Circular

I've posted this image before, and looked at it hundreds of times more than that. It's James at the arboretum, munching. I always thought it was funny because of how warily he seems to be addressing the camera. I miss that.

Like this picture, I've noticed often lately that things seem to be on repeat. Perusing through old entries I noticed that I used some of the same words: "derailed" twice in a month. Derailed indeed. Many of the same feelings keep repeating, being resurrected, buried, and resurrected again. The longer this process goes the more I am surprised by the many twists and turns it takes. The path is never straight, pausing time and again to circle back in on itself. It reminds me more of a river than a highway, complete with oxbows and dead ends. There's no certainty about quite where you'll end up.

When I was young, my Grandfather, also James, used to take me fishing on the Red River in Louisiana. A tributary of the Mississippi River, it snakes its way leisurely from the Panhandle of Texas generally southeast until it meets the Mississippi. We particularly fished the little oxbow lakes along its way, little abandoned offshoots that never quite made it, experiments before the river took another course or overcame the obstacle in its way. It's all very vestigial. I sometimes feel that way now, running down dead ends only to come out and hunt for more.

There were no circles and abandoned paths in the grief I experienced before James died. When my grandparents died or someone similar died there was a sense of finality. Shock, yes, certainly for a while, but it passes. It was expected after all, if not when it happened then eventually. Anger, denial, bargaining, acceptance. It's the last one that causes trouble with the death of a child. You can accept that your parent dies- they had their time, their moments, their joy. It is much more difficult to accept that your child is dead. On a visceral level, I do not accept James' death. I acknowledge it certainly, but I cannot yet accept it. I cannot accept that it was his time, that is was right, that it happened for "a reason" as some people sometimes say, a well meaning if callous phrase.

So I keep circling round and round that. I can acknowledge things, even good things that have happened since James died. I've written about them here. But the fact of his death can still be incapacitating. It stands as a violation of the natural order. And so I keep circling. Round and round the little pockets of grief, cycling through all the stages in an hour or a month. People often tell me to embrace it, to give it time and to work through it, but sometimes it's hard to do that, especially when I feel like I've been there before. Sometimes it feels like an admission of defeat to pause, retreat, and recover the ground I've already walked through, circling back over and over again. But I don't know what else to do.

I know part of it is just accepting that there is no "acceptance" I'm likely to stumble upon. I'm not going to wake up one day and decide "Huh, well I guess it's ok my son died. That wasn't that bad." Because it was that bad. I think a better, more reasonable goal might be hoping I can accept that I won't be accepting it, but that I might accept that there's not a timeline, not an easy answer, and that I'm never going to "accept" what happened- that I'm not going to come to the apparently zen state described in the pamphlets in which I'm sublimely "at peace" with everything. A more achievable goal might be that I can accept that I will live with it. I don't know what that looks like, but I'm curious enough to keep looking. So I'll keep circling until the path works itself out. I'd rather do that than rush to a goal I'm not sure of.

Thank you for your continued thoughts and prayers.

Rhythm

Life has a natural sense of forward progress. There's a natural rhythm to it. You're born. You grow up, mingle with other kids and scrape your knees. You play games and dream of a day when you can spend one more hour exploring the creek, the woods, or whatever it might be. You go to school and grudgingly learn from your teachers, pent-up energy bursting at the seams in the desk. Reading, writing, and arithmetic. Next to junior high and high school, all awkward bumbling and stylized socialization. Then college, laid back, philosophical, and free to do follow mood strikes you. You meet a girl with a similar bent and similar goals and you marry. Get a job, work hard, have a family.

With a few deviations, before James died my life was on course. I stumbled, sometimes badly, but I usually ended up in the right place one way or another. Good job, nice house, nice car. A beautiful little boy. The future was bright. Then James got sick, and the future died with him. I'm sure it's different for people who have more kids. If you lose one you have to keep going, you have a reason to. When you lose your only child you lose all that comes with having a family. Grandchildren, parenting, all the good reasons you had. With James went so many things. My first name is James, and my father and his father's, and so forth and so on. That's over now, two hundred years and it ends with me. James' furniture, neat and unused in his room, an empty nursery that I don't know what to do with. And so nothing happens, and the nursery remains, stocked and empty. People always bond by talking about their kids, it's a good source of common material. But I have nothing to contribute, I never had a kid. I had a baby and that baby died. My parenting stories begin and end with diapers and crawling. There's no transition to toddler. I usually say nothing. Nothing kills a good conversation like throwing your tragedy into the mix. It's not that I don't like to talk about James, I do. It's great to talk about him, and I love to hear what people thought of him. I just can't compare him to anyone else.

I'm out of sync with the life I planned. It vanished with James, and in its place is something much less appealing. Grief, loss, and all the emotions that come with it. Since we found out Kara was pregnant, James was my purpose. I think that's true of anyone with kids. You might get distracted, but when it comes down to it that's what you're doing.

My brother got married this weekend. It was lovely, if lengthy as Catholic weddings tend to be. An old downtown church full of architectural detail, like the Church I married in, but mine was Methodist instead of Catholic. The reception was enjoyable, an old theater in downtown Houston, complete with an open bar and an antique finish. Very roaring 20s. It was good to see my family and to celebrate, but I remember watching them dance, watching my cousin- 2 weeks older than James- trot down the aisle bearing the ring and feeling out of step. Out of step with where my life was supposed to be, with what I was supposed to accomplish by year 28. I imagined many tragedies, but this was never one of them. There was no how to manual, no contingency plan.

Part of this feeling is the loss of any perceived sense of control I had over my life. Although it's often an illusion, the idea that you're not just bobbing along in the waves offers a certain comfort. But that's silly. You don't control the world, and as recent events have proved to me conclusively, you often can't even control the things most important to you. I've come to the conclusion that the only thing you can really do is control how you respond to the things that happen to you. You can't control the waves, but that doesn't mean you have to drown.

That's how I feel about James sometimes. My life has been derailed, and I can either choose to drown with the vision of life I had or see what's on the other side. I'll admit I don't really know what that looks like yet. The rhythm is off, I don't expect to get back on track. I've gotten about as far as deciding that I'm interested in finding out what the new path looks like. The rest? Well, I'm not planning that far ahead anymore.

Thank all of you for your continued thoughts and prayers.

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.