“So, shall we talk about Liam now?” he says casually.
“Sure,” I reply, standing at the counter in the physio room, mixing lunch for Ben.
“When I cut into the brain…” he begins. And I’m thinking Slow down there, cowboy. A preamble would be nice. A ‘Before I get into details, I want you to know we did the right thing’ would be nice. I look at his hands as his words reverberate through the room.
“…it became clear that there wasn’t much left,” he continues. “It was just gone, huge chunks of it. Much of it was just an outer film, empty on the inside. We still don’t know if it was the bleed, or the oxygen deprivation at birth, or the hydrocephalus—but what brain was there was highly compromised (translation: mush), and the rest of what should have been there… wasn’t.”
Standing before him as he discusses the autopsy of my son, I recall this same doctor marvelling at the birth of neonatology at Coney Island, a medical sideshow of FETUSES OUTSIDE THE WOMB! and it comes back to me, what it was like to talk to these doctors.
Your baby makes for an interesting day at work. This is the wild west, and your baby is Billy the Kid. There is very little in the way of prognosis or explanation, but plenty of “Hey! Look at that. Geez. Let’s try… eeeny meany miney mo… THIS STUFF, and see what happens.” as they add chemical goo #43-161 to his central line.
This doctor in particular is as human as he can be. But like the rest of his kind he must be evasive, preemies being all about speculation and speculation being all about unscientific guesswork. Which leaves them sympathetic but muzzled in the face of desperate parents who sob please tell us everything will be alright despite every indication that no, everything will not be alright.
Standing there with a bowl of pureed carrot in my hand I remembered that resignation, the realization that my child amounted to a freak show, a curiosity with applause and collective gasps, and now dissection.
With words like that crackling in the air I try to remember that I love him still, that there is such a thing as souls, that he didn't need that worn out shell, that he doesn't hurt anymore.
He was so beautiful.
At eleven months old, Ben sits steadfastly at the 3rd percentile for weight. 97% of all eight-month-old babies (his adjusted age) are bigger than him. Try adding butter to his cereal, suggests the nutritionist, and I laugh and ask her if she’s serious.
Teensy in weight, not bad in height (25th percentile) and a surefire Pulitzer Prize winner in head circumference (95th percentile). And through two hours of developmental testing he and his big, shiny blues knocked it out of the park.
I look at Ben and imagine him with half his brain missing, wheelchair-bound and blind and seizing and wearing a diaper all his life and never speaking and my heart blows a fuse, and everything just shuts down.
Every time I think of Liam, the first thing that I speak, aloud or in-mind, is I’m sorry. I’m sorry my body did this to you. I’m sorry I couldn’t keep you safe. I’m so sorry. My Liam and my guilt are forever bound. I almost never voice this in conversation with loved ones because it’s too frustrating for them. Why do you torture yourself? It wasn’t your fault. Don’t be ridiculous they say, because they love me, and it hurts them to see, as they see it, me choosing to hurt myself. My head knows it’s ridiculous, of course, and knows the TTTS was a random sniper. But my heart still craves the torture.
I was going to write that when your body betrays your baby the result is the world’s most intense mind-screw—but I’ve changed my mind. Your body’s betrayal of your baby is the world’s most intense heart-screw. Love and apology, forever bound.