Be on low-level alert at all times. Security code, orange. High risk of attack. High risk because 92% of children with Wolf-Hirschhorn syndrome have seizures of some kind.
Know that her seizures do not have to look like TV seizures. Not necessarily any foaming at the mouth. Not necessarily grand tremors of the grand mal kind. Sure, those have happened. In fact, until recently, those are the only ones that have happened, and always with a fever. But know there are others:
Little twitches in a hand, a foot. Or rapid eye blinks. Or falling over. Loss of all muscle tone for one half second. Or cruelly, excess euphoria. The other day, the mother of an epileptic son wondered on Facebook, Is my baby just extra happy today, or is his brain misfiring?
There are also the absence seizures, when a kid goes spacey. As a parent of a kid with Wolf-Hirschhorn you have to look for those too. When a two year old I know spaces out at a party, I am boggled that her mother doesn’t have to wonder, Seizure? I am boggled by a life that doesn’t require that mother to shout her daughter’s name in a desperate, panicked tone, hoping the child responds, which would mean, No, the child is not seizing.
I am also boggled when my five month old rolls onto her side and jerks her arms and legs: Seizure!? I think, because I cannot help myself. But no, of course not. No seizure.
Sometimes, when one of my two children makes a spastic sound or gesture and I don’t know who it is, I look over and see that it’s the five month old. I exhale relief, thinking, Not the seizing one. If they had descriptive names, would that be hers? She Who Does Not Seize?
The seizure can be detected in the eyes. The eyes of the seizing child can dilate unevenly, can roll upwards or slantways, can appear to track an invisible star that falls in slow motion. She Who Seizes did this once: absorbed a slow-mo meteor descending the living room wall.
The eyes can fixate alarmingly at the ceiling. Lights on and nobody’s home, a neurologist once described to me.
A week ago, my husband was away for the day, two hours by car from dawn to dusk. What if she seizes? I thought, and then I pushed the thought down like a crumb into a couch cushion. What if she seizes? is a constant question I wake to, shower with, sleep with, and for the most part, she does not seize. I ignored the concern.
She was sitting on a stool so that she could work her trunk and straighten her spine. She toppled over, which she sometimes does, but when she landed on her side, her arms were faintly twitching.
Seizing? Struggling to get up? Seizing? I didn’t know. What do the eyes say? Her head was turned away from me.
I sat her up. Okay? You okay? I said, holding her body upright, trying to catch her eyes in mine. She returned the gaze, then looked at something else. Lights on, my daughter is home.
You okay? I asked again, like something in the universe would tell. The truth is, I didn’t know. I had three choices: Decide it was a seizure. Decide it wasn’t. Reside in the gray area.
I decided it wasn’t.
But the experience made me rethink a moment earlier that morning. She was sitting in her high chair. She tipped over. She sometimes tips to one side, rests her head on the tray of her chair. But this particular tip-over rang a little alarm. Mommy intuition? Paranoia? Afterwards, she clawed and clawed at a spot where no cheerio was. She gave up grabbing.
Decide it was a seizure? Decide it wasn’t? Reside in the gray area?
I am inventing seizures, I told myself.
The next day, my husband was holding her in the kitchen. She tipped to one side again, and he righted her. I looked into her eyes.
She was not there.
How do you describe when the consciousness of your daughter is gone from her body? Did I see a dilated eye? An unfocused gaze? I can’t recall. I just knew for sure: seizure.
And here is the thing that gets me: Like always, just as it happened, I called her name. I call to her like she is slipping into a well. “Fiona!” I call to her like my voice is a rope and I can bring her back. Fiona! Don’t go there. Don’t leave. I do this even though I know the medical truth. My voice won’t stop her. To seize: to take hold of, suddenly and forcibly. Neither love nor words will stop the Seize. All I can do is wait for it to end, wait for the Seize to return my daughter and hope it did minimal harm.
If you’ve made it this far, I know you’re wondering: We haven’t seen any seizures since. A new neurology appointment has been booked.