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?

Invisible In Plain Sight

I stepped on to the street on my way to work. As I joined the flow of foot traffic, I saw a young man walking quickly ahead of me. I say “walking”, but he was bouncing more than he was walking. I didn’t see any of the earphones that I and most of my fellow pedestrians were wearing, but he was moving as if he had a soundtrack playing in his head that lightened his steps.

I noticed him because he was so different from everyone else on the street. He was a tall, young African American teen wearing a bright blue t-shirt surrounded by an army of mostly white business people dressed in muted black, brown, or blue. He head was up as he looked at the world around him while that world was looking down at their feet or at their phones.

When he stopped at a crosswalk, I got close enough to see that he would sometimes raise his hands and sign to no one in particular. It was as if he was signing the lyrics to the song in his head. Like when the chorus of a really good song comes on and you find yourself singing along, even if only in your head. From half a block away, this young man looked like joy personified walking up the street.

The light turned green before I could catch up to him. He danced through the intersection and on his way. As he did, I saw that he would occasionally wave to people passing in the opposite direction. Even from my distance, I could see a big smile on his face. But no one that he waved to reacted. They kept their head down. They looked at their phones. They looked the other way.

Maybe they didn’t see him. Maybe they were busy. Maybe they were really interested in whatever was on their screen. Maybe they were scared. Or maybe they just couldn’t be bothered. We live in a big city and I see people ignoring the world around them and everyone in it all the time.

I thought that maybe the young man had a disability because he was signing. Or maybe he was just different than, in color and age and general attitude, the other people on the street. But watching how the young man was being ignored made me think of my son.

Epilepsy is often called an “invisible” condition because it lacks physical markers, but there can be signs. We’ve had more than a few people ask us politely “Is there something wrong with him?” after they spend time with our son. He’s noticeably different in a self-centered world that doesn’t seem to have a place for people that are different. We talk about diversity and inclusion but we look the other way when it is our turn to act…when it is our turn to accept someone who is different from us.

I watched the world look away from that young man on the street. I saw the world unwilling to acknowledge another human being. I don’t want that for my son but I don’t know what to do about it. I wish I could change the world. I wish I could make it more accepting, more forgiving, more tolerant, more open, more aware. But we’re heading in the wrong direction. I fear that the only thing that I can do is prepare my son for the road ahead.

But then I turned my attention back to the young man. I could see, as he waved to the next person, that he was smiling. Even with the world ignoring him, he was walking with a bounce in his step and smiling. He would wave at another person. And then another. And he would keep smiling. I watched him not slow down, not shy away, and keep moving forward. I thought of my son then, too, because he has that same persistence, the same drive to bring joy to the world. And for a brief moment, I felt hope.

I never caught up to him, but I wish I could tell that young man that he brightened at least one person’s morning that day.

It Doesn’t Get Easier

It was pitch black in the cabin as I laid in the bed next to my son. I was asleep but found myself instantly awake, alert and staring up towards the ceiling the ceiling. There was no movement and no sound, but I knew what was coming. The reason that I was awake was that my son started to have a seizure. That initial moment when my son’s body tightened was enough to pull me from my sleep. What came next was the rhythmic tensing of his muscles and the accompanying moaning as the air was expelled from his lungs and crossed his vocal chords.

I turned to him the same way I always do and told him he was going to be ok. I rubbed his back and head until the seizure passed. Then I rearranged his body that had shifted during the seizure so that his head rested on the pillow so that he could return to sleep.

Some nights, these seizures seem so routine that I can easily fall back to sleep, too. I switch on my autopilot and replay the same actions to comfort him and reposition him in bed. Once he is sleeping, my autopilot guides me safely back to my own dreams.

The night in the cabin was not one of those nights. Instead, I laid in bed next to my son and felt a rush of sadness wash over me. In the four years that he has been having them, I have seen hundreds of seizures. Including subclinicals, he’s had thousands. Seizures and epilepsy are intertwined with every decision we make. We’ve been living with them so long that I thought it would get easier to see them. But it hasn’t. Each seizure brings me back to that first one. Those feelings of helplessness. They’re still there.

During the day, it’s not seizures. It’s his struggling to find words. It’s his inability to remember what he did the day before. It’s him guessing at the right thing to say or do because his brain won’t make that connection for him. It’s him constantly saying sorry because his brain lets him down.

It’s hard to not watch my son struggle and feel sad. As he stumbles over words to find the one he wants, it tears me up inside. I want to help him. I want to make it easier. I want to say the word for him so that he doesn’t struggle. But I know that he needs to find it himself. He needs to practice. So I smile and wait for him to find that word and try not to let my face betray the emotions I feel inside.

Things are supposed to get easier the more you do them. Things are supposed to get easier the more you are exposed to them. We’re four years in but, while we have grown and are better capable of handling the mechanical motions of dealing with seizures, it still breaks my heart.

Every day we are faced with the reality of what epilepsy is taking from my son. Every day, we see seizures and the physical, cognitive, and emotional toll that epilepsy is taking on him. And every day ends knowing that we’re going to go through it again the next day.

It doesn’t get easier. Not really.