He habituates to peek-a-boo. Mommy's gone! Surprised baby eyes widen--she's back! A gaping gummy grin. But after five times, the smile is no longer quite so wide, the surprise is gone. He looks away. I rejoice and call Justin. "He's habituating!" A cognitive milestone. A goldfish doesn't habituate.
He thinks his crocheted blanket is interesting. He sticks his tiny hands through the holes and brings the blanket to his mouth, examines it. He finds his feet. And stranger anxiety at four months! Impressive, the pediatrician says. He modulates his cry, makes "d" and "g" noises. Elegant mid-line movements, the extinction of his infant reflexes. All of these things, signs that his IQ may be "normal" and that one day, he may be able to talk to us, I drink like cold water.
But when an ex-coworker says over the phone, "He had a shaky start, didn't he! Goodness! But he's a normal little guy now"--the room spirals. She asks me to do the emotional work of bursting her bubble. In the process, I burst mine too--and mine is so much bigger and I ride on it. It buoys me up and carries me through the day to day of living with a child with brain damage.
"Well, we can't say that yet. It's wait-and-see. Don't count your chickens before they hatch. He could still have severe intellectual disabilities and be nonverbal." And I have to say these words out loud, because if I don't, I may start to believe--and I want so badly to believe--that nothing happened.
Believing that nothing happened is a recipe for the abyss when we find out--which we will, according to the pediatric stroke specialists--about the extent of his deficits. "He will not escape from this unscathed," she said. Behind her, on the computer screen, bilateral, wide and careless white splashes marked Teddy's MRI. "The best case scenario is that he started out as a genius, so the strokes knocked him down to an IQ of 100 and maybe you won't be able to tell." Still, the stroke specialist prepares us for tablet talkers, for an IQ below 70, for finding caregivers for him before we die.
Justin says, "Now I want to live forever."
And so I burst her bubble.
She says again the dreaded refrain that follows me everywhere I go. "The brain is so amazing though! Plasticity!" as if it's the first time I've heard the term.
"Yeah, OK," I say.
Her voice bubbles over the phone. "I, for one, am holding out hope!"
With that, comes the wound. The assumption that my realism means her hope is bigger than mine. The idea that she, a casual acquaintance, cares more about my one and only precious Teddy's future, the child cut from my body, the child I hold on my chest every day and pray over, the child for whom my world revolves. I dream every night that he is dying, that he is dying and I can't get to him. My legs won't move as the gunman draws near. She cares more than I do, who wailed for him, parked in a wheelchair twelve hours post-Cesarean, trying to stand to get down to the NICU as he had a sixty-minute seizure on a ventilator and I couldn't get to him. She cares more because I won't acquiesce to her gut feeling that he's "normal," because I won't let her feel better and get on with her day.
"Let is slide off you," others say. "People mean well." Do they though? Or do they care so much about their own emotional well being, that they can't abide the fact that an acquaintance's baby faces an uncertain future?
"I, for one, am holding out hope!"
"Me too," I say, thinking about his habituating to peek-a-boo, about his wide blue eyes finding me and laughing. "Thank you," I say. I hang up the phone, shaky.
And then, again, I face the monumental task of blowing up the bubble that will carry me through these unendurable wait-and-see days, these days that only a parent of a child like mine can understand.