a parent dies, you lose your past; when a child dies, you lose your future.

~Anonymous

I saw this quote a few days ago on a child bereavement website.  Maybe this sums up how I feel sometimes.  I guess a lot of times I feel like I have lost my future.  All of the things that I wanted to experience with James that will never be- like first steps, first words, coloring pictures.  First day of school, first dance, baseball.  Drivers license, graduations, wedding.  Grandchildren.  

Tantrums.  Scraped knees.  Broken arms.  Asserting independence.  Attitude.  As silly as it is, I wonder what his tantrums would have been like.  I am sure he would have had them.  And I am sure that they would have been exhausting!  But isn't that part of the fun looking back as a parent?  That you can tell those stories around the table when your kids are older and laugh, even though at the time the tantrums about did you in? 

Would James have given me sass when he was angry?  Or would it have been a quiet anger summed up with a slammed door?  Or maybe he would have learned to control his temper and surprised me by being completely cool, collected and articulate when upset.  That would be a stretch given his parents, but I guess it could have happened. 

There were so many things left to learn about him.  I hate that I will never know.  

So now James's future becomes what I make of it in some ways.  His legacy is completely in Matthew and I's hands.  I'm starting classes next week to finish my medical school pre requisites that I started as a freshman at Baylor.  I began pre-med, and now, 10 years later,  I'm going to try that route again.  

In order not to lose the future, for me, I have to make some sort of meaning out of all of this.  I learned a lot during our time in the hospital and I really feel like I need to be able to help other people even though I couldn't save James. 

Maybe one day I'll be able to find a way to cure this stupid tumor.  Today I am just really angry at it and wish that it didn't exist! I think that the timing of the beginning of the school year is hard.  I'm thinking about the First days of school that James will never have.  And for some reason that is hitting me harder than I thought it would. 


Tomorrow is another day, and hopefully it will be better.  I hope that those of you starting school tomorrow follow into a routine that becomes, well, a routine.  And a big thank you to all the amazing teachers out there!  You are selfless, patient individuals who sacrifice so much in order to provide excellent education.  Also, thank you to all the higher education administrators that work so incredibly hard to facilitate personal and educational growth to young adults that will shape the future of our country.  You are all in my prayers this week.