My Son Is Going Off the Meds

“There is no evidence on EEG to indicate abnormal activity or an active epilepsy. Assuming he has not had any seizures since I last saw him we can proceed as planned to reduce the seizure medications,” so says our doctor, the expert.

Whenever I hear the phrase, “abnormal activity” it sends me back to the good old “X-Files” days with Scully M.D. muttering over “paranormal activity” as Mulder scrambles down into some huge alien footprint. It just sounds otherworldly.

To me his seizures have always seemed paranormal — a thing that inhabited his body and made him shiver and shake and slump over like a Muppet off camera. So does this mean the thing, whatever it was that made his brain waves quiver, has left the building? It’s been three years since his last seizure, but also three years with the steadying medication coursing through his veins.

That’s 1,095 days of peace of mind.

Do we move forward? Do we cross that threshold?

It’s the pivotal point of any hero’s journey — the point of no return. Sam says, on the edge of the Shire, “If I take one more step, it will be the farthest away from home I’ve ever been.” Dorothy says “Toto, I’ve a feeling we’re not in Kansas anymore,” and then she hops
over the witch’s curling feet into a technicolor dreamland.

But here’s the thing. If we cross over, I don’t know what it’s going to look like on the other side. Each day, as I squirt less and less of the grape-flavored medicine into his mouth, I think:


and also

“Oh, crap.”

It’s a celebration of his changing self — the brain waves that are evening out a bit as he moves more solidly out of the shadow of those early days of trachs and g-tubes and oxygen machines and crazy high fevers that burned him from the inside out like a coal in the fire.

But what if this new place is really just that old place in disguise, the tree we will keep passing on the lifelong road trip, the seizure around the bend?

“What’s so wrong with a little medicinal buffer anyway?” I think as the leaves outside turn orange and crimson and finally brown. I can feel winter coming and with it the colds and flus that settle in like a fog until April. Can we weather this weather without something to keep the sickness from turning febrile?

I want to believe it. I want to trust the doctors, the gatekeepers to this new place. But his blond hair is currently curling in the breeze and he’s alert and rolling along in his wheelchair like a man in “Murderball.” I don’t want to risk that.

We can’t go back though, now that we’ve landed on the lowest dose the vial can hold before it turns to nothing. Hopefully this road will lead to better things… over the rainbow and all that jazz. Or maybe it just leads home to a safe place that isn’t manufactured through medicine. I would like a steady reality.

Either way we’re going to try — me, the mothering sidekick, and him the hero and son.

Follow this journey at The Mom Gene.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Seizure Disorder

Video monitor image of child

The Worry I Feel When My Son Sleeps In

I slowly wake up and see the streaks of sunlight shining through my bedroom windows. I stretch and listen for sounds that indicate my son is awake. I hear nothing but silence and the whirring of my sons pumps through the video monitor. I roll over and look at the time and realize I’ve slept [...]
woman in a beanie walking outside in a forest

8 Things I've Learned From Having a Seizure Disorder

No one is able to prepare you for your first seizure and all that follows after it. Your whole life turns upside down on a dime and you have to quickly learn how to navigate this new condition. It’s frightening, but you’ll learn new things about yourself and the world around you. Here’s an abbreviated [...]

When People Say 'I Wish I Didn't Have to Work. You're So Lucky'

“Wow, I wish I didn’t have to work. You’re so lucky. You must have so much fun.” I’ve heard these words too many times, and it’s not OK. Usually when people find out that I am not working they either don’t say anything or they respond with something like the statement above. And while not [...]
drawing of woman's face between green leaves

How Shorts in My 'Emotional Circuit Breaker' Cause Me to Have Seizures

It started with a migraine that wouldn’t go away. A day stretched to a week stretched to months, and still there was head pain, nausea, blurred vision and other symptoms. One day, my entire left side went weak, my arm and leg useless and my speech slurred for a bit before returning to normal. A [...]