Surprise

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.

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.

Birthday

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.

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.

Drifting

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.

Smile

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.

Okay

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.