Saturday, October 29, 2016

Sixth Birthday

About a year before James was born, on Labor Day in 2009, my left ear started ringing. It never stopped. For the first few weeks, I thought it might drive me insane. Wake up, ringing, Go to sleep, ringing. I saw doctors, all of whom concluded it was simply a product of the severe conductive hearing loss I was born with. I tried a surgery to plug the ear canal drilled for me when I was in third grade.

None of this worked. In fact, over the years the tinnitus has simply gotten worse and expanded to my right “good” ear. The end result is that, for me, there is no silence. This is profoundly unpleasant, but it’s best not dwell on it. If you sit and focus on the ringing all day you’ll never have time to do anything else, and it’s a losing battle to begin with. Your are singularly incapable of improving your situation, and can only degrade it. Tinnitus is simply your nerves trying to fill the gap left by the absence of sound. Sound should be there, and your brain knows it.

Today is James’ 6th birthday. Six. If he were alive today he’d be blazing through milestones. Kindergarten, first day of school. He’d be developing his own interests, his own new personality, slowly beginning to edge to the threshold of independence, albeit only a toe at a time. Dinosaurs? Sports? Something i don’t even know about? I wonder these things. The more time that passes the further the deficits pile up, the more remote and uncertain any projections become. I hardly know how James would have been at six, though I do wonder.

Every birthday I run through this exercise, with diminishing returns. I have a decent, if imperfect, idea of what James might have been like at one or two. At six? Pure conjecture. The man he might have been at 18, 30? Impossible. That is a difficult reality to accept, because although James is gone he is always with me. It is impossible to leave your children anywhere once they enter your heart and the grave is no exception.

Six birthdays without James and five years later, the loss of James is a bit like an emotional tinnitus. The hurt is constant, always there, hovering in the background, ready to surge forward given the opportunity and overtake your consciousness. It’s matured. The keening, wailing all consuming pain of the first year or so subsides, the uncertain question of whether or not you would emerge answered in the affirmative, if only because you remain alive.

The pain doesn’t leave though, it simply becomes part of the background noise that is your life. A constant, open wound, but one you know how to walk with. Over the years you’ve gained tools. Allies. Strength.  You don’t even want it to heal, not really, because that would impugn the love that gave life to it. You want to remember, always, fiercely and urgently. You accept, however, that you must also live. He would want that.

Every birthday that comes around reminds me of this. There are two options. The first is to spend all day playing the “what if” game. What if James were kindergarten? Would he like his teacher? What would they be learning? What if James didn’t die. God, I wish James hadn’t died. That last statement is the only important one. I would give anything in my power or beyond it for James to still be here. But that’s not my choice. This first exercise can only end poorly. The rejoinder to “what if” is always “why not” and the answer “because he died. He got cancer and he died” can only end in sorrow, regret and misery. I try, though I do not always succeed, to spend my time practicing the second:

Today is my son James’ birthday. James was my first child, my son, and I loved him dearly. I will forever have had the privilege of being his father, and I am honored that he shared two of my names and that I was lucky enough to spend eight months and seventeen days taking care of him. Cancer or no cancer. I wouldn’t trade a minute of it. On his birthday, I remember him. I remind those around me of him, and I beg of them to do the same.

My heart remembers. The pain is simply a way of making a sense of the absence. If James were alive, he wouldn’t just be six. It would be his birthday. He deserves to have it celebrated.

Happy birthday son. We miss you. We remember you.

Thank you for your continued thoughts and prayers.

Thursday, July 21, 2016

Five Years Later

I remember.  Perhaps that is all that remains, five years on.  Our father son relationship long ago exited the kind of linear progression I initially envisioned with his birth.  Walking, talking, elementary school, junior high, high school.  Awkward advice chats about how to handle girlfriends.  Well-meaning instructional sessions on how to throw a football and a baseball, though god knows he’d be better off learning all things sports from someone else.  The most I could contribute would be lessons in the fine art of armchair quarterbacking.  James and I will never share those kind of father son moments, in our last moments he will always remain eight months and 17 days old, full of promise and aspiration.  I will never know the five and a half year old boy he’d be today, on the edge of kindergarten and a brave new frontier.  I would have liked to, but he’s only a projection now, more uncertain in nature with every year.  What remains is memory. 

That’s all I can do for him on a certain level.  Sure, I can raise money for cancer, heighten awareness, but these all amount to varieties on a theme.  I give to charity or research, I post links reminding my friends to go gray for May.  It’s not for May though, and it’s barely for brain cancer, which I am interested in primarily and viscerally because of James.  It’s for him.  It’s to remind the world and everyone that he was here, that he got sick, that he died, and that he was wonderful despite all that.  I can’t post pictures of his birthday party or his first day of school.  I will never update his picture in my office.  All I can do is to pause now and again and remind the world that he was here, and he was loved.  He’s still my son, and I’m still his father.  I remember. 

I remember the first I saw him, rising in the doctor’s hands over the partition in the ER, the nurses scurrying to take him over to a table.  I followed mutely, or if I spoke I cannot remember the words because they had no meaning.  I remember a great feeling of awe washing over me as it registered that this had happened and the months of waiting for it to happen and the months of knowing it would happen were overcome by the staggering reality of it actually happening.  Somehow, it never seemed real until then, or rather I did not understand what it meant until then.  I never knew what it would feel like to be a father until then.  How could I have?  It was one of the happiest moments of my life.
I remember giving him his first bath in the hospital room a few hours later.  The nurse walked me through it and I was terrified I’d break him, drown him, or some combination thereof.  He was so small, and the nurse made a comment about his hair, thick and lustrous already.  People always said something about his hair. 

I remember the first time I took him for a walk, how paranoid I was about every little bump on the sidewalk, afraid I’d wake him.  James, of course, ultimately proved almost completely oblivious to bumps once he’d fell asleep, and amused by them when awake. 

I remember an afternoon I took him to the Dallas Arboretum, one of many trips, but the only one we took with just the two of us.  I tried, and failed, to pose him for a number of photos, resulting in a hilarious reel of blinking, confused, and smiling James photos that I still have.  In all of them, he seems to be wondering why I’ve been permitted to attempt this.  He’s absolutely right.  I remember giving up and retreating to the biergarten, it must have been spring, and drinking a beer him sitting in my lap, intently examining the passerby. 

I remember his laugh (loud) , his smile (wide, but low on teeth), and the way he lit up when someone new walked into the room for him to play with.  He had such a wonderful spirit.  He was so wonderfully alive, wiggling, rolling and crawling army style (he never mastered the coordination to include legs).  Engaged with everything. 

I remember later too of course.  The rapid escalation of illness from “unknown stomach bug” to “atypical teratoid rhabdoid tumor” over the course of little more than a month.  I remember James lying in his hospital bed and smiling despite the IVs, the shunt and after more procedures in a shorter time span than most people ever endure.  He never stopped laughing, and displayed more grace than I can conceive of.  He made us very proud. 

I remember my son every day.  I will always be immensely proud to have been one of his parents, and the last service I can offer him is to remember him.  I will continue to do so.  Five years later that’s what I want him to know.  We’re still here son.  We miss you.  We remember.