Back On The Field

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.

Stepping Up To The Plate

There is a screen saver on our television that lets us use our own photos. One of the pictures we used that has come up in rotation is from one of my son’s baseball games. He’s standing at the plate, adjusting his helmet with his left hand while his bat hangs down from his right.

It feels like that picture was taken in another life so long ago. But it’s only been a few years. “Only,” as if that is an insignificant amount of time.

He said the other day that he misses baseball. I miss him having baseball. I miss him playing a game that he loves, surrounded by other kids being kids. I miss the look of his “game face” or the excitement and expression on his face after he got a hit. I miss his laugh as he and the other kids ran around the bases at the end of the game and created a pile-up as they slid into home plate. I miss retelling the best moments from the game in the car on the way home.

We had signed him up for this season, hoping to introduce a bit of normalcy back into his life. But because of an abundance of caution for his health and other changes on our horizon, we decided to pull him.

I still haven’t told him.

Seeing that picture on the screen is my reminder, not just to have the hard conversation but also about how isolated he is. Baseball was one of the only places where he showed up as an equal. That feeling and those bonds that he made on the field were the same as the other kids. But the other kids created bonds in school, as well, that my son missed out on because of his long absences over the years.

He plays Fortnite with a few of his former classmates, but I can hear the conversations sometimes, and, with a few exceptions, he is treated as an outsider. Many of the kids who developed those classroom bonds still go to school together or play sports together. They have the real-world bond that carried through to the online world. It’s hard to compete with that when the only interactions that you have are virtual ones.

It’s the same reason my son is struggling with a virtual school. In addition to the difficulty many of us have to stare at a screen all day and the mind-numbing burden of an all-day video call, he’s getting zero in-person social interactions. He’s not making friends, even though he receives online social skill classes because it’s hard to build those relationships and connections in a meaningful way when the person on the other end is only a face on a screen or, worse, one of the dozens of faces on a screen.

But even though the other kids have stronger bonds and sometimes exclude him, he still sends that invite to play online with his friends. Despite feeling like an outsider and that sting that comes from not getting picked, I’ve seen my son be so kind and generous and play the game modes that his friends want to play. I’ve also seen him put his own needs out there and ask to play the games he wants to play.

He still wakes up every school day and sits in front of that screen, and he tries to follow along. He fights through his exhaustion and attention issues to participate in the class as best as possible. In both cases, despite the challenges, he shows up with an open heart and a willingness to learn, be included and connect. Like the picture on our television, every day, he steps up to the plate.

And I couldn’t be more proud.

No Joy In Mudville

Spring is here, and in our house, that means baseball. My son loves to play baseball. I always thought we would be a hockey family, but playing hockey wasn’t in the cards for him. The nature and flow of baseball, however, made it the perfect game for where my son is physically and cognitively.

We’ve been lucky in the last few years with coaches, too. They let him play. They encourage him. They teach him. They make him feel like a part of the team. And they keep the game fun.

I, on the other hand, feel like I’m doing everything that I can to suck the joy out of this game that he loves.

One day last week, I took him to practice. His practices are in the evening, which makes it harder for him to concentrate, especially after a long day and school. That day, he also had a nap shortened by a seizure, and he’s been having more seizures at night. It was not ideal, but it also wasn’t new.

He usually pulls it together for the hour, but he was a little off that night. He was having a hard time listening, and I could see that he was having a hard time physically. His muscle memory was failing him. Actions and movements that were generally automatic for him were labored or forgotten.

I got extremely frustrated. Not really at him, but for him. I was mad at epilepsy. I was jealous of the other kids and parents who just show up and don’t have these struggles. But all that frustration comes out channeled at my son. “I’m sorry,” he’d say, as I huffed as I turned to retrieve another wildly thrown ball. “I’m sorry,” he’d say, as I asked him to stop diving into the muddy ground. “I’m sorry,” he’d say, as I explained to him why a ball got passed him.

During the scrimmage, the coaches were figuring out who should pitch next and my son went up and said that he would. At first, the coaches were reluctant, but then one challenged him and said, “If you can throw me three strikes, you can pitch.” My son stepped to the mound and threw only three pitches to the coach. All strikes.

When he faced his first batter, I could see my son go into his head and play as he does in his room. He pretended that the catcher is signaling pitches and shook them off. He tossed the ball in the air like they do in the movies. And then he threw a pitch nowhere near the plate.

From the sideline, I yelled at him, but he wasn’t listening. In between batters, I walked up to him and tried to help him focus. “I’m sorry,” he said. He managed to get some pitches over the plate but walked the first two batters. The third batter crushed the ball but it was caught and thrown back to first base for a double play. Two outs.

They let my son continue to pitch. He was so excited, in spite of my yelling. In spite of my frustration. He walked one more batter but then struck out the next batter to end the inning.

That night, I was sad and embarrassed. I made a big deal out of how well my son did, but inside I’m feeling the shame of blanketing practice with the sound of my voice yelling at my son. But it didn’t feel like an isolated incident. I think it helped explain why my son apologizes so much.

Before he drifts off to sleep, I tell my son that I can’t imagine baseball is very fun for him with me yelling at him all the time. I told him I’d do better. And I will. My son finds joy in a lot of things, but baseball holds a special place in his heart. I would hate to take that away from him.