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.

Wall Of Limitations

This summer, my son participated in a week-long baseball camp. We knew it would be physically demanding so we spoke with the coaches before we registered him to make sure that he could rest and leave early if he needed it. It’s a phone call we have made before and will likely make many times in the future that serves two purposes. First, it helps us make sure that our son will be safe. And second, it identifies any places not willing to make accommodations for people who need them, which is not a place we want to be.

My son’s nanny took him on the first day and the coaches welcomed him to the camp. He managed to stay for half the day but then took a three-hour nap when he got home. But he had fun and he made friends. The second day was much the same with a long nap after a shortened day.

By the third day, he didn’t want to go. He was noticeably tired but he managed to make it out the door. His nanny coaxed him on to the field and, after almost thirty minutes, one of the coaches managed to finally get my son to participate. He left early again that day.

On the last day of camp, we planned to let him stay all day because they were going to play a game. His nanny made sure he took frequent breaks and he made it through the day and finished the camp with a smile.

The end of the camp coincided with the Little League World Series. I watched the grueling tournament and wondered, given how the camp went, whether my son could do anything like that. By now, I don’t have any grand vision of him playing in the major leagues, but I do want him to continue to play something that gives him joy and that makes him feel like a part of a team.

It made me think that someday we’re going to run into a wall of limitations. We’ve faced small ones before, but we’ve managed to pass them mostly by watching our son climb over them. We’ve managed to keep our distance from larger walls by adjusting our path. We swapped hockey for baseball. We learned to work around his physical and endurance issues. But we haven’t been faced with consciously confronting the difference between possibility¬†and probability. Potential versus practical. Fantasy versus reality. We haven’t faced the wall that was once on the horizon but is now uncomfortably close.

And every day we are moving closer. It’s starting to block our view to the world behind it. I’m beginning to wonder what we will do when we reach it. Will it be too big and stop us in our tracks? Will it be too overwhelming and send us back the way we came? Or will we do what we have always done and follow our son as he finds a way to climb it, even though we know there will be an even bigger wall behind this one?