A few weeks ago, we had one of my son’s friends from his new school and his family over for dinner.
My son goes to a school for unique learners. He started there last year, and we uprooted from the city to move closer to the school. It was a big risk at the time, but it paid off.
It’s the first time we felt like he was in a place that understood him and was putting in the work to teach him. It’s the first time since our epilepsy journey started that he has been able to attend a full school day. My son is happy, learning, and surrounded by kids who are just like him; each one of those students has unique challenges and reasons for being there.
My son and his friend often FaceTime after school and play Minecraft. I’ll hear them talking and laughing from the basement, and I’ll exchange greetings with his friend when he hears me checking in. When his friend was out of school for a few days, my son would check in with him to see how he was doing. When his friend came over for dinner, the first thing he said when he got out of the car was that he needed to check on my son to make sure he was okay because my son had a rare daytime seizure the previous day.
The boys played for hours. They played video games and had Nerf battles in the basement. We heard the same joking and laughing in person that we did when they were chatting on FaceTime. It was a wonderful sound to hear in person.
While the boys played in the basement, the adults stayed upstairs and talked, mixing time between crafting and food preparation. We had a lot in common. Both families were dealing with a severe medical condition, as well as the complexities that come with it. Both boys struggled in school, and both families struggled to find a place that would work for them. There were doctors’ appointments and extended absences from school that made it hard for them to build and maintain friendships. But both families found a place where we felt the boys could learn and grow and where they found each other and other friends just like them. Both families also have one more year before we go back to the negotiating table in order to continue at the school that has given our kids a chance to be seen and to learn.
Listening to them share their story also made me furious. Not just because families of children with special needs shouldn’t have to fight so hard or be abused by the system, but also because the way their family was treated was amplified because of their race. The things they were told about their son were shameful and terrible, even more so because the comments came from people who called themselves educators.
This is the reality for kids who don’t fit into the box. The system, every system, is designed for the majority. It’s more efficient when all the pieces look the same and can be treated the same way. When an “other” shows up, it slows down the machine. The system will try to make the “other” confirm if it can or discard it in order to return to “normal.”
In some cases, when the “other” proves resistant to being discarded and fights back, the system makes conditions intolerable until the “other” has no choice but to leave. We’ve experienced this ourselves, and we’ve seen it play out too many times with the people around us, especially those on a similar path. It plays out the same way in the bureaucracy of the local school system as it does on the national stage.
Navigating this world is hard and exhausting. It often feels lonely and isolating. It’s been a while since we talked to someone who understood our experience that deeply. It was cathartic to look across the table and see someone who knew what it was like. As terrible as the experiences have been, it was comforting not to feel alone.
Playing in the basement, it was also apparent that the boys didn’t feel alone, either.
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.
I thought we were going to be a hockey family. I grew up watching the Hartford Whalers and would pretend to play hockey on the frozen ponds when I was a child. When I moved back to Florida after my military service, the Whalers were no more, so I latched on to the Tampa Bay Lightning and started taking hockey classes at a nearby rink. When I moved to Colorado, I joined a recreational team and played for years until the late nights became too much, and I settled for playing the occasional drop-in game.
My son and I started playing floor hockey as soon as he could walk. He was on the ice taking skating lessons when he was two, and by the time he was four, he started hockey clinics. When we would go to a hockey game, my son would make me keep my phone handy in case the Colorado Avalanche needed him. It was awesome.
Around that time, we moved to Philadelphia. By then, my son had had his first seizure, but it was only one, so we still looked for ice rinks in the area for him to continue skating. But, by that winter, things had taken a turn for the worse, and he would wind up being in and out of the hospital for the next few months.
By the spring, we were out of the hospital, but his seizures were still not under control. We were in a new city with no friends, no family, and the only support we had was at the hospital. We had just spent months isolated in the hospital and wanted to give him something to do. Skating wasn’t an option, at least until he became more stable, but we found a tee-ball league nearby and signed him up.
That first season was rough. There were wonderful moments watching him play with the other kids as he learned to hit and throw and play the game. But there were constant reminders that we hadn’t yet figured out what was wrong. We would watch as my son stood on third base and slumped over because of a seizure, only to pop back up and try to get back into the game. Sometimes he could; other times, we’d rest and hold him on the sideline as his tiny body recovered, watching the other kids continue to play. It was heartbreaking. But he loved being on the field, so we made it work.
Eventually, and after he stabilized a bit more, we signed him up for some skating lessons and a hockey clinic. They taxed his body and brain, and we had at least one seizure on the ice, but he was happy. Again, though, his seizures and the side effects of his medication took over, and skating was too much for him. For a while, we tried working on hockey skills on a concrete rink, but even that was too much. We still loved going to games and playing on the tennis courts in the park. My son still dreamed of a career in the NHL, but skating and being on the ice took too much out of him to be able to do it consistently.
Baseball, though, was different. Each spring, we would sign up, even though we didn’t know how much our son would be able to handle. Each spring, I would fill out the signup forms and list his condition and make notes to warn his coaches about his issues with stamina and attention. Each season, my son would show up on the field and work hard to be a part of the team.
Through the years, we were lucky with the teams he was on and especially the coaches. The experience the coaches created for him was exactly what he needed, and it gave him a bit of normalcy during a very unstable time. And the coaches were good people, too. One year, his coaches attended our local Epilepsy Foundation gala, donating their time and money to a cause so important to our son and family.
When the pandemic hit, we missed those moments. When the weather permitted, we would go to a field as a family and play. As fun as that was, it wasn’t the same. Just as the world was beginning to open up and we were going to register for the upcoming season, we uprooted and moved out of the city and missed the registration for our new community, and missed out on another season.
This spring, though, we signed him up as soon as registration opened. Again, I filled out the forms and felt nervous filling out the “Medical Conditions” section. I was worried that we had found a bubble of support in our previous league where the coaches knew my son and that this new league wouldn’t be as positive. He’d be surrounded by entitled suburban kids and parents who have known each other for years. I was worried he wouldn’t fit it because it’s easier to do when everyone is new, but here he would be the only new kid coming in, and it had been years since the last time he played. I was worried that this experience would take away something that he loved to do.
I suppose it could have gone that way. But shortly before the season started, I receive this message from his coach:
Immediately, I felt better. That simple gesture lifted the worry and fear I had been carrying from the time I signed him up. The conversation that followed was sincere and kind and set my son up to have a positive experience on the team. We continued to communicate as we figured out where my son was physically and what he was capable of (which turned out, as always, to be much more than I assume he is).
Even though many of the other kids had been playing together for years, my son felt like a part of the team. The players celebrated hits, and solid fielding plays. They cheered for each other and got to know each other…Fortnite was a popular topic and something that my son had in common. A few kids from our neighborhood were on different teams, so my son also developed connections across the league. I couldn’t help but smile as I saw the kids chat and mingle during batting practice before a game, like professional baseball players getting ready to hit the field.
A highlight for me was during a day of celebration that the league puts together for the kids that raises money to support the organization. One of the events was a Home Run Derby for the 12-year-olds who would be “graduating” from their division. Only a few kids could hit the ball over the fence, but there was a point system for hitting deep balls that allowed everyone to participate.
My son was excited to participate, always believing he could hit a “dinger.” Nervously, I signed up to pitch to him during the event. Selfishly, I thought it would be a good father/son moment. But, even though I’ve been pitching to him since he first picked up a bat, I wanted to ensure that he was set up for success. When I asked him what he preferred, he said that he wanted me to pitch, so I practiced for days ahead of the event.
When I was out there on the mound, it wasn’t about whether or not my son hit any home runs (he didn’t) or how far he hit the ball (very, very far). It was watching him step up to the plate and do something brave. It was watching him take that deep breath, set himself up, and swing the bat. It was watching the smile on his face or the way he holds the pose at the end of his swing when he makes solid contact. It was hearing the other players in the dugout cheering for him when he sent a ball to the outfield or to try to reassure him when he had a string of infield hits. It was, after his time ended, walking up to him and telling him how proud of him I was and seeing how proud of himself he was.
The season’s final game was a “Graduation Game,” where they put all the 12-year-olds on teams one last time. It felt like an All Star Game where all the kids who had gotten to know each other over the season could go out and play one last time. After the game, each player received a plaque commemorating the season. They called up each player one by one while the others cheered. My heart swelled when it was my son’s turn, and I hid behind my phone to not embarrass him with my huge smile and watering eyes.
I am so grateful that my son has found something that brings him joy. There were times when I only focused on the loss of hockey…the idea that something he loved was taken away from him by his condition. There were times watching him have seizures on the field or struggle with his stamina and attention that I worried that he wouldn’t be able to find anything else. There were times when my overprotective, helicopter-parent nature and the terrifying experiences we’ve had with epilepsy have caused me to focus on the things he shouldn’t or can’t do.
But going through these experiences and watching my son continue to surprise me with what he can do…it’s humbling and wonderful and inspiring. It has caused me to move from a place of fear to a place of hope and gratitude. It has caused me to stop worrying as much about creating a perfect experience and to appreciate and enjoy the experiences as they come more fully. Every day my son teaches me something just by being himself. Every day, I feel like the luckiest dad in the universe.