Tag: seizure

Another Milestone He Cannot Reach

We sat in the exam room, waiting for the doctor.

It was his regular follow-up with his neurologist. She has managed his care for almost ten years. She has been with him through keto, multiple surgeries, and the rollercoaster of physical and emotional effects that his condition has had on my son.

This appointment, in particular, was one I had been dreading ever since my son brought up the topic of driving with his therapist. She suggested that he ask his neurologist about it at his next appointment.

This was that appointment.

There was a significant buildup between his first mention of driving and this appointment. I know it was on his mind, so it was on my mind, too. It wasn’t the anticipation of the question or the uncertainty of what the answer might be. The mounting pressure came from the finality of that answer when it was given.

The pressure built up slowly as the days went on. But the morning of the appointment, it spiked. Asking that question was the only thing on my son’s mind. He brought it up when we left the house. He brought it up when we got to the hospital. He brought it up to me when our appointment started, even before the pleasantries were done. I motioned for him to wait.

After his exam, his doctor asked if he had any questions.

I looked at my son and nodded, indicating it was time for his question.

He looked at the doctor and asked the seven-word phrase that he had been holding onto for weeks.

“Will I ever be able to drive?”

The pressure that had built up finally exploded, pushing the air out of the room.

I looked from my son to the doctor as she formulated her answer. I saw her shoulders lower as she took a breath. Careful, concerned, and compassionate. But also direct.

“Probably not,” she said. “No.”

I looked back at my son. I couldn’t judge his reaction. He sat there, taking a punch to the gut and not even flinching. He knew what the answer was going to be. And then he heard it. And then… nothing.

I knew what the answer was too, and it’s not like I was hoping for a different answer. I just hoped it wouldn’t hurt. I hoped it wouldn’t matter.

I finally took a breath. I wanted to just hold him. I wanted to find a positive spin. I wanted to not think about how his condition has taken so many things from him.

My heart was on the floor. I was gutted.

“I will always tell you the truth,” his doctor added.

The appointment ended soon after, but the weight of that moment stayed with me. I could see him turning it over quietly, the way he processes most big things. A few days later, I checked in with him to see how he was feeling.

“I’m ok,” he offered.

That is usually his first response to questions about his feelings. I gently pressed, trying not to project what I thought he must be feeling after hearing from his doctor.

We landed on disappointed and resigned. Having the answer helped quell the uncertainty, even if the answer wasn’t what he wanted.

Moments like this remind me of something I live with every day: he faces losses most teenagers never even consider. They arrive quietly, in small conversations and clinical truths, and I know they won’t be the last. There will be more moments like this in his future, more things he has to let go of. But we will keep living our lives around what he can do, not just what he can’t.

And no matter what lies ahead, I’ll be right beside him.

Another Year I Didn’t Think I’d Get

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.

And for that, I am endlessly thankful.

In Broad Daylight

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.