Monday, December 31, 2012


More than anything, I still catch myself off guard. A full year has come and gone without James, but I still find myself expecting him. I keep expecting reality to solidify and become made of more predictable fare, that kind that does not give itself to daydreams of toddlers and walking, speaking little boys named James; something to whitewash away memories of cancer and hospital beds, ports and tumors splashed on display screens.
I am surprised at Christmas without him. There is a palpable absence on my list of people to buy gifts for. I find myself looking wistfully at the toy aisles at stores and fighting an irrational desire to purchase a “big boy” toy to take home and put in his room. I wonder what he would have asked for if he could have asked. I wonder all of these things and I miss him terribly, with a sudden and fierce urgency that seems out of place.
The result is a sometimes lukewarm holiday cheer. I am fortunate that I have the love and support of many friends and family members. Caring, even without understanding, is a criminally underrated virtue. Yet I find myself more distant from the festivities than I might otherwise be, because I am experiencing them at a kind of third party remove, not fully committed because I simply cannot embrace them with the energy that I might have reserved for a celebration with James. It is troubling with the absence of one person becomes more important than the presence of another, but with the death of a child this is sometimes unavoidable. The family is not made to function without its parts.
Yet the world goes on. Holidays are celebrated, families grow and the calendar continues its relentless march towards the future. Immediately after James died, through the self-involved and insular lens of my grief, this seemed a great affront. The temerity of the world to continue on without pausing and recognizing how miserable it was without my little boy struck me as terribly unfair. More and more however, I take comfort in it. The world moving on means that there is always hope that good things may also happen. Though it came as a surprise in the first few months after we lost James, they do. The last year, while not without its challenges (James’ anniversary chief among them) brought unexpected joys as well. I have no doubt that the next year will as well. I look forward to those.
I will always miss him. And so, I suppose, I will always be surprised when we cannot do the things together that we would have if he were here. I will not allow that to tarnish the time we had together, and I will continue to cherish the memories we made together. More important than the fact that I will always miss him is that I will always love him. I am not at all surprised by that.
Thank you for your continued thoughts and prayers.

Thursday, November 15, 2012

Still Life

I should have taken more videos.  All told there are no more than a handful scattered here and there, cell phone videos hastily and randomly assembled in thirty seconds.  There was a video camera, but it seemed so cumbersome despite its point and click functionality. Just that one extra step that seems like one too many when a click of the camera is right at hand. The pictures are less limited. James' brief life was enthusiastically documented by first time parents and grandparents, his every waking moment a photo opportunity.  The number of videos, comparatively, is disappointing. And it's these which I find myself wishing for most now.

It gets harder to remember. Impossible to forget, but harder to remember. Pictures are by definition static. They lack the verve and the immediacy of anything moving. There is no narrative to a portrait, no forward progress. It is simply a declarative statement. Recently, many years overdue, I found myself going through pictures left to me by my grandparents. They are old, capturing people and places I have never known and in many instances cannot identify. On the back of each, in my Grandfather's careful block letters, the words "James Sikes" are written. My grandfather's name. His grandfather's. James'. In many instances there is likely a James Sikes in the photo. A James Warren, a James Franklin, I cannot know. Their names are lost to me with my grandparents, crumbled into memory. Hundreds of people before a church in what I assume is Sikes. In one, I recognize the cemetery. But the photo is old, a corner torn away by an unknown hand decades ago, and the youngest participant, a young blond girl staring with frank curiosity at the photographer, the lone individual apparently aware of him, is undoubtedly dead. In the back of my mind I wonder- when people come upon pictures of James long after I'm gone and no one is left to explain them- what statement will they make?  Young boy? Sick boy? It is hard to tell.

I find myself yearning for videos, stories that can say more about him. Because of course I could not bear for him to be forgotten. There are not many videos however. Some. I've saved most of them, or they're online. I have a bizarre amount of faith in the cloud. I sometimes worry thought that James will one day be reduced to a still life, the picture of a boy, perhaps a sick boy that has nothing to say beyond the fact that he was. I worry that the story will be lost, all the gorgeous details of James' life. His laugh. The way he bounced with joy threw his ball. The tremendous and unbridled joy in his eyes. I was blessed with a happy baby.

This thought is not entirely rational. James has a story, one preserved by the people who knew him and loved him. I am proud of his story, and I am proud of him. Still, I wonder. If only I'd used that camera a few more times, how many more stories might I have? Most of all I just miss him, and would give the world to see him do anything at all. The real stories are those of memory though. And I am fortunate to have more of those than I can forget.

Thank you for your continued thoughts and prayers.

Wednesday, October 31, 2012


This picture is from James' original birthday.

On Monday, James turned two. He was born on a Friday. I almost wrote Thursday, and it felt that way. Kara's labor began shortly after midnight on Thursday and James was born around 10 the next morning. His hair drew immediate attention of course, a full head of brown spikes with almost frosted tips, blonde highlights caught in the light that enamored the nursing staff and passerby alike. Perhaps because of this, James became an exceedingly popular baby almost instantaneously. While other babies made do with single strands of hair or bald crowns, James shamed them all in the nursery. I was irrationally proud of him. He was perfect.

I miss that sense of surprise. I miss watching him grow and wondering what came next. Wondering when he would crawl, talk or walk. I miss watching his brown hair grow out with blondish roots, his eyes slowly settling into new shades of blue. He was always changing, growing. On his birthday I thought a lot about that. I wondered how big he might be now. How fast he could walk, what words he would know. These are the easy things of course, the milestones that are clearly identifiable in baby books. As I learned from James, there a thousand others they never mention, steps along the way that matter to no one but the two of you. The first time he laughs at you (and you meant for him too). The first time you see yourself in him.

I miss getting to know him. I wonder about the toddler he would have been and the father I would have been. This year it hit me more vividly than last, when I could still imagine him much as I last remembered him. That's not feasible this year. This year he would have been so different. It bothers me most that I cannot know how, though I desperately want to.

These are small disappointments of course, stray thoughts that can bring nothing but grief. Days like that go better when I think of the overwhelming joy that accompanied his birth- when I remember how idiotically proud I was of my infant son's hair. To dwell on the rest and to speculate about the precise dimensions of my loss is an invitation to a downward spiral. I try (but do not always succeed) avoiding those.

Happy Birthday son. We miss you.

Thank all of you for your continued thoughts and prayers.

Tuesday, October 23, 2012

It hasn't been a while

"I know it's been a while, but..." People say that a lot. It's a clarification. When about to discuss something horrible, distance becomes important. Talking about the thing itself, with all of the reality that entails, is challenging.  There is not a "light" way to discuss the death of your child. It simply doesn't work. So people employ a variety of strategies to distance themselves. "It's been a while" is perhaps my least favorite. Because it hasn't been a while.

That is not necessarily factually true. It has been over a year. October creeps up, and with it James' birthday. He would have been two. Today was his due date, fixed in my calendar last year for months. I don't look at that calendar very much anymore. He lived a third of what would have been his actual age,  a fraction that becomes increasingly lopsided as the months roll by. I wish I wouldn't keep track but I can't help myself. There are  lot of mental tics like that I wish I'd do away with.

A lot can happen in a year, indeed a lot did, but the time itself seems insubstantial. On some days I can close my eyes and I'm back at the hospital, fighting with doctors and trying desperately to do, even though never was much to do. Random memories pop into focus. James lying in bed in the PICU the night after his craniotomy. It was one of the corner rooms, an oddly shaped polygon with uneven wall lengths and an awkward, poorly planned corner. The sleeper couch was in the corner of course, farther away from James' bed than in other rooms. It drove me crazy all night because I was just far enough away that I couldn't quite make out the reading on his cranial pressure, which we needed to watch. I dragged the couch closer and spent the whole night just watching him and the number climbing and falling on the monitor. I'd been so afraid they'd take all his hair in the operation, but he still had so much. I remember how proud of him I was, how hopeful. None of that feels very far away. If anything it is alarmingly present.

So it bothers me when people tell me it's been a while. I do not like consigning James to the dustbin of memory, neatly tucked away in a filing cabinet somewhere inside my mind. I refuse the implication in its entirety. The passage of time does not make what happened less important, and it can have no impact on the way I think and feel about James. That is not to say that I expect or want to spend the rest of my life doing nothing but grieving for James- I don't, and I think James would be tremendously disappointed if I did. That said, this is not one of those things that eventually just becomes something that happened once upon a time, like graduating from high school or college. This is something that is forever happening, because James is forever gone. It is an ongoing event, because I will always be James' father and I will always love him, not a while ago, but each and every day.

Thank you for your continued thoughts and prayers.

Tuesday, August 28, 2012


I should not have asked the question, but I did. All of our modern technology has put the answers at our fingertips, and I am sometimes unable to resist the temptation. It is not healthy. I am holding my phone in palm, sheathed in the plastic comfort of LifeLock. It's an iPhone cover that is meant to be waterproof, and it largely is. It makes for a neat party trick, dunking the phone into  glass of water, the horrified and reflexively wincing faces of the guests all turned towards you in sympathetic shock. Of course, this is not why I have the LifeLock. The intuitive appeal to me, despite the cloud, was that it preserves the photos of James (now backed up into multiple formarts and independently maintained locations) so that I may never lose them. But that's not what I'm worried about now. Despite my paranoia I now have a new phone, after a year the previous one died and the cloud saved James, just as I'd hoped. He is here now too, as though he never left, his face fixed in an ever curious and joyful smile on my background. The technicians at the store remarked that I had a beautiful son when they loaded the backup. I did not correct them.

The new phone has Siri, and I've just asked her a question even though I know the answer. "Siri, how many days are between October 29, 2010 and July 16, 2011?" Siri's reply is prompt and wolfram apha branded. "260." "Siri, how many days between July 16, 2011 and today?" "407." There are some questions I should know better than to ask.

The disparity is surprising, even now. It seems like a lopsided and uniquely unfair bit of math. Yet it has passed so quickly. I am reminded of visiting the beach, tossing a bottle in the water and watching it intently for a while. Inevitably you are distracted, friends make conversation, drinks are refilled, sand castles built. When you look up it seems as though no time at all has passed, but the tide has inexorably drawn the drifting bottle farther and farther away from view. It is surprising, and you are struck by the fact that it did so much while it seems you did so very little. I often feel this way about James. It seems like such a short while ago we were laughing and playing together, crawling from the living room to the kitchen. But when I turn to look again I realize that it was longer ago that I thought, that the days have gone faster and without as much deference to my preference as I had hoped. I am reminded yet again of what sometimes seems a great injustice, that James should have so little time with us. I am not as angry as I was. Each of those 260 days was an enormous blessing. There is nothing in my life that I would trade for being James' father. But I sometimes worry that like the bottle he is drifting away from me, slowly floating far enough out that I can not reach him. The steady rhythm of time bears him farther and farther out.

On one hand, this is not all a bad thing. I'm not watching all the time anymore. He's always there, but I'm less obsessive than I was. That's good. On the other, I feel like as he goes away I am losing still more of him, silly as that seems. I miss him of course, all the time. The tears are still there, on demand. I never feel as though I'm losing him. I just worry sometimes I'm losing sight.

Thank you all for your continued thoughts and prayers.

Saturday, August 11, 2012


This is a prototypical smiling James photo. Eyes wide, mouth agape. His arms are likely flailing.

James excelled at smiling. When I think of him, he is almost always smiling. I am grateful for that. There were many different types of smiles. You- or at least I- never really expect babies to be as engaging as they are, to come with personalities. Before James was born I wondered what exactly I was going to do with a tiny person who could neither talk nor move. I grew up in a relatively baby free environment, no cousins, no significantly younger siblings. I never baby sat or spent a significant amount of time with babies prior to James' birth.

What I remember being most surprised at was how easy it was, and how surprisingly communicative James was in his own, non-verbal way. James never cried much or vocalized much beyond excited yelps of delight or mild fusses of displeasure, so I mostly gauged how well I was doing by how much James was smiling. And James smiled all the time. He was one of the happiest, most engaging babies I've ever known (assume a huge amount of bias). Throw him in the air, he smiles. Put him on a swing, he smiles, toss him a toy, he smiles. Once he started to laugh he'd often accompany the smiles with laughter, ranging from shrieks to a steady, hilarious chuckle. One of my favorite videos of him ever is one Kara took of him laughing at the dogs fighting. He's sitting at his playstation (or whatever you call those) and steadily laughing, his whole body heaving with it.

 Even after he got sick, I remember one of the first things that let us know that he was feeling better was when he started playing and laughing again almost immediately after his first procedure (his EVD). James was a little boy who could not stop laughing and smiling even after doctors put him under general anesthesia and literally placed a drain inside his head. If anything the new wires gave him something new and fun to play with (much to his nurse's distress). I am so proud of him.

As more time passes between the when James left and now, the overwhelming impression of James must be of a smiling, happy little boy. I take great solace in the fact that whatever else happened to James, I have more memories of him smiling than anything else. Sometimes, when grief crowds in and threatens to blot out the everyday joys of being here, I think of James' smile. I remember what a delight he was to be around. And the horrible things feel much smaller. I have James to thank for that.

Thank you for your continued thoughts and prayers.

Wednesday, July 25, 2012


The day he died, I wrote that I was not ok. That was true then.  I looked at the post again today.  I said that I didn’t even know what ok looked like anymore. And I think that’s exactly it.  In this brave new world of dead children and broken lives, I do not know what it means to be ok in the same way.  I’m still not quite sure what a new, post-James emotional neutral looks like.  There was a time when I could wake up with some regularity and predict the contents of the day.  James’ death removed the axis point around which that settled world revolved.  The re-shuffling of the moving parts without their center of gravity has proved a sloppy affair, beset by a tendency to take two steps forward and three back, compounded by the fact that I’m not always even sure which direction is forward and which is back. 
Perhaps that’s why I hate when people ask me that question.  Usually I brush it off; it’s a rote question, the kind that you ask with no real expectation of meaningful dialogue in return.  I should know, I’ve been guilty of doing the exact same thing.  In fact, that’s probably why it bothers me more than “How are you doing” or something similar.  “Are you ok” is my own preferred platitude turned back on me.  The trouble is when people ask me it irks me- I want to ask them how they’re defining ok.  Does ok mean that I woke up, showered, and was productive today?  Because if so, yes, I’m ok.  Provided you refrain from putting up pictures of him and talking about how he got sick and died, I am unlikely to burst into tears during the middle of our conversation.  Does it mean that I am capable of laughing, making jokes, and even having fun?  Then yes, I’m ok.  That does happen, and I’m glad for it.  Does ok mean that I am now untroubled by the fact that my infant son died of brain cancer? Because I am definitely not ok about that.  I am whatever you would describe as the opposite of ok about that.  I do not expect to become “ok” about that. 
A few months after he died, a friend I hadn’t seen in a while asked me that question.  For whatever reason (probably because I knew I could) I went off on him.  I broke out the usual sarcastic barbs.  “No, I’m definitely not ok. Remember how my son died? That was pretty not ok. But if you look past that? Yeah, I’m doing pretty awesome.”  His attempts to apologize just encouraged me.  “You know what? Don’t be sorry. I’m so glad you asked. I was really looking forward to an opportunity to talk about the defining tragedy of my life with you in advance of tonight’s showing of Moneyball. Can we get some drinks first though? I don’t want to miss the previews.”  In reality of course, he was just trying, and happened to catch me at a bad time when I’d heard the question many more times—and much less sincerely—than I needed to.  I apologized later.  Far more troubling was that I didn’t actually know the answer to his question, or any time someone asked.
And that’s the strange thing.  Because I still don’t know what “Ok” looks like anymore.  I know what it used to look like, the sort of bland neutral that it represented nothing in particular, but I do not know what that means for me now.  I am not the person I was before James died.  I’m working out what ok means, because any definition must include what happened.  It’s impossible to bury it in some kind of neutral way.  In some ways, that has been the most difficult part about losing him, co-existing with the fact of his death and resisting the urge to drown in it.  Recognizing that it’s always there, that ok is never going to mean that everything is fine because James is not fine, is a challenge.  Whoever I am now cannot escape what happened.  I can and do live with it, but I’m not going to suddenly be fine with everything that happened.
Of course, this doesn’t mean that I’m better about what happened than I was a year ago. I am much better now.  I find it easier to think of all of the good times with James, and there are so many wonderful things to remember about him. He was a very special boy that I was and am honored to call my son.  We were blessed to have him. So I’m doing better.  But I’m still working on what it means to be ok. I like to think I’m at least headed in the right direction.
Thank all of you for your continued thoughts and prayers.

Monday, July 16, 2012


This is a picture of James as he was the day before he died and on the morning he died. Peaceful, sleeping, and surrounded on either side by someone who loved him. He's adorable. He always was. 

One year ago today, we said goodbye to James. When I think of it, even now, the memories are crisp and perfect. Too perfect. How could it have been a year ago? I remember a thousand tiny, horrible details I'd love to forget that rattle around in my mind, accusatory. I have read of other people who forget the details of the day, whose minds shelter them in some sort of protective haze and render the horrible moments less clear. I am envious. When I think of today, those details are the kind that come to mind first. But they shouldn't be. They represent a fraction of James' life and not even the most important parts. He must have laughed for at least a full day, for instance. Smiled for longer.

I cannot believe an entire year has passed. It seems so much quicker. It seems like he was just here yesterday. The last day seems most vivid sometimes, but that's a phantom, a trick of the mind. The last day is just a milestone, even as the details that run through my mind are punctuation marks to the end and much less significant than the end itself.  Today, I will try to remember all of him. The laugh, the smile, the spiky hair. Today I will remember my son, whom I will always love. I cannot think of any better way to spend today. 

Thank you all for your continued thoughts and prayers and your support over the past year. 

Thursday, July 12, 2012


I rarely venture into his room. It remains just as he left it, transfixed in a state of perpetual infanthood. Toys litter the corners, gathered up haphazardly and scattered without reason. His changing table set up and waiting, a stack of diapers waiting unopened by the cushion. After he died, I spent a night or two on his rug, T-Shirt knit and surprisingly comfortable. I thought the sensation of being there might have some kind of independent value, might keep me closer to the memories. I suppose I could have used the bed- his crib is a bed, purchased with the express purpose of expanding one day to a full size and accompanying him through childhood and into adolescence, but I could not bear to do that. In any event it would make for a macabre guest bed.

His room has existed in stasis now for longer than he occupied it. Everywhere, there are reminders of what should have been. His closets and drawers stuffed to the gills with 12 month and up clothes purchased on sale and off season from the year before. On the ottoman accompanying his rocker, the one I sat on while Kara and I alternated holding him as he lay dying, rests a coordinated 12 month outfit, "Here Comes Trouble" written in playful letters across the front. If only that were true. The tags are still on it. It was marked down to under ten dollars. A bargain, though a pointless one. On top of his chest of drawers, the plaster moldings of his hands and feet. One was done at the hospital and one at the home, I cannot recall which. I still cannot figure out how to take the impressions out of one of the molds, and so they sit, as I am too afraid to try and break them.

I can never make a decision about what to do about any of it. To make one decision, say, to give away the unopened toys or the brand new clothes, leads inexorably down the path to making hundreds. What do I do with this room where my son once lived and died? What do I do with his books? Which do I keep? How do I choose? The same is true of all the toys, of everything in the room. And so I make no decisions. To acknowledge how inessential each piece is  represents some kind of ultimate surrender for which I am unprepared. It means acknowledging the obvious- that James has no use for them, or for any of the artificacts he left behind, each preserved only for us.

I went yesterday. I sat in his chair, and for some reason turned to look out the window, away from all things James. In the antique crib between the chair the window sat a load of toys, overflowing the crib. On top was his plush dog toy. The zombie dog, which always went off with one of its phrases at the most random time. I hated that toy. We bought it at Target with a gift card. I have no idea why I remember that. Amused, I go to press one of the buttons, to see if it's still obnoxious. There's no noise. I try again, and belatedly realize the batteries are dead. It's been sitting unused for a year. Of course they're dead. The realization starts a minor panic in me, an unwillingness to believe it's been that long, that the toys and the rest of the items kept so carefully in stasis are beginning to fail. I immediately check the rest of his electronic toys. His firetruck still works. His piano rings loud and clear. The mobile won't work on the first try but it comes around on the second. I can't find his laptop and for a moment wonder if I buried him with it, but it's buried beneath some other plush toys and obnoxious as ever. One of the pieces of his activity mat no longer works. It's the last toy I check and for some reason I lose it, clutching the silly dog to my chest and sobbing.

Sometimes I am better at this than others. Sometimes I am more ok, and the emptiness seems like an appendage, a burden but not an unbearable one. Other times, like then, it is the only thought I can hold in my head. The rest  of my thoughts grow small and do not have the narrative force to dislodge it. For some reason realizing that the batteries on his toys- even toys he didn't really like- are failing brings home to me just how empty the room is, how pointless. That is a hard thing to know. Afterwards, I sit there for a while, taking it all in.

The more time passes the more transparent my defense mechanisms become. I am doing better, but lately everything seems fresher. Whether it the concurrence of dates or seasons, the memories seem clearer and closer. The dead batteries are just another reminder of how long its been, and what is missing. I can't imagine if he were here I'd ever have allowed that to happen. But he's not, so I did. This month is hard, and it's realizations like that that drive it home. I miss him, and sometimes all the more when I realize how long I've missed him. Still, I tell myself that next month will be better, and next year will be better. I'll get around to the room eventually. The batteries might give out, but that doesn't mean James is or ever will.

Thank all of you for your continued thoughts and prayers.

Thursday, July 5, 2012

Independence Day

This is James from the day after the Fourth last year. I'd post one from the Fourth itself but I've posted all of those, and I hate to do repeats if I can help it.

James was sick on July 4th. He'd been sick the day before, throwing up despite a steady stream of zofran. Oral never worked, he just threw it up. Emesis, the doctors called it. Very clinical, much cleaner than the reality of baby vomit streaked with red highlights from baby tylenol (or was it the steroids?) covering every article of clothing on your person. The day started at home. We dressed James for the parade in a red white and blue madras outfit in which he looked completely adorable. I remember being excited the night before to finally do something normal with him again, to get him out of the hospital and into something approaching a routine. It all seems so silly in retrospect. Instead, James returned to the hospital less than a day after he left it, and the only fireworks he saw were those spied in the corner of his hospital room window. The next time we left the hospital would be our last.

I went back and looked over my posts from that day last year. It surprised me what I remembered and what I forgot. I remembered the parade, the vomit, and the frustration at going back. I remembered the almost routine intake procedure at the ER, which for children with cancer serves at best as a staging area for fluids on the way to the floor. I did not put it in the blog, and I cannot remember when it happened, but one of the nurses there had trouble accessing his port. They wanted to do an IV, and we refused on principle. You do not have a surgery to provide intravenous access and then put in IV. It bothers me that I cannot remember which visit that happened on, though I can remember the nurse's face and the exact needle gauge James' tiny port required.

The things I forgot were mainly medical. The exhaustive effort to find a neurosurgery doctor to visit James on the holiday. The late night call we received from the neurosurgery resident to placate us enough to get to the next day. He was in the middle of a trauma-it was the Fourth of July after all. I remember James' eyes fluttering and complaining about it, a prelude to his seizures. I remember the particular nurse I describe but cannot for the life of me remember her name. Blond. Pony-tailed. Whitney? I think it may have been Whitney.

I wonder if I'd have remembered the medical details more if he'd lived. If he'd lived, there might have been some point to remember the particulars of his care or of my various frustrations with his doctors. It might have become relevant. If there had ever really been a chance for him to live, that also might have been something worth remembering. There was not, and so the memories become inconsequential, chaff separating the reality of his diagnosis from the inevitably of his death. The memories that rise to the surface are those more firmly rooted in him, what he wore. What I wore. I'm wearing the shirt tomorrow. The feel of him lying on my chest in the ER bed, my hand resting on his back. I very badly miss holding him.

The other thing that surprised me about the posts was how soon they were after he was diagnosed. July 4th was Day 12. We only had 24 days with him after he got sick, less than a month. In my memory it seems like a much greater gap, an elongated period that occupies far more time in my mind than it ever could have in reality. Of course, I spend more time there than I do any other 24 days day period in my life, so I suppose that makes sense. The details may fade with time, but the sensation remains fresh.

In an odd way, the priority of the memories that remain convinces me of how right the decisions I made were. I struggle with that of course, guilt has a funny way of occupying the empty space grief creates, but I remember James and being with him more than anything else. And of course that was always the most important thing. The rest could never amount to more than details.

Thank all of you for your continued thoughts and prayers.

Wednesday, June 27, 2012


I don't care who you are. It's impossible not to find this picture adorable.

Just do it.  These are the words that come to mind as I stand in the driveway of the car dealership, a technician’s hand buried in my trunk, straddling discarded individual soap containers that litter the floor.  It looks like someone went hotel to hotel and raided every bathroom, then threw it all in my trunk too fast to make a proper getaway.  The technician commented only briefly “Back from vacation?” He asks.  I do not reply. 
I am here because I drive too fast.  It’s one of the last holdovers from my youth when I ruined a succession of GMC products by driving all of them with a lead foot right into the ground, or in some cases the most conveniently located curb.  My current car’s safety features include rollbars that pop up from the trunk whenever you hit a bump too hard, which I often do.  The emergency lights pop on and the car swears it’s been totaled.  It’s quite the production.  There’s a way to reset it, a spot with an allen wrench nestled in the trunk.  I almost always forget it, and it takes the dealer five minutes.  But it means he has to open the trunk.  While I keep my car reasonably neat, the trunk is another matter.  It is filled with the detritus of every car I’ve ever owned, ported haphazardly from car to car to car at each switch as I am always too lazy to just clean the old one out.  Jumper cables.  College transcripts.  CDs I burned in high school that almost certainly will not play now.  Some certificate I received the day I was sworn into the bar.  I should do something with that.  Since James died, the soap. 
It did not come individually packaged.  People handed it to me in bags, the remnants of which I see clearly in the car.  Mementos of their own vacations no doubt.  I mentioned it on the blog I think, the value of those little hotel sized portions of soap the hospital workers (Social services? Guest services? I can’t remember.) handed out to us when we stayed in the hospital.  Generally you do not plan for a multi-week hospital stays.  Then again, perhaps you do.  Perhaps people schedule their procedures and have a reasonable anticipation that they will live to have them performed, and come prepared accordingly.  I did not plan.  The first time was in the PICU.  There are no individual bathrooms in each room in the PICU, only a community bathroom with a shower located outside the restricted confines of the ward itself, on the other side of the buzzer.  You wear sandals, like people always did in the community showers at my dorm in college.  It just seems like good advice in a communal bathing space.  They give you soap when they come around, pausing just long enough to talk and look after you.  You never realize how dirty you are until the water hits you.  It’s funny because you can’t imagine why you’ve been sweating so much, when you’ve hardly moved and been fighting off the cold most of the day.  The last shower is a distant memory of course, and perhaps that explains it.  On the floor each room had its own shower and bath, presumably for the patients, though James was never big enough to be bathed in anything other than the sink, so everyone else used it.  It’s a shame.  He loved to splash.  I gave him his first bath in the hospital after he was born.  He was beautiful, and I remember thinking to myself, as I did so often then, that this was only the first of a lifetime for him, the beginning of a routine. 
I know I would not have remembered I needed soap unless one of them gave it to me.  Did I ask? I can’t remember now.  I probably wrote about it if I did.  I should look.  I almost certainly will not.  Each lasted a few days.  Eventually soap came up from home, and that helped.  But the travel sized bags provided an important bridge. 
After he died, people brought the bags.  I appreciated the gesture.  They asked if I could take them up to Children’s.  A reasonable request, I knew where to go and who to see.  They did not.  I knew where to park and the fastest way to get there during rush hour.  How could they?  They could also not know how terrified I felt about it, terrified of walking over the sky bridge and over the garden where he had his last photo shoot, of how paralyzing the fear that quivered in me at the thought of it was.  But these are the kinds of things one does not mention in polite conversation.  “Thank you for giving me this.  I’d love to bring it up to the hospital, but I’m afraid I might start crying uncontrollably at the front desk.  Would you mind doing it yourself? Thanks.”  So the bags, inevitably spilt or broken, accumulated in the trunk, and the soap slowly formed a layer of stuff amidst all the other debris, obscuring the floor.  I ignored them studiously, piling groceries and suitcases on top of them and trying to deny the reality that eventually they would need to go somewhere else.
And that’s where they are when the technician pops open the trunk to repair my latest speed bump.  He comments.  I ignore, but I start to think to myself.  Just do it.  Just take them.  I’m less than five miles—if that—from the hospital here.  I can do this.  It’s an impulse, but I’m not fighting it.  I stop at the Starbucks on the way—the closest Starbucks to the hospital that is not in the hospital—and continue on my way.  Keep it together, it’s just a hospital, I tell myself.  I park in the garage on autopilot.  Did the rate change?  The ticket is the same.  I used to have a weekly pass, so the dailies stacked up in the car.  After he died I must have thrown out a dozen.  I park high, but close to the bridge, which the only part that matters.  Digging around the trunk I rescue the soap and some of the bags. 
Down the elevator.  Stop on 2, never 1.  I recognize the faces on the skybridge.  Not the people, but the faces.  Some are relieved.  Emergency room visits.  Some, though, have the haggard look of a person who intends to be here a while.  There’s more focus.  And the kids are never walking with them.  I must look different than last time I came here.  I suppose I am different.  I don’t start shaking until I walk into the lobby.  I am regretting the grande latte, which I’m clutching in the opposite hand of the soap bags.  There are the greeters.  The best cafeteria is below us, the stairs are near.  Valet desk on the right, couches on the left.  The greeters are volunteers, they hand you badges with the floor you’re headed to.  I used to almost have them all, but I never needed to stop because I always already had one on.  Today I do. 
There are two greeter volunteers, an elderly man and a high school girl.  I choose the man.  I start talking before he can warm up to ask me where I need to go (as if I would need directions) “I have some soap, for social services (I decided to go with that. Guest services just didn’t seem right.)  He looks perplexed.  “Soap?”  “Yes. My son stayed here for a while last year.  They gave us soap; I’m trying to give some back.”  I wonder if the tremor in my voice is noticeable or not.  How can he not see gift shop in the corner? I want to ask him if they have the giant giraffe in.  James had one at his party.  But he would not know that, or that it was in the room when he died.  He seems more understanding now that I mentioned the son, though I did not mention if he was alive or dead.  That was intentional.  “Oh, yes, I’ll get someon—“  I cut him off.  I’m feeling less certain now, the impulse is fading.  We took James home through the doors on the right in his Moses basket.  No car seat.  “No, it’s fine.  I don’t need to wait.  I trust you.  It’s from the Sikes family.”  He nods and I think is preparing to offer a thanks but I’m already walking away. 
I make it to the car before the first tears.  I’m glad I made it over the skybridge again.  The people with the long faces have their own problems.  I sit there for a while.  In a strange way I miss being here before.  I miss the hope associated with that.  I keep the door open to ward off the heat and I lose myself for a while.  I have a good spot, and I notice someone waiting for me to leave, so I do.  Better they take the spot and use it. 
It’s done.  I’m glad.  The soap will mean more to them than my trunk.  It’s the right thing, and really, the only thing to do.  I feel better having done it, one more thing that is not that important but that feels good.  Most of the little things do. 
Thank you all for your continued thoughts and prayers.

Sunday, June 24, 2012

Day Three Hundred Sixty Five

One year ago we began. I suppose we never really ended, chasing the tumor through surgery, the terrible promise of chemo, and finally home again. James found his own way around the tumor there. The journey changed. The path became less clear and more muddled. It's strange in a way. James dying settled a lot of things. Side effects of chemo, what the next year of treatment would be like. It took away all of the unsolved variables of that equation and replaced them with an absolute certainty. The trouble is dealing with that, with knowing it and living in it, walking around each day with that settled on your soul. The adjustment is not pleasant.

If you told me one year ago today, sitting at James' bedside with the white noise of our neurosurgeon in the background and a picture of James' tumor splashed on the wall that I would spend the day a year later without my son (unless you count his grave, and you really can't), I would have hit you. I would have called you a liar shortly thereafter, and after you left me alone I would have started to cry because I would have been frightened you were right, and fully aware I was incapable of dealing with what that meant. Today, I'm still not sure but I am here.

In many ways, I'm not sure what I expected. Some revelation, perhaps, as if the date itself held some special significance to the world outside of me. None of that happened of course. It's a day. A day when the thoughts are closer to the surface, when my memory of him is more easily accessible and I can hear his voice a little clearer. But it's still just a day. I cried, but not as much as I might have. There is no clarity, at least not anything new. Because it's the kind of thing I do, I looked up most of the key dates on wikipedia to see what if anything happened on them. June 23 is particularly unmemorable. A few minor battles in minor wars, the birth of a lesser King of England, Julius Caesar's illegitimate son with Cleopatra, and a hundred other individuals just important enough to merit a place on wikipedia but not in your memory. It's just another day, and not an especially crucial one.

Not much happened. The day passed on a slow, steady manner. Denton. Lunch at Rudy's, a bar-b-que chain restaurant that has the distinct advantage of being at the same exit as the cemetery. Home and netflix to pad out the afternoon. Dinner. Bed early. Just another day.

I know better to expect revelations. I know better than to expect anything at all on a schedule. It's been a year and there will be more years to come. More days.  I miss him either way. I love him more. I always will, and while I can't count on revelations I can count on that.

Thank you all for your continued thoughts and prayers.

Tuesday, June 19, 2012


Pain is the wrong word.  It is grossly inadequate and also simply incorrect.  Pain glosses over the unique and special ways that exist to hurt, it neglects the finely tuned nuances of each individual experience.  Because the great loss, James’ death, masks a thousand smaller horrors.  Sick James. Not dying sick, just sick.  A year ago, we wasted a weekend in an emergency room combating a phantom summer bug.  The bewilderment that accompanied his diagnosis.  The helplessness of watching him suffer a seizure, his little body writhing with a team of doctors around him, me standing uselessly in the corner.  The debilitating thud of his initial diagnosis, the tumor so obvious on the MRI I could have sworn it was mocking me.  The last days we spent together, that certain sorrowful calm that seemed to settle in. 
The events paint too neat of a picture of course, the things that happened, while horrible, do not form the entire picture.  There are frustrated dreams and ambitions as well.  Silly things, really.  The dashed hopes of watching him play any sport.  The unfulfilled “I wonder” questions.  I wonder what James’ voice sounded like.  I wonder what his first word would have been.  I wonder when he would have walked, and how fast.  I wonder what color his hair would have ended up.  I wonder if he would have liked to swim.  I wonder what he would have looked like in pre-school/school/junior high/high school/college/work/on his wedding day/at any age over eight months and seventeen days.  
Each hurts in its own way and inhabits its own special little void.  Negative space where something whole should be.  Pain implies something too positive, too overt.  It suggests that you are being acted upon.  Grief defines itself by absence and an overwhelming sense of want.  It is the lack of any action that defines it.  There is a hollow quality to it.  One of the things people tell you when you have a child is that when you become a parent, a piece of your heart exists outside your body.  I never liked that.  I found it trite, one of those things people always go on and on about for the sake of saying something meaningful without saying anything.  But there’s some measure of truth to it.  
I am not the man I was before James died.  I am not that man because I am missing a part of me—the man I was will not be returning.  I am not going to wake up one day and suddenly be ok.  I will always miss James, I will always love James.  This is perhaps why pain is such a particularly wrong word.  I do not expect to spend the rest of my life in the state I was the first few months after James died.  I also do not expect to ever return to “normal.”  I expect to always miss him.  But I do not expect that to define me, nor do I expect that “pain” will be the lasting legacy of what James meant.  This month and the next will be challenging.  It’s not the “pain” though, and it’s none of those things I wrote above.  The main thing is that he’s just not here, and I really wish he was.  I always do.
Thank you for your continued thoughts and prayers.

Tuesday, June 12, 2012


Summer arrives.  Around James’ grave the grass slowly dries up, sustained more and more by the sprinklers, the wildflowers of spring withering in the heat save for a few resilient Indian Paintbrushes clinging to the shade.  This is how I remember it in my first memories of it.  The days and weeks after his death when I first came so often I developed a personal relationship with the gravediggers.  I suppose they must prefer caretakers, but I never asked.  Last time I went, my cell phone played the overheating game again, just like last summer.  I forgot to bring water and sweated through my shirt, pausing at some point in my reverie to walk over to the hose the cemetery keeps on the edges of each “garden” for a drink.  I believe the idea is that you can water the grave yourself if you so choose.  I never do, at least in part because the lusher the grass is the more it bothers me.  I turn the faucet and wait patiently for the warm water to pour out of the spout, the cool water requiring a few moments to overcome the accumulated warmth of the plastic.  I take a few long drags and for just a moment feel like I am young again, taking a long drink at the end of a summer’s day before turning the hose on myself to wash away the filth, a necessary exercise before my mother would let me into the house.  But there’s no nostalgia in cemeteries, and it quickly fades. 
Lately, I find myself willing the days to pass more slowly.  We are coming full circle, a calendar year since our great adventure began.  One year ago today, James almost certainly had cancer.  The tumor that took his life was no doubt already visible on an MRI, rapidly gaining strength.  But no one knew it.  He was throwing balls, crawling and eager for you to hold his hands to walk him across the floor.  He was happy, as he always was.  Two days later, he started throwing up.  Nine days after that, we found out about the tumor.  Twenty four days later, he died.  A little less than a month, and with it the summer.  People keep talking about how hot last summer was, fifty days over one hundred degrees.  Brutally hot, a record in every book.  I have no memory of that.  My memories of last summer are all cold and sterile, the artificial chill of the hospital everywhere.  Warm blankets pulled from the warmer on the ICU floor, a welcome respite.  I took so many they eventually ran out and I memorized when the orderlies came around to bring more.  They never stayed warm long enough and I always ended up cold, the chill in the air compounded by the cold vinyl couches that doubled as beds never quite retaining my body heat.  The few times I walked outside the hospital I remember how refreshing the heat was, the goosebumps it raised on my arms.  I achieved a spectacular level of paleness, an unhealthy pallor complete out of sync with the season. 
That time is coming around again.  Father’s day is right around the corner.  Last year, James, considerate boy that he was, “bought” me a suit for father’s day.  I think he may have even selected the pattern or perhaps thrown something in its general direction.  I wore it to his funeral a few weeks later.  This year it’s a holiday I could probably do without.  The heat is returning too, but this year it appears I may actually notice.  I have more time to notice. 
The pace of things quickens in the summer, vacations beckoning and promises of summer fun on the horizon.  I keep willing time to slow down, but just as last year when the world insisted on moving on despite James, it appears it will do the same this year.  Each date forms some kind of strange memorial in my mind.  June 14, the day he started getting sick.  June 16, 11 months from his death.  June 23, Day Three Hundred Sixty Five from the old count on this blog, the day we knew.  July 16, the last day for so many things.  Each reminds me in an irrevocable way that James is gone, and he has been gone so long that an entire year has come and gone.  He has been gone longer than he was here.  I wish I remembered other milestones with such precision.  The first day he smiled, the first day he laughed, the first time he rolled over or crawled.  But I do not.  I assumed those would simply be small firsts among many, previews to impressive achievements like walking and talking.  The negative dates never represented a different kind of beginning though, and perhaps I remember them better for that.  You can’t choose memories after all. 
I do not always remember him sadly.  Often, I enjoy thinking about him.  James was a source of tremendous joy.  I was honored and blessed to be his father for all the time we had together.  Of everything I have ever done, I am most proud of James.  The summer is hard because for so many of these dates, the joy is tough to identify.  Some days in the hospital, James did amazing things that I look back on and am incredibly thankful for.  He was so wonderfully resilient.  These days are not those days.  Some days, all I can do is miss him.  Perhaps some days that is enough.
Thank all of you for your continued thoughts and prayers.

Tuesday, June 5, 2012


 I've had many scars.  Ten stitches on my forehead from the bed post in my parents’ room.  They told me not to jump on the bed, which naturally encouraged me to do precisely that.  As it turns out, there’s a reason your parents tell you these things.  Another on the opposite side of my forehead from a bike crash.  I tried to run down a boy who I thought said something about me and I got the worst end of the collision, which seems fair as I hit him.  Thirteen stitches across my knee from the similarly poorly considered decision to rest my knee against a window in bed in high school.  As it turns out, windows are not especially sturdy.  Skin graph scars tucked away in corners of my body, collected to transplant to my ear and my inner ear, to correct inborn flaws.  A long but quite neat tear by my rib, the product of cartilage removed to form my ear.  When I awoke from that surgery I simply moaned as I did not have the strength to scream.  When my mother heard the noise, she asked what it was.  When they told her she fainted, crumpled in the hallway outside my ICU room.  I used to write about that surgery every year for whatever essay writing assignment teachers would hand out.  Some teachers cried.  Either way, it became a defining tragedy, an easy crutch to explain what an awful child I was.  I took advantage of it, which I regret. 
Most of these scars faded almost completely as the years went by.  The scars along my forehead thinned to a pale grey from an angry pink eventually fading entirely into wrinkles.  New skin grew in to fill the holes from the skin graphs, eventually almost indistinguishable from the skin that never left.  Even the scar on my rib narrowed and diminished as I grew; evolving into another wrinkle at best.  With them went much of the pain and anger that accompanied them, retreating into hindsight and indifference.  It’s difficult to stay focused on any one thing long enough for it to matter.  Life moves on.  New tragedies eclipse the old, joy overwhelms sadness.  I’m reasonably certain those are lyrics from the “Circle of Life” but there’s some truth to it.  
I tend to get annoyed when people talk about “healing emotional scars and wounds.”  It seems like one of those insidious and oversimplified slogans and analogies that people throw around because they want to avoid using words like death, dying, or deceased.  All the morbid ds require euphemism in common speech.  When one relative of mine was dying I remember the hospice where they were at gave out these brochures.  The brochure had a picture of a boat sailing into the moon on it and described the various phases of death as a voyage from the shores of life into the ocean of death or some similar nonsense.  I remember thinking to myself that these people could not actually be this silly.  No one’s going on a cruise here or some great exploratory expedition.  The undiscovered county line in Shakespeare is a metaphor about suicide, not discovery. 
Perhaps as a result, I do not like people to talk about my experiencing some kind of healing.  I think that misses the point.  James is not a scar or a wound.  He was my son.  What happened to him is most horrible because it happened to him, and he was a wonderful little boy who did not deserve even a fraction of what he went through.  What happened to me and the rest of his family is a secondary tragedy, a footnote.  To describe James as something that happened devalues the fact that he was someone who was.  His absence marks us.  Scar suggests too much negativity, and I liked James too much to call him a scar. 
To the extent James represents a collateral wound to us; the question becomes how obvious that wound is.  In this way I suppose there is some resemblance to a scar.  Like all the wounds, I suppose James has become less visible overtime. I smile, laugh and joke.  I work.  I go through my day and I seriously doubt most people who met me would know that I lost my son eleven months ago.  The wound remains, but it becomes less visible.  Right after James died I could bare say his name.  Unlike all the other scars I described above, this one only fades visibly.  The pain lingers, trapped somewhere deeper.  I do not intend for this particular wound to heal completely. It is important to remember. I do hope that it continues to become less raw to the touch.
Thank all of you for your continued thoughts and prayers.

Friday, May 25, 2012


J nb6
This picture isn't the one I'm talking about in this. It's just one I like.

I wake up early now.  I never used to.  In college, my roommate worked as a radio morning show DJ and woke up around four or five.  We used to joke that his day began when mine ended.  I scheduled classes late and spent more time without the sun than with it.  That changed by necessity in law school, and as I age the hour seems to keep creeping up on me.  I rise earlier and earlier, a habit my body now stubbornly clings to even on the weekends.

Morning is always the hardest time.  James is clearest to me in the morning.  Literally and emotionally, it’s the easiest time to find him. As the day goes on I get more easily distracted.  E-mails, texts, phone calls.  Anything you want to do and many things you do not want to do.  I have tinnitus, and my ears ring loudest in the morning, fading as the day goes on as the ambient noise provides a distraction.  James fades in the clutter of the day.  He’s always there of course, just in the background.  I think about him every hour.  But he is clearest in the morning.  The focus is sharpest and almost complete. 

As I go through my morning routine, with nothing to do but brush my teeth and stare at myself in the mirror, I catch myself thinking of him.  Lately, I think about him growing up.  I think about Saturday mornings and cartoons, of toy bats and what it might have been like to have a kid rather than a baby.  I wonder how he would have disrupted my mornings, breaking the silence of me standing in front of a mirror and brushing my teeth.  I’ve started turning on the shower before I brush my teeth, and if I’m honest it’s at least in part to break the quiet so I spend less time dreaming up scenarios like that.  The morning is the hardest time to distract myself.

Because I wake up early, I tend to go to work early as well.  Again, I prefer to be doing.  I am most productive in the mornings, again, because there are no distractions to keep me from doing the things I need to do.  Early this week, in a fit of early morning productivity I elected to clean out my desk.  I had not done so in over two years.  Two seasons worth of Christmas cards, two years worth of napkins I kept from to-go lunches because “that will probably come in handy” which did not come in handy.  Farther down, no doubt deliberately placed there, a whole series of condolence cards.  I’m not sure I’d read them before.  I do now.  They’re touching and heartfelt.  I wish I’d responded. 

Beneath those I discover something I do remember doing.  A whole set of James’ newborn pictures.  When he was born I asked the facilities guy at my office to install a bulletin board beside my desk.  I put all my James related memorabilia up on it.  His pictures, the Valentine’s Day card he made me.  The idea was that the board would continue to grow with James and keep him close during the day.  The pictures, all but three, came down the day I came back to work.  I just couldn’t deal with all of them.  I left the card.  The pictures went back into the sleeve and joined the heap at the bottom of my drawer. 

I take each one out of the sleeve individually, pausing for a moment.  Some have tape from where I attached them to the board or holes where I pinned them.  I’d never be so careless with pictures of James now.  It takes me until the fourth to start crying.  It’s easier to cry in the morning.  He’s wearing a knit hat, his hair peeking out from beneath the cap.  I remember the photographer who took them not being quite sure what do with all of his hair.  He’s swaddled and looking to the side, a dimple on his cheek.  His eyes look bluer than I remember.  “Who is Daddy’s best friend?” I ask the picture.  I used to ask James that all the time.  He’d laugh and laugh, especially if I made a particularly ridiculous face for him.  “Jamesie!” was always the answer. 

I spend a little while longer looking at it, long enough for the tears to dry, then I put the picture back up on the bulletin board.  I feel close to him, and the extra picture feels right.  The next day, I put up another picture.  I did the same thing everyday this week, always in the morning, until I filled up the board completely again.  It feels good to have more pictures of him.  I’m still not great with mornings and I probably never will be.  But I’m glad I least tried do something with that focus.

Thank all of you for your continued thoughts and prayers.

Sunday, May 20, 2012


After James died, I ran. I ran away from conversations, polite nods and eyes crinkled in sympathy. Sometimes when running I even faced them, mastering thank yous and polite handshakes before immediately changing the conversation subject, my aggressively ok facade offering an escape of its own. Just pretend it's not happening, I thought, and it won't. I ran as far away from these things because it seemed for a time if I ran fast enough, I could in some way manage to escape the roiling terror of the reality nipping at my heels, that in reality my son, whom I loved before all others, was gone. In his place there was nothing in a particular, a life indifferent at best. A solar system with the sun snuffed out, the planets carrying on as if nothing happened, orbiting a void.

But I got tired eventually. The hours in the day added up, and no matter how hard I tried, I could not fill all of them. The trouble with running is that you need somewhere to go, something to do. When I ran out of things to occupy my time, James inevitably filled the void. When something lingers in the back of your mind all the time, it takes very little to draw out. Four or five months after James died, I began to run out of steam. My distractions proved increasingly less effective. James started to creep out of the boxes I'd made for him in my mind, even as he did in life, popping up in unexpected places. An avocado popping out my sandwich, neatly sliced and perfect for his fingers. Television shows I used to "watch" with him returning to the airwaves, everything back from the summer but James. Holidays, over and over again. More blocked facebook feeds of kids exactly his age than I can remember.

It would be incorrect to say I stopped running. It would be more appropriate to say I collapsed, exhausted. My self-induced fog began to lift, and I saw the world clearly. I cannot say I particularly liked what I saw. The fragmented bits of my world matched up much less clearly, and with less purpose, than they had before. Having the entire context of your life shift suddenly and without warning is disorienting and not particularly pleasant. I spent a long time angry about that. I spent more time sad about it.

In the end, it settles. Not settles in the sense that it's ok, or not horrific in some way, but settles in the sense that it is not actively debilitating when it hits you. Loss of any kind, especially the loss out of order of someone you love, is not a wound that heals. Closure is an impractical and misplaced goal. James is not a torn ACL, something a surgery and a few months of rehab will set right without further ado. You live with it. Your only choice is how you choose to do that. Twenty years from now, I will still love my son and miss him very much. It is very likely that I will think about him everyday until the day I die. I can choose either for that to be the saddest part of my day or a bright spot. James never brought me anything but joy. I wouldn't trade having him, even for the short time we did, for the world.

I receive a lot of messages from people who are losing, or who have lost, their children. I cannot say I understand their pain completely. Each child, and each loss, is different. I would never presume to know their experience. People sometimes ask me what I did. So I thought I'd say. I'm not particularly proud of running. Given a chance to start over, I'd probably do a lot of things differently. Of course, no one chooses this in the first place.

Thank all of you for your continued thoughts and prayers.

Saturday, May 12, 2012

Gray for May

I'm far too late in posting this, but May is Brain Cancer awareness month. The color is gray, as in gray matter. I tend to think brain cancer is rather underreported. Of course, I'm biased. That said, cancer is the leading cause of death of children under the age of 14 and pediatric brain cancer is the leading cause of death from cancer in children. Approximately 4200 children are diagnosed with a brain tumor each year. If you have time this month, tell someone about it.

Friday, May 11, 2012


Here's a picture of James playing in his bouncy/multi-station playpen. I loved watching him play in this. It combined his two passions, slapping things and bouncing. The toy was made for much older children but James tried it out before the recommended age guidelines. He always soared well ahead of his various developmental targets, and this just seemed like another one. In retrospect, it's only fitting that he hit his milestones early, as he had so few to hit. I loved watching him play with this toy, Kara took a video of him watching the dogs fight from it. It's one one of my favorites.

A few days ago I looked up James' great-grandfather, my grandfather and James' namesake, James Edward Sikes, Sr. I tried a google search just to see what would happen, and much to my surprise, he came up on something called findagrave, which is possibly the most morbid website ever. There he is along with my grandmother, who died exactly a year before James. Kara was pregnant with James when she died, and one of the last things I said to her before she died was that I told her I was going to name my son James, after her husband. She could no longer speak, but she squeezed my hand and met my eyes for a moment, pleased. She died the next morning. I like to think they were waiting for James when he died.

Even more interestingly, along with the findagrave link helpfully letting the entire universe know where he is buried there's his obituary, fresh from 2003. I wrote it. I remember when I wrote it. Like James, he got sick all at once and died shortly thereafter. I did not arrive in time to be with him, which I regret. My brother and I were his only grandchildren. I remember welcoming my grandmother back at his house in after he died, when she and my father came home from the hospital. She buried her face in my chest and cried, saying over and over again that "He loved you so much." I never doubted that. I do not know why writing the obituary or giving the eulogy fell on me but it did, so I did. I did the same for my grandmother, and sure enough, there's her obituary as written by me, right alongside his. Interestingly, findagrave also serves as an impromptu geneaology site. I can click on my great grandfather, Arnold Larkin, the exception to the James rule, all the way back to James Franklin Sikes, my great-great-great-great grandfather. Perhaps more disturbingly, someone has taken the time to go to Sikes (as a rule, one should not visit Sikes) and actually take pictures of these people's tombstones. Somehow, the obituaries follow back all the way until James Warren Sikes, Sr., my great-great-great grandfather who died in 1925. The florid language reeks of 1925, invoking the silent call of the "death angel" to Sikes, Louisiana.

You cannot follow findagrave all the way from my grandfather to his son James Edward, Jr. to James Matthew to James Camden. I suspect that my father and I are inconveniently alive, but the process will be resolved following my death when I join James in Denton. I did not write an obituary for James. I buried him in the poplar casket we picked out a few days before, the one most like a little boy and least like a baby. I did not want to bury a baby. It seemed demeaning. He was a person. James was already playing with the big boy toys, afterall. Google reveals an obituary, a boilerplate web posting by the funeral home we hired when he died that gets my name wrong and provides dates for the service with a play lock letter background, to make clear its for a baby I suppose. I am sure they asked if we wanted to write one. I am sure we declined. I do not remember. I do not remember much about the days after he died. When I wrote my grandparent's obituaries, the trouble was always with punctuation. The appropriate way to write survived by, etc., etc. Semicolons or commas? A host of nieces and nephew. I'm sure I used that phrase. What would I say about James, survived by three Uncles, no cousins, five great-grandparents, four grandparents, and two parents? Just as well I didn't bother.

The act of the obituary celebrates. It memorializes the life of the deceased, referencing the accomplishments and the family- the survivors- of the one who has passed. In James' cases of course no such memorial exists. James died without survivors except for his ancestors. He died without cousins, siblings, or anyone of his generation. I rather think that's not the idea of an obituary, From these old ones, they give a path as to what happened, rather than what did not. Children, grandchildren, nieces, nephews. There is no movement in the opposite direction. 

Strange things like this pop up when you lose a child. The template fails you. I remember answering questions at the funeral home after he died. Education level? You actually just asked me if my eight month old son graduated high school? He did not. Yes, less than junior high. That sounds right. There's no place for it in the pantheon of grief, a fact reflected in all of the standard fare grief literature. Celebrate life, they say. How do you celebrate a life that never got off the ground? I wonder these things, and I wonder if I shouldn't have written James an actual obituary.

I wonder a lot of things.  To me, an obituary provides a bit of finality to the community, who may open up their Sunday paper and watch their acquaintances go, one by one, with all the details of life conveniently congregated in one place. With James, its more personal. Sometimes it gives me comfort to think of James with his family, my grandparents and Kara's. Other times I just feel bitter, wondering if we aren't a few obituaries or a findagrave link short. Mostly of course, I just miss him, playing and slapping the dials on his toy, fascinated by the different sides of it. You miss all of the small things. The big picture is too uncertain to dwell upon.

Thank all of you for your continued thoughts and prayers.

Monday, April 30, 2012


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.

Wednesday, April 25, 2012

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.