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.