I Don’t Have The Answers

Every day, I wake up, head to the computer, and write about my life as the father of an amazing child who has epilepsy. I’ve been doing it for more than three years. But I don’t feel like I have any more answers now than I did when I started.

When I write, it’s from the perspective of a father trying to work out his thoughts and emotions on the page. I am not an expert. Wisdom comes from hindsight but we’re still in the thick of it. And every day I realize more and more of how much I don’t know.

I don’t know how to minimize his pharmaceutical side effects. I don’t know how long he’ll be on the ketogenic diet. I don’t know whether there is something out there we haven’t tried. I don’t know what new medicine or technology is on the horizon that will help. I don’t know how to prepare him for the world with epilepsy. I don’t know what to do to get my son to stop seizing. I don’t know if he ever will.

An expert would have answers. An expert would know what to do. An expert would speak from the perspective of someone who has been through it. They know how the story ends or how the tension resolves. I don’t have any of those things.

But here is what I do know. I know that I love my son more than anything. I know my wife and I are doing everything we can to keep him whole and to give him the best life that we can. I know that I need to be the best man and father for him. I know we need to take each moment as it comes and make the best choice we can with the information that we have. I know we have this moment right now, and I know that nothing else is guaranteed.

Safe And Sound

It was another rough night. My son had a seizure shortly after going to bed and at least three the next morning. Fortunately, he was sleeping in our bed. It’s easier to catch the seizures and take care of him when he is with us.

Lately, he started doing this thing where, after he has a seizure, he’ll sit up and try to climb out of bed. He’s not awake, it’s more of an electrical impulse that triggers the circuits in his brain that signal him to move. We comfort him during the seizure and then perform early morning Aikido and redirect his impulse to move in the direction of his pillow. Within a few seconds, he is back asleep.

I went through the process for two of his seizures that morning. Comfort, Aikido, sleep. After the last one, I laid in bed with my eyes open and stared at the ceiling. My mind drifted to the question that I still can’t face.

What would happen if we weren’t there? Who would be there to comfort him? Who would be there to keep him safe?

The idea of him doing this alone seems impossible. The idea of him never being able to be on his own is heartbreaking. The thought that I will someday not be here to take care of him, to keep him safe, and to comfort him is what keeps me awake.

The early morning mind is cruel. It is also calculating. It takes advantage of my incoherence to pose unanswerable questions when my defenses are down. It plants unanswerable questions and then sits back to watch the show.

The two solutions I usually come up with are curing epilepsy or becoming immortal. One is just as likely as the next but neither is likely be to solved in my lifetime. And so I am left with the fear of the future. Not for my sake, but for his. Because I was supposed to be the one that took care of him, that showed him how to be a good man and sent him into the world to make his own way.

But I don’t know how to do that when I watch his body seize over and over. The more seizures he has, the more impossible it seems that he’ll be able to make his own way. I’m fighting back the inevitable reality that no matter what I do, I may fail.

I hope I’m wrong.

But even if I’m not, I’ll never stop fighting.

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.