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.