Wednesday, October 29, 2014

Happy Birthday No. 4

Four years ago, the world welcomed James Camden Sikes. He won many hearts. He died too young, and he left a lifetime behind him, unfulfilled. Alive, James would now be four years old, a living breathing child rather than a projection in the minds of his family, a hazy best guess more closely resembling the "maybe" sketch on the backs of milk cartons than a child. That is a tragedy for which I continue to have no answers.

Over the years, I've made progress when it comes to projections. The milestones still come, that is unavoidable- pre-school, swim lessons, etc.  Projection is a game which has no winners, and a type of speculation that really only ends in sadness. Similarly, the eternal infant paradigm is one I do not find comforting. The thought of James eternally 8 months old, his diapers forever in need of changing, stuck with two teeth poking out of his gums, is unfair to him. He surely deserves to grow up. He did deserve that.  So I avoid projections and focus on memory.

Memories  are painful only in context. Most of memories of James are happy ones. He was a fantastic baby, absurdly cute and very playful. He loved virtually everything, mostly slept well, and cried relatively little. James was the kind of baby who earned superlatives in the hospital. He laughed easily. These memories only become painful to recall in any sense if you contextualize them in death. That is unfair to them. On their own, they are outstanding. I try to remember that.

I do not pretend to understand the afterlife, but I have always thought at the very least one might entertain their own fantasy of what the highlights are. In my fantasy, James would welcome me as the man he would have been. My son. He would tell me everything about himself, that he was happy. He would fill in all the gaps on what we missed. I would tell him that he was loved, and that we were proud of him. He was a very brave boy. If you get to choose how eternity starts, that is the best I can hope for.

Today marked the end of a challenging month. October always is. July is better because his anniversary is closer to the middle of the month, and comes shortly after the 4th, a long weekend with plenty of opportunities not to think about loss. October offers no such respite, and the slow building festive cheer of the Fall provides an unfortunate contrast. Halloween, with all the beautiful children and their costumes, is unfortunately placed in this regard. In addition, I find birthdays difficult as they represent "what should have been" rather than "what was" and in children the former seems more important.

I visited James today in the afternoon. The weather is warmer than it should be, but absolutely perfect. We shared (quite unevenly) a cupcake I brought him. I've done that before, and I always try to pick a different favor. I don't know his favorite. I read, and wandered the grounds. All our old friends are still there. The woman buried closest to James nearly shares his birthday- October 30. Someone has been out earlier, and already brought her a Happy Birthday balloon. I brought one for James as well, as I do every year.  The neighbor and her husband died a few months apart, a full life. The two "Happy Birthday" balloons dance in the light breeze beside one another, as though someone decided to decorate the tables at a surprise party. The headstones in the background are somewhat incongruous. The garden we buried James in is nearly full now, and the cemetery expanding. New roads lead deeper into the old pasture, towards the crest of the ridge the place sits on. I do not know why I spent so much time here immediately after he died, but it is a place of great comfort now. Back then, I needed somewhere safe and quiet to go with my grief, and I found it here. I survived. I worry about the tree by his grave- every year it seems scrawnier than the last. I sing him his song, and Happy Birthday.

The drive home takes longer than it should, I stayed too late and wandered into rush hour. I barely notice. Some days, like today, I feel like I am on autopilot, coasting on reflex from one destination to another. To string together enough thoughts to plan something more ambitious is simply not in me. I have come to accept that you cannot win everyday. Some you only draw, and that is a victory.

I do not have a four year old today. But I still have a son.

I miss him everyday.

Thank you for your continued thoughts and prayers.

Wednesday, July 16, 2014

Three Years

James exploring his Crib





What do you write in year 3? What is there left to say? James died three years ago today, surrounded by his family. He was, in my absolutely biased opinion, likely the best baby in human history. At the very least he had the best hair. He was very loved. His family misses him. Everyday. The wound is not gaping, however. It has scabbed, scarred, and come to resemble something that in triage might be relegated closer to the back of the line than the front. The initial trauma has passed. Coping strategies have evolved. The pain remains, but that is unavoidable. In many ways, the pain breathes life into him now. It is a reminder.
Not a day goes by that I don't think to myself "If James were still alive, then" It's a horrible conditional phrase, one reminiscent of high school algebra or very poor computer programming. The examples are endless:
Some relate to my own decisions, a conditional phraseology that attempts to recreate a now extinguished paradigm:

"If James were alive, then I would not have bought that car." I bought a convertible. It was profoundly selfish.  The car is completely useless. Then again I have no children, and therefore no need for child friendly back seats. Even so, I bought a convertible with child seat anchors. Just in case James happened to drop by.

Some relate to James himself, a profoundly unhelpful exercise with endless possibilities, all of them tragic:

"If James were still alive, then he would be in pre-school." And talking. And walking. And everything. His teeth would be coming in. He would have been four this year. He would be smiling. Growing. Sometimes the details are startling precise- shoe sizes, clothes size. Other times they are more general, e.g., If James were alive, I would know the sound of his voice. One cannot venture far down the rabbit hole. There are no happy endings.

Some days, the most mundane activities can bring it on:

"If James were still alive, then I would need to buy (baby food/diapers/etc.)" Some of these are completely immaterial now. With any luck, James would be out of diapers and have graduated from gerbers. Then again, I don't know what you buy for a our year old. That bothers me more than anything. 

But I think "If" almost everyday, one way or another. I rarely wonder why anymore- that point is moot in my mind- but I absolutely wonder if. In many ways, my entire life turns on the axis of James' sickness and death. There is before, and there is after. I cannot explain my existence in any other context. I would hardly know myself without it.

I talk to him sometimes. Mercifully never out loud. I ask him rhetorical questions, "James, what do you think of that?" I tell him about my day. "Hey James, I saw this awesome post about a hotel that giraffes live in. You would love it." Sometimes I just tell him that I love him, and that I miss him. 

The evolution from crippling sadness and grief, the kind that leaves you disappointed when you wake up in the morning not because you want to die but because you simply have no interest in continuing to be alive, to something more manageable comes in fits and starts, and never along the path anyone promises you. I do not imagine that anyone's path looks the same. I would hope not, because no one's loss is the same. 

I am not healed. I do not want to heal. I want to remember my son fondly and constantly, with joy for the time we had together. His entire family misses him and loves him. We think of him constantly. He is our angel.

For those of you who have made donations to James' fund, thank you. Last year we made a $15,000 contribution to ATRT research being conducted by Dr. Charles Roberts at Dana Farber Cancer Center in Boston. I had the chance to have lunch with Dr. Roberts when he was in Dallas, and he is absolutely committed to his work. Though the prognosis for ATRT remains extremely poor, it is gratifying to know that so many brilliant people are working to create better outcomes. Visit Dr. Robert's lab's site to learn more.

Thank you all for your continued thoughts and prayers.

Monday, November 25, 2013

Thanksgiving

James and his Uncle Patrick



The above picture is of my brother and James. My father is holding him. The band-aid on James' hand is from one of his last IVs. James has his port in this photo and fortunately he required fewer IVs after the port surgery.

When I wrote that last sentence, I immediately began writing another. My mind spiraled from James' port to the chemo drugs he never needed that it was designed to deliver, to the TPN he did need his last few days alive. From there to me taking each custom made bag of TPN out of the outside refrigerator when he died and tossing each into the trash, unable to look at them lying on the bottom rack, promising a week's supply of food and life for Sikes/James Camden. To the trash can in his room where two years later I found the empty wrappers from the many drugs we did have to give him and my strange, complete unwillingness to throw them away.

The spiraling happens. An involuntary tic, it seizes you and for a moment can take you right back to chilled hospital rooms, saline and morphine. This is unavoidable. I used to think you could avoid it, but that is a fantasy, and not a helpful one. The best you can hope for is management.  In the beginning a detour like that might cost you the day or the week. Over time you can hope to cut that to minutes or hours. The day can survive. You can survive.

In that picture my brother is engaged. Six months after James died, he was married. James was supposed to be his ring bearer. My cousin took his place. A year after he was married my brother and his wife announced they were expecting. Nine months later, my nephew was born. James' cousin is now two months old and mercifully looks nothing like James.

Life moves on. Its rhythm is singularly unmoved by your personal catastrophes. That is difficult to accept when your world implodes, but is absolutely true. There are babies littering my Facebook news feed who were nothing more than a hope or a dream to their parents when he died.

The holidays and the attendant motivation of these parents to monsterize, turkeyize, and santaize their babies in (admittedly sometimes adorable) costumes and outfits always strikes a chord. James had too few holidays. he barely caught Halloween and did not really understand all the fuss about Christmas and Thanksgiving. He spent July 4th in the hospital, though appropriately attired. The boy was always well dressed.

The first round of holidays was the worst. Unbearable almost. The next improved. The spiraling continues but can be contained. The benefit of life going on is that you can go on with it. I will never "get over" James' death, but I can have a life I am proud of with people that I love. I can enjoy them, and enjoy my memories of James. I can sing him Christmas carols at the cemetery because I believe he can hear me. I can hold my nephew in my arms and think not only of my son's death but his cousin's life. It doesn't have to be either/or.

I am thankful for all of that and for James. While I suspect I will always approach the holidays with trepidation, I am thankful that I can look forward to them now as well.

Thank you for your continued thoughts and prayers.






Tuesday, July 16, 2013

Two years

Two years. That's the number. Two trips around the sun. One and a quarter more than James ever made himself. People don't always know. "I didn't know you had kids" they'll say. I don't lead with it. "Hi, my name is Matthew, did you know about my dead son?" Conversation killer. But when they ask, I'll tell them. "Yes, I had a son. He passed away a few years ago." This answer is incomplete. Criminally so, but any explanation is.

I had a son. I had a son born with blonde highlights and dark brown hair. He came in a C-section, sunny side up. He never followed the plan well. There was so much hair the hospital nurses stopped to stare. He was very popular. I had a son I first bathed in a sink in a hospital, my hands trembling for fear he'd break. I had a son with eyes so blue you'd swear you were looking at the sky. I had a son who would not take a bottle, but who would sleep through the night. I had a son who  was a horrible napper. I had a son who was always small, but who made up for it in volume. He didn't cry often, but he yelped as soon as he was able, and often. I think he would have been quite a talker. I think about that all the time.

I had a son who liked to feed himself, though he never mastered the art. I had a son who did not like to stay still; I had a wiggle worm. I had a son who could work his way across a room one inchworm crawl at a time. I had a son who did not like pacifiers unless they came on the heads of animals.

I had a son who got sick. Small things at first. Vomit. A passing stomach bug. A quick trip to the ER. A few hits of zofran to send us on our way. I had a son who got much sicker, encephalitis masking a tumor. A tumor presaging cancer. ATRT, atypical teratoid rhabdoid tumor. I spelled that wrong the first time I wrote here. I'd never heard of it. No one has. One tripped gene in one cell, one in a million. Like wet tissue paper growing faster and faster. Wet and soft means it grows fast, too quick to attain mass and density. Faster than the surgeons could work, and much faster than chemo. Too fast to even try the last.

I had a son who smiled through it all, who fought so hard it made my heart break. Who laughed after surgery and tried to play with his lines. He always smiled, and still rarely cried, though I cannot imagine the kind of pain he must have been in as the tumor grew and snaked down his spine. I had a son who made my heart break with pride. I could not have asked for a better one.

I had a son we buried in a poplar box, special order. Wearing a orange and blue striped polo. With his giraffes, like always.

I had a son I miss everyday. I have a son I will never forget, and who I will always love.

Thank you for your continued thoughts and prayers.

Monday, December 31, 2012

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.

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

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.