Still

Here's a rare Jamesie with a hat picture. Before he was born Kara went on a hat buying binge, one for each outfit. I think hats were big that year or something. Of course, once he was born he had so much hair that hats were completely superfluous.

I still look at his pictures a lot. Probably more than I should. They induce a weird melancholy reverie that resonates for a while afterwards. This is not necessarily an exclusively sad emotion, James is very joyful in his pictures, we have a lot of good memories. I can place each to a time and a place when we were together and doing something much more fun than laying around in hospital beds. His newborn pictures- the picture on my bulletin board at work is from that shoot. In that one, I'm cradling him in my arms and the angle makes it look as though I'm holding him up. I remember posing for the picture, James lying down with me behind him and my arms awkwardly crooked forward to wrap around him, the photographer standing above us to create the effect in the picture where it appears that I'm dangling him stork-like into the frame. Different outfits he wore, from the polo shirt we buried him in to the madras shorts Kara bought for him in the spring. They all have a certain resonance. It was hard at first to look at all, but it comes easier now.

Yet I sometimes wonder if the pictures don't lull me into some kind of false memory. Each is frozen, a still life without context outside of memory. In real life James was never still. Taking his picture was difficult because he absolutely refused to sit still. We called him our little wiggleworm because he squirmed constantly and contorted himself into bizarre positions that strongly suggested he had a career in gymnastics ahead of him. Even in the womb, James refused to adopt the ideal position. A few weeks before he was born he was breeched and sunny side up, well past the point at which he was supposed to line up. Eventually, he grudgingly flipped around but remained stubbornly sunny side up, one of the complications along with the cord wrapped around his neck that would ultimately force his C-section. As a baby he moved around constantly, flailing his arms and aiming (unsuccessfully, fortunately) for barrel rolls at just a few weeks old. Shortly before he got sick he figured out how to inch-worm on the floor and made quick use of his new abilities. More than just his body moving his eyes were always probing, darting inquisitively from one item to the next. Except for sleeping (where he often tried to roll over) I honestly doubt that the boy spent even one minute of his life completely still.

But in the pictures he's always still. So I worry sometimes that I'm slowly displacing the reality of him with these piecemeal moments captured in photographs, played over and over in my head when I look over them. I worry that my memory of my son is calcifying into something static and untrue, the creation more of the present than the past. And I don't know what to do about that. How do you ensure the fidelity of a memory? How to you preserve all the moving parts on loop in your head, how many moments have I already lost to sleep and time? There's a very real element of fear there. I'll never forget James, clearly, but will I remember him as he was or will I slowly allow the pictures and still frames to replace the reality. On one level it's a ridiculous concern. How can I forget? On another it's frightening, yet another hallmark of just how long it's been. In the absence of new memories the preservation of old ones becomes ever more important. I say that. I even feel that sometimes. But I don't think it's true. You're not mourning simulacrum of someone you lost, not the specific way they moved or shook their head. You're mourning the sum of them, the package. That I think is harder to forget. Still, I worry. As is so often the case knowing and believing something does not necessarily translate into feeling it.

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.

Often

This is a picture of James and I from his photo shoot. It's one of my favorite pictures of us.


It still seems strange that it happened. Absolutely true, but utterly unreal. The same way you might expect to feel if confronted with a martian taking your order at Starbucks, green skinned and with a passion for the perfect macchiato. I know it happened, that it clearly is happening, but the reality seems distant sometimes, surreal. Like my life is some sort of waking Salvador Dali painting. Last weekend I went to lunch, the cemetery, and Costco, in that order. One of these things is not like the other. It's like the entire experience was plucked from some distaff universe and somehow landed in my reality, where it has no place. I keep asking myself where it goes, or what to do.

There's no context for a dead child. That's not to say it doesn't "hit home" or something like that. It certainly does, but it's not quite sure where to hit. Where do you put something like that in the catalog of life experiences? School, work, growing up, travel, deceased child. You can't categorize it and you can't somehow limit its scope. It's insidious in that way, seeping through the pores of everything that is otherwise unaffected and the same. Someone the other day greeted me by saying "Sorry for your loss." I must have looked confused because they clarified "The Baylor game" referring, of course, to a Baylor game earlier that day. A few months ago, I would have intuitively made the connection between myself, a huge Baylor fan, and Baylor losing a game. Now, the only loss I ever think of is James, no matter what the circumstance. It's the only loss that matters.

It's not that the world changed suddenly or became a different place. It didn't. It's the same as it always was. The sun rises in the east and all of that. It's just that I don't know what place James has or had in it anymore. That's part of the reason why I find I can't get rid of anything related to him, no matter how trivial. It's part of why his room sits just as he left it, and I can't even bring myself to take some memento from it. I'm afraid if those things he left are disturbed it will somehow sever his connection with this world, with us, entirely. I know that's irrational. I know that James' legacy isn't in the car seat base I stubbornly insisted on keeping in my car for months after he died, or in the clothes still laying in his hamper. James' legacy is in us, his place in our hearts.

Knowing is not always feeling though. Sometimes I get into fits of "moving on" and try to do things to expedite the process. These are almost universally poor decisions. I've actually come to the conclusion that moving on is a fairly terrible phrase in general- at best, I think we don't move on from something, we move forward with it. I'm sometimes guilty of trying to rush the process, trying to find where I'm going before I've figured out where I'm coming from. I still feel the weirdness of it keenly, the unreality of it all. Sometimes I think I must be a bystander in my own life, as if I witnessed all of these things rather than experienced them. I know that's not true of course, and the emotional resonance isn't anything close to that. It's much more devastating. It's just so unexpected. James died less than a month after he got sick. There was no contingency plan for him dying, and certainly none for surviving him. The nature of parenthood is that you plan on leaving, not being left.

So I don't always know what to do with it, and though it's been months now I'm still surprised. Eight months now and I'm still asking myself what comes next. I don't know the answer. But I'm glad I keep asking. I'm slowly coming to understand that it's not ever going to be something "normal." It's not going to harmonize with the rest of my world and experiences, a neat little "James" file tucked away in my mind. I shouldn't expect that. I'm coming to terms with it, but that does not make it any more pleasant. That said, I am thankful for every moment I was blessed with James. I am grateful for the time we had. The grief of his passing does not alleviate the joy of his life.

Thank you for your continued thoughts and prayers.

MRI

Here's a picture of Jamesie in the hospital. No matter what happened, James always kept his smile. We were very proud of him.

I had an MRI on Friday. I showed up late, despite the two or three phone calls I'd received (and screened to voicemail) telling me I needed to be there at 11:45 to get prepared. I showed up at 12:20. I was in court in the morning. However, I made no effort to leave early and committed to the hearing knowing full well it would probably cause me to run late. I'm wearing a suit and carrying my briefcase, trying to look for all the world like someone who does not belong in a hospital. I sit in the corner and whip out my phone in a studious attempt to pretend that I am somewhere else. I spend mere seconds filling out the paperwork, scrawling N/A at the top of the form and running a line down the length of the page, hastily sketched initials in place of a full signature. JMS, scribble.

I'd been tacitly avoiding the whole premise of the MRI since my doctor first told me I needed to have it. Of course I've had MRIs before- especially brain/brain stem MRIs. To get an MRI of your inner ear, there's really no other option. But not since James, and not so near where he had his, tucked away in another corner of UT Southwestern's medical center. Like his doctors, mine works and teaches at the medical school, a member of the small cadre of doctors who treat my particular condition. Microtia is just common enough that you can find at least one good doctor in most cities with a medical school. They all know each other, and are a welcome respite from run of the mill ENTs who often have no idea what they're talking about. In the waiting room there's a young boy who looks like he's on his second or third surgery. I remember the stages. This is what I worried about when Kara was pregnant, that James would be born like me. It's generally understood as a congenital, not genetic, birth defect, but the recurrence rate is much greater amongst family members than the general population. I had them check his ears at each ultrasound and still remember the palpable sense of relief I felt when he was born, running my fingers over his little ears and nose. Perfect. It never occurred to me to worry about cancer. I didn't know any better.

I consider asking my doctor whether or not he knows any of James' doctors. He would have to interact with pediatricians frequently, though I can't imagine he'd have much cause to talk to the oncologists. He called me James at our first appointment, mistaking my first name for my actual name. It's a common mistake and something that never used to bother me. I often didn't even bother to correct people I didn't think I'd see often. I always correct people now. To his credit, he either remembers or makes a note because at our second appointment he calls me Matthew. I like him already. He's mastered the low-key, candid approach that marks good bedside manner, at least for me.

I know the MRI is coming. My hearing is a little worse and I'm experiencing tinnitus in both ears. I'm also overdue as I neglected having one done after my last surgery three years ago. There really aren't a lot of other diagnostic options. There are any number of potential causes, from little cysts to something blocking my ear canal. Brain tumors are far, far down the list. The most likely cause is nothing in particular. I pick the last date proposed to me and tell no one but Kara.

The truth is just going over there bothers me a little. I take the same exit we used when James was sick, drive under the walkway that links Children's to the parking garages, the one with the Starbucks nestled awkwardly at its mouth. Past the garden where we had James' last photo shoot. I know where each and every one of his rooms is in the building, I remember every view. It's strange coming here for anything else, even though I'm going to another part of the medical center I feel the old routine tugging at me, wondering which garage I should park in and hoping my weekly pass hasn't expired.

Even though I'm over thirty minutes late, there's no delay in the MRI. If anything my tardiness means they're rushing me. The nurse takes my lateness as ignorance, because she's lecturing me sternly on what I can and cannot have on me during the MRI. I don't bother to tell her how many times I've heard the lecture or that the last time I heard that lecture my only question was how they would manage my son's IVs and needles during the procedure. He had three or four at the time. For his very last MRI, there was no lecture. It was understood that we knew. She's mad at me for being late and I give her no reason not to be. I rather prefer it this way, the less conversation between us means the less opportunities for me to remember. She flubs the first IV attempt because she picks the wrong vein and is a little too aggressive on the second. I mention that people usually have more success with my left arm and point her to the spot. She tries that and it works. My usual fear of needles is weirdly absent. I remember the way James started to squirm away from needles and nurses, his little body recoiling from being hurt again. I feel guilty.

The MRI is loud. My head nestled in a larger version of the football helmet like retainer that James had to wear. Though he was always sedated for his MRIs I can't help but wonder if the sound bothered him. At first it sounds a bit like a discordant orchestra tuning, all rhythm and no melody. Then a steady drumming, magnets whirring. They've added a mirror that provides a view of the window to alleviate claustrophobia. I appreciate that. I keep thinking of watching them take James back and the cheerful coloring of the MRIs at children's. I hope he slept through it. I hope he wasn't scared when I wasn't there to comfort him. As we walk out I catch a glimpse of my brain on the screens, looking just as it should. No tumor for me. I catch myself comparing it to James' last MRI, the tendrils of tumor wrapping around his skull, spilling down his spine. I wonder yet again why God wouldn't let us trade.

Afterwards I make my way to the doctors to confirm what I already know. The MRI looks fine, he hasn't looked at the full report yet but no worries so far. There's no reason aside from the one I was born with that things are getting a little worse. He even has good news. He points out that there's a new hearing aid on the market that could restore hearing to my bad ear. I make an appointment to check it out and am surprisingly interested, though it's hard to be interested in experiencing something you've never missed. He gives me a supplement for tinnitus that works for some people, though as he points out in a refreshing moment of honesty the only real treatment is to get used to it. I mostly have. I'm not all that worried about it.

I've been to appointments like this before, had these kind of procedures. Since James died though, it's like the only way I can view many things, including medicine, is through what happened to him. All the benchmarks set by childhood have been replaced with those few short weeks. It makes it difficult, because I catch all the memories coming back to me each time, though I know they shouldn't. These are unrelated things, I tell myself, but still I find myself subconsciously making links, drawing myself back there. It's yet another symptom of the post-James world. Nothing is the same, everything is different. I am different. Yet as I go through all of these different experiences, I do think things are getting better. Going through James related things, like an MRI identical to the ones he had, is not easy. But afterwards I feel better. I feel less afraid of them than before, more convinced that the new benchmarks don't necessarily represent inescapable lows. I feel less avoidant, less inclined to nearly blow off an MRI or show up thirty minutes late. Different does not have to be worse. I take comfort in that.

Thank all of you for your continued thoughts and prayers.