Epilepsy Dad

Livin’ La Vida Normal

Tonight we did something that we haven’t done in a while. We went out with friends.

We’ve been in this city for eight months. Two of them we spent in the hospital, most of them we’ve spent trying to find the balance between giving our son a normal life while constantly worrying about his seizures and his epilepsy. He hasn’t been able to return to school for more than a few hours a few times a week, if that, between his fatigue, his therapies, and his behavior. The poor kid is lonely. His only playmates are his parents and the nurses, therapists, and doctors at the children’s hospital. Even tonight, strolling along the street, we ran in to one of the nurses from the hospital who recognized us and came over to say hello. And I’m grateful for that. I’m grateful that they care so much, I’m grateful that he’s left an impression on them. But for once, I’d like him to run in to a classmate, or a friend.

Tonight, though, we had a bit of normal. The one day this week our son went to school, he ran in to his one friend that he’s had a playdate with since we moved here, and his friend’s parents invited us to go with them to the Night Market, a street food festival in Philadelphia.

The streets were packed with people, but our son and his friend stayed together, and played, and we talked and had a wonderful time with his parents. We walked through the mob, inspecting the trucks and grabbing a beverage and some dinner. Our son, of course, couldn’t have anything because of the ketogenic diet, but he didn’t care. He was out, running in the streets, right alongside his friend, because that’s what normal kids do, and tonight he was a normal kid. And tonight, we were normal parents, doing what normal parents do, too.

Some Days…

Some days, the ball hits you in the face.

Some days, you hit a home run.

Some days, I feel like all I post are sad, depressing stories. And maybe I do. Our lives are full of a lot of that now. But we’ve gone from a lot of bad days, to fewer bad days as a whole, and to just bad parts of days. We’ve even had our first two good days (defined as a) no seizures b) not having to hold him down and c) no screaming) since February.

Even on the days with bad stuff, we’ve had some good stuff, too. My son has met some amazing people at the children’s hospital, and those people care for him very much, and make him feel special when they see him. He’s even participated in a fashion show and a YouTube video while he was there.

In the last few weeks, he’s gotten off multiple medicines and transitioned to a very difficult diet that has helped with his seizures. He’s fought through 5 seizures during a teeball game and multiple attempts to bring him home only to get three hits and score twice. He’s met a football player, a professional ultimate frisbee team (that’s a thing), and super heroes. He’s shown himself to be stronger and braver than I could even imagine.

Some days, life seems hard, and hopeless, and unfair.

Some days, there are specks of light poking through the darkness.

And we’re grateful for each and every one of them.

A Sound To Break The Silence

For the past eight nights, our house has been silent. Our son has gone to bed and woken up without a seizure, without a sound. For the last few months, he has a string of seizures in the early morning, echoing their call throughout the house. But for just over a week, shortly after starting the ketogenic diet, his seizures had stopped, and I had just begun to forget that sound. I had just begun to stop expecting that sound.

But then, a day after he moved back in to his own bedroom, a sound carried up the stairs and down the hall. At first, I thought it was my wife singing in the bedroom, or the call of the fans rumbling through the hockey game on the television. But after my wife shut the door, and after I muted the television, the sound once again filled the room. Down in his room, our son was having more seizures.

epilepsy seizure

I got ready for bed and headed down to his room. Our monitors are still not here, and as much as our bodies resent the lack of sleep that came with having him staying in our bed, I wasn’t ready to trust that his seizures were temporary and that they wouldn’t cluster. So I found a space in the corner of his twin bed, and I laid with my son until he fell asleep. I listened as he had another handful of seizures, and another few in the early morning.

Although we are still very much struggling with some lingering issues during the day, I was eager to return to a quiet house at night and to a restful sleep. I was ready to assume that the noise I heard at night was my wife watching some terrible show on CBS or a drunken neighbor stumbling home after a night out. But for now, I must still keep that part of my brain active that can pick up every sound and distinguish Madam Secretary from a myoclonic seizure, from knowing which is damaging a brain in my house and which is just a seizure.

There are days like today when I wonder if I will ever sleep soundly again. I wonder whether I will over not worry that every sound I hear is my son having a seizure and whether I need to rush down to his room to make sure he has recovered. Living on the edge, all day and all night long, is taking a toll.

There is so much uncertainty, so much to react to, so much to be cautious about. But I am hopeful for the day when the worst thing that I will hear at night is another show on CBS.