Recognition

You lose track of what other people see in your grief. The basic human cues designed notify you of strangeness, oddness, or different behaviors in others turn off completely. You draw inside yourself, unable to look far enough past your own eyes to see what the rest of the world might. You do not see what they see in you, or how they perceive what you go through. In the first month or two after we lost James, I seriously doubt that I ever thought for one minute about what the world might think of me, or noticed how people acted around me. That filter was entirely removed.

Lately though, the social part of my brain that picks up on these things is coming back. I'm noticing a new phenomenon. The most common encounter involves someone I have not seen in a while. An acquaintance of some kind, someone whom I would say I know of, but do not necessarily know. They would likely say the same thing about me. Someone perhaps three degrees of Kevin Bacon away from me.

First, a glint of recognition. Law function? Someone's birthday party? I know you from somewhere. Names filter in. Next, greetings. Hello, how are you, how have you been? This sometimes continues for a while, and then it starts. A slowly dawning recognition in them. It starts in the eyes, slightly wider, now with some insight. Their posture shifts slightly, they become more attentive. Ah, I think to myself- they know. Then, out of nowhere, regardless of what we're talking about, they interject "I'm so sorry about what happened to your son." Pity frames their eyes now, the tone of voice softens. I never know what to say, and usually settle on thank you. It seems polite. The conversation usually ends shortly thereafter.

When James was sick, I wrote about "cancer eyes." These were the eyes people, from hospital staff to strangers, would give us when they found out James had brain cancer. Pity, mostly. The looks I get from these acquaintances are very similar "condolence eyes." Like cancer eyes, I have little patience for them. That's not to say I do not appreciate people feeling bad about what happened to James. Of course I do. but pity does not interest me. To me, that undermines the experience, it defines James only by how he died and ignores the rest of his life. I prefer sympathy, or empathy. If people want to talk about James, I'm happy to do so. People have told me they were sorry and added something, talked about it. Told me what he meant to them, or about themselves. I like to hear that. If they're just going to say the words for the sake of saying them though, I'd rather we skipped the formality.

I know this may sound harsh, that people just want to be kind. I know they're trying and do not mean anything by it. Still, I think it's important to recognize what's good to say and what's not. So I suppose I'm trying to say that. I am glad when people talk about James. I like to remember him. I love him. What I am not interested in is people saying something just for the sake of saying it. I did not notice it before, but I do now.

Thank all of you for your continued thoughts and prayers.

Football and a Fundraiser

You can't really tell in this picture. but James is wearing a Houston Texans onesie. It's the day we took him home from the hospital and we were getting ready to watch the game. As you can see, James was not particularly pleased about the sports affiliations I bequeathed on him.

One of the blogs about the Texans I used to read regularly pre-James is hosting a draft party on Friday that will benefit James' fund.  The party will be at 360 Sports Lounge in Houston on Washington Avenue at 6:00 P.M.

For those of you unfamiliar with the NFL, the draft is the process each year in which teams select college players to play for them next year. It's a big deal, especially for teams like the Texans which have historically been bad. If you're in Houston, feel free to drop by. Below is something I wrote for them. I'll warn you that some of it will only make sense if you're a Texans fan.

Though you probably haven’t noticed, I’ve been away for a while. Over the summer, my infant son developed brain cancer and passed away. I’ve been somewhat occupied.

My son was born on a Friday. My wife went into labor around midnight the night before, and our son joined us ten hours later after an emergency c-section. That Saturday, he watched his first football game. My duly maligned, long suffering Baylor Bears beat the University of Texas. I considered it auspicious, as it had been about a decade since we beat Texas in Austin. My son wore an outfit I’d purchased for the occasion, his very first clothes. My little bear. That Monday I slipped him into a Texans onesie I’d bought as soon as we found out we were having a boy and we watched the Texans play the Colts. They lost. I told him not to worry and apologized, not for the last time, for bequeathing my fandom upon him. For his first birthday party, my wife and I planned a tailgate party, to coincide with that what would have been a football Saturday.

Instead, he son died on a Saturday, 15 weeks shy of a year. We buried him on a Wednesday. Four months away from a tailgate and his first birthday. A month before he died, he was mastering the art of crawling and biting, applying the four teeth he’d acquired to anything within striking distance. Then he started throwing up and wouldn’t stop. We went into the hospital with what we assumed was a summer bug, a precautionary measure our pediatrician insisted on. Because he’d been throwing up, we thought we’d get some fluids and go. We were there for the next two weeks. In fact, we only left twice in the next month, both times for less than twenty-four hours.

No virus caused my son’s illness. Instead, a vicious tumor was lodged in his brain, tucked neatly between his brain stem and and cerebellum. An atypical teratoid rhabdoid tumor. It’s a rare tumor, the odds are a bit like winning the lottery in reverse. He was throwing up because of the immense pressure the tumor’s swelling created. A surgery removed 95% of it, the first step in what promised to be a long journey. We hoped a year of chemo would get the rest. The odds were bad but trending in our direction over time.
We never got to chemo. The tumor returned less than two weeks after the surgery, stronger and bigger than before, expanding its reach to new parts of his brain and his spine. The doctors said he never had a chance, that they had never seen a tumor so aggressive in their careers. We took him home and he died three days later in my wife’s arms. I held him until he went cold, and walked him out to the minivan the funeral home sent. It was tailor-made for such occasions with a child seat in the front seat. As if I’d ever allow my infant son to sit in the front seat of anything. I almost asked them to move him but decided that would somehow be more awkward. I bought a new car solely to avoid the possibility of a child in the front seat, an SUV with the capacity to sit three car seats in the middle seat.

I last commented on BRB two days before he got sick. Afterwards, it just fell by the wayside along with other habits and hobbies that seemed snatched from another time or another person. I followed the lockout with the casual interest of a fan who cannot avoid headlines but doesn’t care to dig. I’d long been amongst the contingent of fans that believed the NFL would find a way to slay its golden goose. It reflected my basic cynicism about the sports business model. The end of the lockout challenged my assessment- a surprising, if not robust, display of competence.

Football and I never got along to begin with. My father, grandfather, and even great-grandfather played, all for the same intermittent power of a high school team in the deep south where our family spent the last few centuries. Think "Friday Night Lights" but with pine trees. My Dad’s team went to the State Championship, but he didn’t play, the victim of a broken collarbone. My Mother’s high school (or rather, the Catholic boy’s team affiliated with her school) actually beat them, a fact she still believes entitles her to bragging rights. But my father and I, until recently, did not always get along. We had vastly different personalities. I never felt compelled to emulate him, while he never understood why I so stubbornly resisted pleasing him or anyone. We both had good points, but none of it mattered. I did not play. My brother did, a broad lineman like my father. My high school experience revolved more around anti-social endeavors. I never even attended a game.

College gave me a second chance at fandom. I had a choice between Baylor and UT. I went to Baylor because the campus was prettier in my opinion and because UT wanted me to submit applications for all sorts of subsidiary programs that I was much, much too lazy to complete. I also wanted to get the hell away from everyone I knew in High School and they all went to UT. Bizarrely enough, stumbling onto the Baylor campus and into the worst college football school in the Big 12 somehow suited me. Baylor would not win. You could reasonably expect a front row seat in the section of your choosing, the better to watch the massacre. Football became easy shorthand to make new friends and represented a common language I quickly picked up. My freshman year, Baylor beat Kansas. You laugh, but it was their first Big 12 victory in three years. My hallmates tore down the goalposts and carried them triumphantly the few miles back from the stadium to our dorm’s common room (one of the least of the Baylor football program’s many deficiencies is that it has not had an on-campus stadium in over 75 years). I loved it.

Because Baylor was so awful, the euphoria when we won was exceptional. Something appealed to me about rooting, often hopelessly, for the perennial underdog.
Fortunately for my nascent and masochistic fandom, football returned to Houston the same year I left for Baylor. Like the Bears, the Texans were not a very good football team. They were often a completely irrelevant football team. They lost in innovative ways. I felt right at home rooting for them. So began my relationship with the Houston Texans. My family picked up season tickets a few years later--my first game was the “Bush Bowl." Texans-related news browsing became a staple of my law school study breaks. Like many of you, I made the winding journey from the Chronicle to BRB. In my case, first to DGDB&D, which for some strange reason was at one point linked to from the Chronicle's website, and from there to BRB. I probably lurked for a year or two before I began commenting. Once I did, I was fortunate to join a community of equally obsessed, the long-suffering Texans fans. Nowhere else in the universe could you find people willing not just to watch DeMarcus Faggins “play” football on a regular basis but to discuss the particular horror of that experience. It was like a support group for people abused by Richard Smith and Frank Bush. I loved it and spent the next few years wasting far too much time browsing the comments section. But for life, I’m sure I would’ve enjoyed last season with you all. We sure as hell earned it.

My wife and I have created a fund in James’ memory through the Communities Foundation of Texas to help research rhabdoid tumors. As I said before, rhabdoid tumors are an extremely rare form of tumor. They were only recently distinguished from a similar but less malignant form of brain cancer, thanks to genetic sequencing of the tumor. As a result, treatments are still evolving. The positive side of this is that in the last few years there has been progress. Our goal with this fund is to help facilitate those efforts. Donations are tax deductible. Anything you can do is great. If you can’t give anything, that’s fine too. Either way, thanks for reading and thanks to Tim and BRB for doing this.

Reason

This is James from St. Patrick's day last year. He's on his second outfit of the day. We took him to the Greenville St. Patrick's day parade. Neither Kara or I are from Dallas, and neither of us had ever been to the parade before. Spoiler alert, but it's probably not the best venue to bring your five month old to. Wait 21 years, then try again.

It's funny how days like that stick in your mind. We got James ready early, but despite living less than a mile from the parade site had no idea where the parade was. Much to my bewilderment but probably appropriately, Kara insisted that James wear his sunglasses. He looked incredibly cute in them, his gummy smiles complimenting the frames. James had these big beautiful blue eyes that I always thought very striking. Kara and I both have blue eyes, but while mine are grayish and somewhat muted Kara's are a lively and almost turquoise color. It was one of the first things I noticed about her. James' were an odd, icy blue color, a combination of the two I always found striking and insisted took after my own. They really did not, I think I just possessively wanted at least some part of him to take after me, as otherwise he so strongly resembled Kara. The sunglasses made him look so different, like a whole new boy. I kept the picture as the wallpaper on my phone for months afterwards. I replaced it with one taken shortly before he died that's still there, patiently waiting for something important to happen, though nothing as important as James ever seems to.



But back to the parade. We tried the wrong part of Greenville first, a part which was blocked off, but not for the parade. It was blocked off for a temporary, holiday inspired relaxation of Dallas' open container laws, a block wide conflagration of drunken revelry, Bourbon Street for a day. The officer politely directing to us to the correct location gave James and us long looks, which should have been a sign. It was not. Before our first exit from the car to swing and miss and the wrong location, James made a huge mess and we had to change to his second outfit for the day. We tried again farther up the street and finally succeeded in finding the parade. Vast throngs of drunken revelers littered the streets and all seemed quite appreciative of James. We found a spot in front of the lingerie emporium (classy!) by Baker's Ribs and settled in to watch the parade. It was fun, but probably would have been more fun if I'd grabbed a few beers beforehand. There were other babies there, all like James completely oblivious and content to watch the adults with quiet bewilderment. James found a spot on my shoulder and we watched the sponsored floats make their past us. James was never fussy about crowds or loud noises, equally happy falling asleep in his room or at  crowded parade. After a few hours we made our way bck to the car and home, one more experience checked off our Dallas bucket list.

That was over a year ago. It's strange the details that stick with you. I could not tell you what we did the next day, or what outfit James wore the following Wednesday, but for some reason I remember with almost perfect precision every moment of that parade. I remember the way James' head felt on my shoulder. I remember the toys we gave him to play with and the bored way he surveyed the proceedings. I remember the party-goers in the high-rise office building across the street, making use of their office location in what must be the most enjoyable day of the year in that office. I remember where we parked, on University that I did not yet realize turned into Trammel and therefore offered a more direct path to my house. I remember the sunglasses I wore, Ray-Bans that I'd step on and ruin a few months later. I remember each of the outfits we changed James into as he casually destroyed each in turn. I remember the commentary I delivered to him as the parade drifted by, and my pointless explanation to him that he was just Irish enough to celebrate. We left and went home.


I sometimes wonder when the tumor arrived. I wonder if there was an exact moment when the cell mutated and why it happened. What caused it? I wonder how we didn't notice. It's a silly thing. ATRT and James' ATRT in particular represent one of the most virulent pediatric brain tumors around. Given how quickly James' tumor regrew after his surgery and the fact that his CT scan two months before his diagnosis was clear, it's almost certain that James' cancer did not arrive until shortly before his death. It did not fester inside of him for months before it manifested, it arrived quickly, debilitated him, and killed him.  There was nothing to notice before it was too late, because in James' case as soon as it happened it was too late. We just didn't know it.



Still, when I think back to days like the parade I catch myself wondering if it was already happening then. This is irrational, but it's still there. There's nothing rational about grief. The rational part of your mind is designed to collect data and translate that data into an answer. Grief defies the this kind of reasoning. There are no patterns to discern, neither deductive nor inductive logicleads to an answer. The only piece of data is death. There is no logical explanation.


Snippets of memories fill the void instead, disjointed and out of time that the mind cannot help but try to work into a narrative. But there is no narrative. There's only what happened, and what you do with that. There's no overarching theme or unifying theory of survivorship that links it all together in a neat little package. Instead, there are just memories like the parade and a thousand others, snatched out of chronological order and playing on loop. There was a time when I tried to categorize these, and obsessed about the whens and ifs I outlined above. I'm a bit better about that now. The thoughts are there of course, but I find that in isolation the memories are more enjoyable, that the memory of holding James on my shoulder on a March afternoon doesn't have to link into a larger narrative. It can just be that, and the simple joy of it need not suffer for everything that happened later. There are thousands of memories like that, and each has value on its own. There's no sense diminishing each by trying to make them all matter in the story of his death, because that's not the bigger story. The bigger story is James himself, in all his uncomplicated wonder. Of raising him and loving him. The end of the story is just that, the end, it's not the morale.

Thank you for your continued thoughts and prayers.

Waking Up

It's late, but this is a picture of James and I from Easter last year.

You lose track of things in grief. There's no future to consider and the present is simply a distraction from the all-consuming past. You forget appointments you used to keep, habits you used to have. One of the casualties of major life disruptions are major life habits, and plans from your bedtime routine to your morning drive in ritual. Your five year plans are exposed for the obvious bits of wishful thinking they always probably were. I used to make a point of checking different parenting blogs or children's health blogs, because for some silly reason I thought it was important to be a well-infomed parent. I used to read up on saving for college. I don't bother with that anymore. There are other things you change that you don't notice. When I filled out forms for things I used to list my name as "James Matthew Sikes" to avoid the inevitable James/Matthew confusion. I never do now. I fill everything in as "Matthew Sikes." No first name. Many of these decisions I did not come to consciously. They slipped into my routine casually, in much the same way that James once did.

To describe me as "Ok" about what happened to James would represent a vast, profound misstatement. I am never going to be "Ok" that my son died of brain cancer when he was eight months old. I do not expect that feeling to evolve, and I think it's important not to expect that. Things still set me off. We did our taxes last week (pushing right up against the deadline...) and there he was, automatically filled in by our helpful friends at H&R Block Online from the year before. James Camden Sikes. Son. Dependent. There's his social security number. The same one as on the form for his death certificate. There's an familiar symmetry to all of these bureaucratic forms. It turns out that if your child dies, you can still claim them as a dependent. It is not such an uncommon question that you have to talk a person about it, it's well within the questions tree of the form. We finished the taxes. And then I went into his room and had a very bad half hour.

Despite all that, I catch myself thinking more about the future. This may seem odd given my circumstances, but the future holds a certain allure. Unlike the past, the future still holds possibilities. Sometimes I still catch myself feeling like the most important part of my life has already passed with James, and the rest is doomed to be a footnote in the fictional biography I'm leaving behind. Like one of those Wikipedia biographies you run across for someone who you know exactly one thing about.

Lately though, I'm entertaining hope for more chapters. I'm thinking about what other sections I might like to add to that biography, regaining the thread of some of the things I left in midair when James got sick. I have mixed feelings about this because I have mixed feelings about feeling better at all, but by and large I think it's a good thing. This week has been hard. It's been nine months today since James died, and I'd be lying if I said I don't notice each and everyone of those anniversaries. I'm thinking more about next week though. I'm sure that's a good thing.

Thank you for your continued thoughts and prayers.

Happy Easter

Happy Easter.

I always thought Christianity did a poor job of selling its holiest day. Easter often seems like a distant second to Christmas. Christmas coincides on the Calendar (thanks to shrewd early church leaders) with the rest of the holiday season. Hard on the heels of Thanksgiving and with New Year's just around the corner, it's much more celebratory. The themes of birth, new beginnings, and celebration coincide much more naturally with a party. There are gifts for everyone, even that strange cousin you only see on Christmas. Christmas dinner recapitulates Thanksgiving with dressing, turkey, ham, sweet potatoes and more. Most if not all places are closed in observance of the holiday with a few days either way, providing a welcome break from work or school.

By many metrics, Easter compares poorly. Easter eggs and baskets filled with candy can never quite compete with wrapped presents under a tree. Easter is stranded weeks away from any other holidays, and if you grew up Catholic and in Louisiana as I did until my family moved to Texas, you'd be forgiven for believing that the real holiday comes six weeks before on Mardi Gras. The themes are more abstract and much more morbid in a literal sense. Death, crucifixion and resurrection do not have the happy natural associations of birth and new life. Many businesses and schools don't take off at all for Good Friday and Easter itself suffers from already being on a Sunday.

Yet there's really no comparison between the two. Christmas is a feast day wedged into the holiday calendar, December 25th chosen because it coincides with the old Roman/Mithraic holiday of Natalis Invicti and Christians needed a rival feast day to compete (for those of you keeping score, Mithras lost badly). Easter's day shifts because of its relationship with Passover, the last holy day celebrated by Jesus himself and the indirect origin of the Eucharist. Jesus' birth is a promise that has no context without the resurrection. The competition between Easter and Christmas for holiest day really isn't much of a competition at all. It's Easter by a mile.

Before James died, I thought very little about mortality. Although I was not much younger, I felt much younger. Life felt like it was just beginning. It doesn't feel that way anymore. What that means for religion is probably a separate post, but I find myself thinking more about Easter and what it means this year than I did before. Certainly more than Christmas. That's probably a good thing.

I hope all of you have a Happy Easter with your families. As always, thank you for your continued thoughts and prayers.

Reverse Anniversaries

Spring is here. In Texas, bluebonnets rise in the fields to make picturesque scenes; giving birth to vast seas of flowers in pastures and prairies. It's the sort of landscape Van Gogh would have painted if he lived in Texas, bright colors and blue skies. People pull over along the interstate to take pictures. If something looks nice enough to get a Texan out of there car on an interstate, you can rest assured it's special. I am biased, but there are few things in life more wonderful than a Texas spring. Weather that begs for patios, shorts, and open windows. I like to think the weather in heaven is like this.

Last spring was the prime of James' life such as it were. He had reached that age between crying and walking that our pediatrician described as "perfect." He smiled constantly, cried rarely, and was an absolute joy. We took trips to the arboretum often, taking full advantage of the family membership we bought when Kara was pregnant. James had many photo shoots there. James and the Tulips. James and the grass with Daddy shadow (an ill-advised unsanctioned shoot). One spring day James and I sat in the patio of the makeshift biergarten in the middle of the arboretum and watched the world go by for an hour or two, James munching on a mum-mum and I a nursing a beer. I remember exactly what he as wearing. Rolled up jeans. Red plaid shirt. He kept trying to twist his way towards the silverware on the edge of the table. We had a good time.

That seems like yesterday and a lifetime ago. Today is eight months and seventeen days since James died. James lived exactly eight months and seventeen days. The split doesn't seem right. The new spring seems out of place, lovely as it is. It feels premature, the distance from the summer seems off. How can it have been so long? Looking back at his life, it feels like it lasted so much longer. It was so much more busy. James getting bigger, learning new things, even his appearance, always evolving and changing. Time seemed more active, more important. The time since lacks that sense of urgency, events blend into a static haze of things rather than a progression. That's not to say nothing has happened. A lot has, both to us and the world. I've done work I'm proud of, Kara has been in school almost an entire school year. James' fund continues to grow. We had Jamie the giraffe. But somehow it doesn't feel like any of it took a long time. The emotional resonance of the time when James was here relative to the time since is not the same. The joys and frustrations of parenthood were replaced with something grimmer and more static. The permutations of grief are many, but none of them are joyful. They're all shades of the same sadness. So time feels flat, soaked up by the monotony.

Absence tempers the joy of a spring day and dims the bright sun. It saps the flavor out of life just when you ought to savor it. So it seems hard to believe we're coming into a spring without James. I haven't been to the arboretum once since he died. I probably let the membership lapse. No tulips this year. Still, things can and do get better. The bluebonnet fields are beautiful, and that beauty doesn't have to be defined by an absence. It can just be. There are a lot of things like that. When I try to look at things as they are rather than what they should be I find it improves my perspective. Looking at things as they are leaves me with memories of James that enhance an experience- "Remember when James did x" rather than detract from it "This would be so much better if James were here." It's not a perfect answer and no perfect answers exist. I'm just trying to muddle through the least of the bad ones.

Thank you for your continued thoughts and prayers.