The blinks come hard. Not flickering or spastic like I saw in a seizure video, where a boy in a highchair tensed from what seemed like an electric shock as his eyes blinked rapid-fire. No, her blinks are isolated, far apart. Blink…. Blink. And nothing else in her body seems disrupted. But as I said, they’re hard, like exclamation points, her lids squeezing tight. What is she doing? Why is she doing that?
And here begins the Choose-Your-Own-Adventure of special needs parenting. Option 1: She’s having seizures. This is where my worrying mind goes, faster than a blink itself. Seizure, seizure, seizure. (See How to Detect a Seizure for a snapshot of this low-level state of anxiety.) Turn to page 65, the Choose-Your-Own-Adventure books told us as kids, and on page 65, we’d learn if the monster was really behind the door.
But there is no actual book here. Just fact and truth mixed with smoke and mirrors, all spinning possible stories in my mind. Deeper into the “It’s a seizure” story, I know future pages would bring: a new neurology appointment, another EEG, daily meds and the adjusting of doses and the cost-benefit analysis of fucking with one’s brain when one’s brain is fucking with oneself. Option 1 is stomach-churning, a heap of stress on top of the already stressful. So Option 1 is followed immediately by denial, that turning of the face to admire something, anything else—a sunset, a tree—even as monster-shaped shadows might very well be creeping closer.
And so, Option 2: She’s got something in her eye. That must be it. An eyelash. A fuzz. A strand of the wool carpet that sheds like shedding is its job. She’ll blink it out. End of story. This stupid Choose-Your-Own-Adventure book will get chucked and forgotten by tomorrow, its pages curling upward with too much reading and wetness. I’ll laugh about it. Hey, remember when I thought an eyelash was a seizure? That was crazytown. Silly me.
Option 3 doesn’t present itself as an option so much as a revelation. Out of the blue, I wink at her. I wink at her because the conversations we have get tiresome, with my words and words and words, and with her mm’s and mm’s and mm’s. I wink because it is another way to link up with my bright-eyed, non-verbal girl, to say, “We’re in this, kid,” and “I love you, kid.” I wink.
Then, hard as any exclamation point, she blinks right back. Eyes squeezing tight. She’s not compelled by some brain-misfire to blink, nor is there anything, a single micro-fleck, in her eye. She’s not squeezing a monster out of her vision. Dear God, she’s trying to wink back.
I smile. I laugh. She smiles. She blinks. It’s awesome. Out of all the things we are trying to teach my daughter—how to wave goodbye, point her finger, push a button, drink from a straw, chew with her molars—she has decided to devote her energy to blinking. I laugh again until I sigh, and I sigh at this:
In another parenting universe, where my daughter has no such thing called Wolf-Hirschhorn syndrome, a hard blink would not be an adrenalin trigger. In another parenting universe, my fight-or-flight response wouldn’t be always at the gate, always at the ready, waiting for the gun to say Go.
In this other parenting universe, my first hours as a new mother would have elicited those bliss chemicals I’d heard about in my natural birthing classes, a cocktail so potent that women describe falling in immediate love with their slippery, naked babies. Instead, there was a tightness in the midwife’s voice when she told my husband, “Cut the chord,” and when he said, “But we were going to wait until…” she barked: “Cut the chord!” My four-pound-something mystery was whisked away. And thus began my motherhood: With panic. With fear. With a monster on the very cover of the book.
There are few things I curse, but one thing I curse is this: I didn’t get the first hour to melt fearlessly in love with my child, to bathe in the warmth of oxytocin and bliss. At the very start, the very first second of this motherhood road, the very first sentence of the story, there was fear. Adrenalin showed up like a snorting, anxious racehorse, then and forever at the ready, at the gate.
So what I mean to say here is this: Even as I love when my daughter eclipses my fear with pure delight—she’s trying to wink, and it’s super cute—I also mourn for the life that doesn’t have to hold these two things—the fear and the delight—in such painstaking balance, on such an even scale.
She blinks. I wink. I smile. I sigh.