Every year, my son has a birthday that I didn’t think I’d get.
Since the age of five, he’s never gone more than a day or two without a seizure. There were times when he wouldn’t go an hour without one. And there were times when he was in status, and he wouldn’t stop seizing at all.
The first few years were especially scary. We would spend weeks admitted to the neurology floor of the children’s hospital, watching as the medical teams fought to keep my son alive. I would wake up next to him in the middle of the night to find doctors conferring, trying to find the next medication or treatment to try. His therapists would come during the day to help his body relearn what it had forgotten how to do. Each birthday we celebrated during that time was a gift, even if the time between them was unbearably hard.
Even after he was stable, his future was uncertain. The medications that reduced his seizures didn’t control them completely. That’s when his doctor introduced us to SUDEP (Sudden Unexplained Death in Epilepsy), and the leading risk factor is the presence of uncontrolled, generalized tonic-clonic (GTC) seizures, especially if they occur at night.
If I didn’t sleep before, I certainly wasn’t sleeping after that conversation. We installed a camera in his room to monitor him while he slept. I woke with every sound, every movement—or when there was too much time with neither.
Even this morning, as I was writing this post, I heard my son have a seizure in his room. It was longer than usual, so I used the VNS magnet and then his rescue medication before the seizure stopped.
As he turns sixteen, that’s more than eleven years without sleep. Eleven years of worry. Eleven years of hoping for another year.
And for eleven years, I have been given another year. Each one feels like a small miracle.
The fear never really goes away, but neither does the gratitude. I still hold my breath with every seizure, but I also get to watch my son grow taller, tell jokes, and dream about what comes next.
Sixteen years. Eleven years of worry. But also eleven years of laughter, stubbornness, love, and life.
Every year is another year I didn’t think I’d get.
Baseball season may be over, and my son and I have started playing catch almost every day in the yard. He had such a good season, and hearing stories of how professional athletes practice every day inspired him to do the same.
I remember playing catch and baseball with him when he was younger. We started with a padded, big-barreled bat and a stuffed ball. I’d gently toss the ball, and he would mostly pick it up from the ground and try to throw it back. It was a huge milestone when he started to catch the ball.
As he got older, we moved up to a baseball and glove. He struggled, like most of us, to work on those muscles to squeeze the glove closed when he caught the ball, so sometimes the ball would fall out. But as he got older, stronger, and practiced, those muscles and the softening glove made it easier to keep the ball in the glove.
Over the years, we introduced ground balls and popups, with the ground balls getting faster and the popups getting higher the older and more skilled he got.
I have these thoughts as I watch him now, catching balls on the backhand and making solid throws into my glove. I can throw it harder to him, and he can throw it harder back, creating a solid smacking sound as the ball hits the glove. If I don’t catch it just right, sometimes I’ll feel a sting in the palm of my hand or on my thumb if the ball doesn’t catch the netting correctly. I’ll exaggerate a grimace, and my son will feel like he threw the ball as hard as a major league player.
It’s to the point now where we will take turns catching the ball, flipping it into the air with our glove, catching it casually in our throwing hand, and returning the ball in a series of smooth motions. Sometimes he’ll add a spin or flip the ball up between his legs and catch it. Such showmanship!
It’s been so amazing to come home after work and for him to ask me if I want to go outside and play catch. “Of course,” I’ll say. Spending one-on-one time with him every day is important, and playing catch with your son is something most dads aspire to, and we’re doing it. No matter how tired I am, even if we only play catch for 15 minutes, it’s worth it. And I know he enjoys it, too. Even after a long day at school, he’ll come home tired and rest for a bit, but then ask me to play catch when I get home.
The other day, we went out to play catch. After a bit of warming up, we started walking farther apart to increase the distance. As we did, we began to both add flair to our catches before returning the ball.
My son threw the ball a little low, so I bent down to catch it in my glove. I stood to return the ball and, at first, thought he was doing some kind of dance while waiting for the ball. A few seconds later, I dashed across the yard. It wasn’t a dance. It was a seizure.
My son hasn’t had a daytime seizure in a long time. Most of his seizures are in the early morning while he is sleeping. Occasionally, if he’s exhausted, he might have one going to sleep at night or during a nap. But we haven’t had a daytime seizure like this in years. It reminded me of the seizures he would have when this all started while he was playing tee-ball.
The seizure wasn’t very long, but I got to him before it ended. He was still standing, his hands stiff in front of him and his body jerking in rhythmic motions. Once that stopped, I helped him sit on the ground.
He was postictal, his lips smacking as he started to come around. I rubbed his back as we sat on the grass, telling him that I loved him and that he was going to be ok.
“Did I have a seizure?” he asked.
“Yes, pal,” I replied.
It struck me as I sat there with him that I hadn’t seen a seizure like that in person in a long time. Usually, I see them through the camera in his room. There is a sense of routine to those. I wake up and watch the monitor to see if I need to go to him, but most of the time, he rolls over and simply falls back to sleep.
But this one was right in front of me, in broad daylight. It reminded me of the seizures he would have playing tee-ball. The seizures would attack in broad daylight, in front of everyone, as my son tried to play. It was hard not to be brought back to that time as the feelings of fear and desperation that I felt back then tried to resurface. I did my best to push them away and comfort my son, hoping this was an anomaly rather than a sign of things to come.
Once he recovered, I brought him inside to cool off and rest. My wife came down, and we sat on the couch and watched a movie as a family. I watched my son as we settled in. I don’t think he remembered what it was like to have a seizure, either, and I could see him work through his feelings. Eventually, he leaned into my wife and focused on the movie, little laughs coming as the characters did something funny. I started to let my guard down, too, and settled next to him.
Eight years in, seeing a seizure doesn’t get any easier. But the way we respond, with compassion and love, helps connect us and push away the fear and the darkness.
For the last few weeks, we’ve been temporarily living in Maine.
I love living in Philadelphia. But between being confined to the close quarters of a condo and the current tension in the city, we decided we needed space. While we are all working from home, this is also a rare opportunity where home can be wherever there is internet, and that includes the Pine Tree State.
Whenever we go somewhere new, there is a part of me that wonders if it will be the place where epilepsy can’t find us. I wondered when we went back to Colorado. I wondered when we visited my family in Florida. But epilepsy found us in those places. I wondered again when we traveled further…to Hawaii…to Panama. But epilepsy found us there, too.
Still, as we took the 10 hour drive from Philadelphia, there was a part of me that still wondered. It wasn’t a good sign when my son drifted off to sleep in the back seat that a seizure work him from his nap. But we weren’t yet in Maine, though, so there was still hope.
As we pulled in to the driveway of the house we rented, I had a good feeling. The house was on a peninsula, surrounded by water on three sides. There were steps down to a rocky shore from the front of the house and a path down to a big, sandy beach from the back. There was a big yard for baseball, and trees blocking the view of any neighbors. We were secluded. Hidden. The sun was out. There was air…cool, salty, fresh air. Our getaway had everything we were looking for, and maybe the right ingredients to keep any seizures away, too.
When the first seizure came the next day, I chalked it up to exhaustion. The long drive and the late night exploring the house were the likely causes, and that shouldn’t be held against Maine. The seizures the next night were obviously caused by the long day spent in the water, fishing and finding shells and crabs. Our bodies just weren’t acclimated yet, so those seizures shouldn’t count, either.
But by the third day, and the fourth, and most days since, I haven’t been able to explain away the seizures. They happen after we are outside on a sunny day or after relaxing inside on a wet, foggy day. They happen after we go exploring and after we hang out watching a movie.
Wherever we go, we won’t be able to hide from epilepsy because we take it with us. We pack it up like the bottles of seizure medication and the special ingredients for my son’s ketogenic diet. It finds room in the car no matter how little space is left after we tightly pack our belongings.
But even though I want to write a post like this every time we go to a new place, trying to hide from epilepsy is not the reason we travel and have adventures. We do them because our son is a fearless explorer. We do them because we can. We do them because we won’t let epilepsy and seizures limit the experiences we can give to our son.
There is nowhere we can go where epilepsy can’t find us.
