Sarah Stultz: Living life with a loved one with epilepsy

Published 8:45 pm Tuesday, November 7, 2023

Nose for News by Sarah Stultz

I remember clearly the first time my son had a seizure. He was 7 days old, and it started with his eyes.

Looking back on it now, I compare it to the second hand on a watch as it moves every second around the clock — tick, tock, tick, tock.

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Landon’s eyes started blinking rhythmically, but there was no other shaking involved.

Having zero experience at that time with epilepsy or seizures, we weren’t sure what was going on, but we knew it wasn’t normal.

Living so close to the hospital at that time, my husband and I drove right there.

They quickly got us in, and before too long, Landon had his first grand mal seizure while being treated in the emergency room.

As parents, we were distraught as we watched our newborn get boarded and taken out to a helicopter where he was flown to Rochester.

By the time we got to St. Marys Hospital, a flood of people had descended on Landon trying to figure out what was happening to our precious little baby and how to stop it from continuing.

While we knew right away from doctors that he had experienced seizures, we didn’t know immediately that he officially had epilepsy until some time later.

That began our almost 12-year up-and-down journey with seizures, of trying to find medications that his body would respond to, of injuries because of falls tied to seizures and of adjusting to what has become our new norm.

I’ll be the first to tell you it has not been easy. You know the phrase of sleeping with one eye open? That’s how I’ve felt I’ve had to live sometimes as the mother of a child with epilepsy.

It’s stressful, and oftentimes you’re living on edge.

For a while, Landon lived with a helmet on as he would experience multiple seizures in the day, and he could literally drop from standing to the floor, hitting his head and other body parts as he came crashing down.

I share this with you not for pity but to raise awareness of the challenges families of children with epilepsy face.

This month is Epilepsy Awareness Month, a time set up to reduce stigma associated with epilepsy.

According to the Epilepsy Foundation, one in 10 people will have a seizure, and one in 26 will develop epilepsy during their lifetime.

Epilepsy is a neurological disorder that can affect anyone regardless of age, race or gender, and there should be no reason that anyone should feel shame or discrimination because of it.

There are many resources at the state and national level to help people and families with epilepsy, including education, training resources and even support from other families.

If you’re on this same journey, remember you are not alone.

Sarah Stultz is the managing editor of the Tribune. Her column appears every Wednesday.