Category: parenting

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.

Invisibility isn’t a superpower. It’s a symptom of a larger problem.

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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.

Happy Anniversary, Epilepsy

Four years ago this week, my son had his first seizure.

Four years.

Almost half his life.

He doesn’t remember the time before. Most days, neither do I. Our memories are of our new life that started the night his body contorted and stiffened on the floor of the arcade. It was the night that time stopped as we prayed that our son would come back to us and when I held his frozen body in a thunderstorm waiting for the ambulance to arrive.

Even though his second seizure wouldn’t be for nearly two months, the fear and uncertainty that the first one had caused lingered. It turned out that time was the quiet before the storm…that feeling you get when the clouds darken and the air changes and you know the storm is close. The air filled with the same electricity that would soon wreak havoc on my son’s developing brain.

And then it happened. The second seizure burst free just as my son sat in his seat onboard an airplane. Another thirty minutes and the plane would have been in the air but, thankfully, the crew got him safely off the plane and on his way to the children’s hospital. Within a few months, his seizures would be out of control and we’d be back in the same hospital learning firsthand what status epilepticus was.

It would take nearly two years before my son was stable. But even then, we were still adjusting medication, dealing with side effects and behavioral issues, and occasionally using his rescue medication. He was stable, but not living the life we had planned. But by then we were beginning to realize that we needed a new plan.

Four years in, we’re still adjusting that plan. There hasn’t been a day that has not been affected by epilepsy. He’s had countless seizures. He’s been on and off medications and suffered endless side effects. He’s had a barrage of blood draws, EEGs, and other testing and had a myriad of therapies trying to restore what epilepsy had taken away. He’s been isolated from his peers and falling more behind in a world that doesn’t wait for people who can’t keep up, or are different, or need help.

After four years, I thought we’d be further along. I hoped he would outgrow his seizures or we’d at least have them under control. I thought we would have figured it all out. I thought we’d be able to get back to normal. But, instead, we had to change our definition of “normal” and learn how to live life with different expectations.

In these four years, I’ve learned a lot of other things, too. I think I am a better man, husband, and father than I was before this started. And we’ve had so many wonderful experiences and met some amazing people on our journey. But I can’t bring myself to be grateful. I can’t allow myself to acknowledge the things that are good because I don’t want to reward the monster that continues to attack my son. Our life is what it is in spite of epilepsy, not because of it.

Four years is a long time. But I know we have many years to go. We didn’t ask for this, and we don’t want it. But it looks like we’re going to be together for a while.

So, Happy Anniversary, Epilepsy.

I didn’t get you anything.

Because I hate you.