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.

Boy

Earlier this month I went fishing. My grandfather turned 74 and we made our way down to "the lake" to celebrate. From Dallas, East and then South. There are no direct ways, just a series of close enoughs. Longview, Tyler, Kilgore, Henderson, Carthage, Tatum, Center or some combination thereof, and finally Milam, little more than a stop sign coupled with a few helpful signs pointing towards the lake. Named for Benjamin Milam, a Texas revolutionary to whom I am distantly related. The lake is Lake Toledo Bend, sprawling sixty some odd miles along the Texas-Louisiana border. It is not a conventionally pretty lake, in the way Lake Como or Tahoe are, all glassy and still. They dammed the Sabine River without federal financing, and the lack of oversight shows. The lake flooded a larger basin than they expected, and they failed to cut down many of the trees in the basin as a result. The result is a submerged forest, treeless stumps jutting out of the water at irregular intervals, dead pines and oaks lurking under the often murky water. Attempts to water-ski outside of a few well defined boat lanes would best be ill-advised at best, an invitation to wrong kind of spectacle. It is a fishing lake first and foremost. I have always loved it. Though I will never be half the fisherman either of my grandfathers were and are, I love to fish.

I first came as a boy and that is perhaps why. I remember before the house was built coming with my grandparents to look at the land, a few scrubby uncleared acres on a point. I walked right up to the edge, snapped branches from the trees and threw them out in the water, eagerly waiting to see how long it would take them to get caught back in the mess of limbs clinging to the bank. Later, fishing from the pier that came before the house and sleeping in a trailer. Then, the house slowly forming- or at least so it seemed to me at the time- from the ground, a foundation that lingered for a time, bricks, plumbing, my brother and I hopping on the tractor digging the trenches for the water pipes, me standing on the back to drive the tractor a little deeper. The excitement at being allowed to use the tractor as a bulldozer to grab chunks and rock and toss them into the water to help form a retaining wall. My brother and I grabbing runners of St. Augustine grass jutting over that same retaining wall to plant in the front yard, taking every opportunity to throw dirt at one another. There was a certain thrill in all of it, the kind of thrill that is easily captured when you're boy, as a sense of unfiltered exhilaration permeates the entire experience. Catching bees in a jar and wondering if they'll make honey if you stick a few leafs of clover in. The absolute conviction that the scrap metal in the field behind your house can be turned into a shield, sword, or fort. The idea that if you throw a branch into a dammed lake it will somehow find its way to the ocean. I have grown older and traveled far from here. I have seen many lakes lauded by guidebooks, the glassy stillness of Lake Tahoe, rustic and ringed with mountains, casinos, and ski lodges; the placid calm of Como, villas littering the shore like a pageant; Lake Lucerne, an alpine fastness, the Lake itself somehow hiding amongst impossibly steep peaks. Yet despite all of that, none of them have ever filled me with the same sense of wonder I felt as a boy at Lake Toledo Bend, pulling blue gilled bream from the bank or gliding along the shore in a bank trying to ferret out a bed of "white perch."

I was reminded of that on my most recent trip to the lake, and I started to wonder what kind of boyhood James would have had. What would he have found wonder in? What kind of boy would he have been? Quiet, competitive and stubborn like me? Social and forgiving like my brother? What would he have looked like? How would his features have continued to come together? He looked so much like Kara, even in our 4D ultrasounds I could make out her features in his face. When he was born there was no doubt. Hair just like Kara had when she was a baby. Cheeks and nose like Kara. Blue eyes I used to humor myself and say looked more like my blue than hers. You can buy a program on the internet that ages faces, which I think renders an image similar to those that appear on milk cartons. I couldn't bring myself to do it, it felt too morbid. But my mouse lingered for a while on the link. I find myself thinking about what kind of joys he would have had, what we would have shared. Would James have liked to fish and tried to learn from me, or like my brother would he have found it a little boring and looked for something more entertaining like hunting? Would he have wanted a lake to water ski on? I am missing experiences I don't even know would have ever existed. I am missing everything.

The frustrating thing about losing a child is that you don't even know what to miss. The life you are mourning is incomplete, riddled with possibility. You're left mourning a construct of the child you thought you might have had, guessing at the glimpses you had of them for what could have been. As time passes and James would have been bigger, I find myself thinking more and more about the different times in his life I willl miss, from toddler to boy. It's a frustratingly incomplete process as a result, as you're left mourning potential. I always (and with no shortage of bias) felt like James had extraordinary potential- and I think every parent thinks that about their child. It's extremely frustrating never to know if you were right or just grasping at straws, to never even have the opportunity to be exposed as being helplessly biased in a parent teacher conference. There's no resolution. I don't miss James the baby or James the boy he never was. I miss James my son, each and every moment of his life that I'll never see. Then again, I'm not sure I'd want to miss anything else, as that would be just as incomplete.

Thank you for your continued thoughts and prayers.

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.

Day Three

Here's a picture of Jamesie today. You can interpret this picture many ways, but I choose to interpret it as James' message to the tumor that he will chew it up, spit it out, and then drool on it like a Sophie. He's been much more himself today and he's sitting up well again and playing. He loves playing peek a boo with his hospital bed, he thinks it's the funniest thing ever. We are so glad that so far nothing that has happened has dampened his spirit- he's the same happy boy as ever.

I suppose I should have mentioned that Day One actually constituted two days. The days blend together when they happen all at once.

Today felt like the first day in a long time where nothing happened. No tests. No procedures. No urgency. We're in a strange state of limbo, with all the important things lingering on the horizon, the one two three of our first few days broken up by the weekend. The Doctors wanted to wait to do the surgery until Monday so that they could get the right team in place to perform the operation. I'm glad. We don't want people coming in at odd hours over the weekend to perform the most important procedure in James' fight against the tumor. We want them fresh, rested, and fully focused on our son's care. If I saw a hungover nurse anywhere near my son, the results would be unpleasant at best, and aggravated assault at worst. We're glad they're putting together a team to work on James.

Although at a slower pace, a couple of important things did happen today. First, we moved from the PICU to the neurosurgery floor. One of the great things about Children's is the level of specialization available in a hospital like this which focuses exclusively on children's care. They have an entire floor devoted to children with neurological problems requiring surgical intervention like James. Even in the PICU, the subsection of the PICU we were in focuses exclusively on neurological conditions. This means that everyone you see has seen something like this before, as people all around the country are here dealing with the same kind of problems. We are extremely blessed that it happens to be in our backyard. General practitioners simply don't see this thing very often. Our pediatrician visited us today and told us that in all of her 27 years of practice she has only had two cases of children with brain tumors- including James. I was glad to hear that the first case is now over twenty years old. Small things like that are a great comfort. The advantage of the "floor" as they call it is that we have our own bathroom (no more community showers a la freshman year at Baylor), the nurses bother James much less, the instruments are less intrusive (they mute the monitors, thank God) and that more people can visit us. We can also eat and drink here, which is nice.

The other important development today is that we discussed James' surgery with the surgeon today. He was very patient and answered all of our questions. Sadly, he wore no tie. I've come to expect magnificent ties. He used a model to show us how they will go in through the back of James' head to get at his tumor (and will not remove all of his gorgeous hair!), which rests between his cerebellum and his brain stem. They will determine the composition of the tumor and remove it by a combination of suction and incision as necessary. They will get as much as they can. Kara and I have decided not to look up the percentages on the procedure. Google is forbidden. There's no sense in knowing. I am not interested in odds. I'm only interested in James. He has to have the surgery, and we'll go from there. It's in God's hands.

The day felt a little more normal, as much as anything can be. We had a lot of visitors, all of whom loved on James, which is great. Visitors are nice, though at times it can be a bit exhausting going through the story over and over. Hence the blog, I suppose. Writing it is strangely therapeutic.. Kara displays a much higher level of grace than I do, though that's not surprising. I am amazed constantly by the amazing level of support we've received, from all corners. Someone from the church has come to pray with us everyday, and we've received meals, flowers, shower caddies, drinks, a pantry's worth of snacks, and more and more than I can remember. We appreciate everything, and we could not function nearly as well without your support.

After Monday, more pathology on the tumor will enable us to make a plan going forward with the oncologist. Again demonstrating the incredible level of specialization here, there is a pediatric oncologist who specializes in brain tumors. Our pediatrician thinks he will be in-patient here for several weeks. Kara's working on a post summarizing how we got here. It's been a long journey.