Monday the 16th

Here is James in one of his signature poses, back arched, legs akimbo. He loved squirming.

Friday the 13th came early this year. More troubling is Monday the 16th, our half-year anniversary. Half a year gone and it seems as though we’re still spending time spinning our wheels in the mud, stuck in James’ room that last day doling out shots of morphine to him on the hour, his nutrition long since discontinued as unnecessary. There’s really no sense in eating right before you die, and certainly not in intravenous form. We went home with three or four bags- enough for a week. Each one cost something like $5,000 dollars, or was it $15,000? The costs were all so astronomical that they’re almost nonsensical. I never bothered to review the itemized list of services. Why bother? None of them worked. Each bag perfectly calibrated for James. We thought we’d at least get through a week. We barely got three days. Afterwards the unused bags lingered in the refrigerator- the one thing missed by the hospice nurse on their sweep. I tossed them, furious they'd missed anything. When James had his surgery less than three weeks before they thought the 18th would be a fine day to start his chemo. No one thought we wouldn’t even get to that day.

We thought he was gone a few times before it happened, but each time he came roaring back to us after a minute or two, refusing to die. He had such a fierce spirit, even at the end. It broke my heart. We kept telling him it was ok to die, all right to go, that we loved him always and we’d be there as soon as we could. When it finally happened it was different. You just knew.

I suppose you always do. I wasn’t with my Grandfather or my Grandmother when they died. I didn’t make it back to Louisiana in time for my Grandfather, and our family didn’t make it to the hospital in time for my Grandma. The nurse called us that morning when things got bad, but between the hotel and the 15 minutes to the hospital she died. I got another call from the nurse in the parking lot asking where we were. I said we were pulling in. He didn’t say anything. I knew why he’d called, but I didn’t say anything either. With each, I arrived only after death and missed the passing, and with each I was confident they’d led a life worth living, that the end of that life represented the culmination of something great and worthy. I didn’t feel any of that when James died. His passing was horrible, a desperate moment seared in my mind that plays back over and over again on the bad days. There was no end here of a worthy life, just the premature conclusion of one that never really got going. James was such an active, brilliant boy. Always so engaged wit the world around him. Anything but boring. He didn’t even like naps- as miserable as that could be. I had so many dreams for the boy and the man he would become. We had so much left to do together, football games, bike riding, fishing in the summers. He had so many things left to do on his own too, high school, college, marriage, a family of his own. How desperately I wanted to know him. There is a pervading sense of wrongness about the whole thing. It just shouldn’t be this way.

But it is. As horrible as it was, it is. All of those dreams remain just that, alternative realities that will never play out. I try to remind myself of all the good. In situations like this, you really only have a few options. You either break down and become defined solely by what happened, or you try to do something with it. There’s no just avoiding it- you either do something with it or you lose it. I’m trying the second option. I try to remind myself of all the wonderful things about James. James graced our lives in many ways, and I am forever changed. I’m not going to get “over” this. I’m just going to be a different person- that’s really all there is to it. What remains unanswered is exactly how its all going to sort out. The jury's out on that. I do know that above all, I am grateful for the time we had with James. He is irreplaceable. And no matter how horrific those last few hours were, I wouldn’t change anything about James or our time with James but the ending. We extraordinarily blessed to have him as our son. We remain so.

Thank all of you for your thoughts and prayers over the last several months. It means a lot.