The Different Kind of Worried You Feel When Your Child Has Epilepsy

My son Bunz had a seizure at school the other day. He was wide awake at the time. That’s a first because until that day, he’d only ever had seizures in his sleep. I’m not sure what this means. My husband says it’s probably a one-time thing, nothing to worry about. But in our experience with epilepsy, there’s no such thing as a one-time thing.

I’m worried.

I shouldn’t worry. My friends tell me this, and my husband tells me this. Science tells me this. If I had a psychologist, he might tell me this. But Bunz’ new neurologist doesn’t say not to worry. She doesn’t say to worry, either – it’s just that she’s more of a facts and strategy kind of woman. Always thinking about the next step. She told me the other day that even when she’s not working, she’s always thinking. Is thinking the same as worrying?

Other relevant stories:
• Can a Woman with Epilepsy Have a Baby
• Medications for Epilepsy
• Things You Can’t Do with Epilepsy

I want to be a facts and strategy kind of woman, too. But my heart keeps getting in the way.

When my husband tells me not to worry, I tell him I’m just being prepared. Because the best thing to do if you’re worried about something is to prepare for it, right? And then there’s no sense in worrying because you’ve already done everything you can.

Like that time I bought a hammer to keep in the glove compartment of my car. I wasn’t too worried about driving over bridges, but one day this woman’s car went off a bridge near our house and, miraculously, she survived. All of a sudden it seemed like a very real possibility that my car, too, could go flying off a bridge for no good reason. And if that did happen, I’d better have a hammer so I could smash my car windows and swim to the shore, just like her. (I doubt I’d notice my tube top falling down, though. I’d just yell at everyone to “Call my family! Don’t just stand there!”)

But you know, there’s no sense worrying about these things because you’ll never get them right anyway. Chances are, you’re going to worry about the wrong thing. And while you’re busy doing that, something else will sneak up and smack you in the face. I ended up getting rid of that hammer because I started to worry about what might happen if the airbags deployed and a hammer came flying out of the glove compartment into someone’s face. Of the two possibilities, the airbag one seemed most likely.

Despite my being prepared, I’m always surprised by bad news. There’s always that split second of confusion before it sinks in. “What?”

The text message saying that Bunz had a seizure at school. “What?”

Death, disease, lost homes, lost children, terrible things happening to people we love. “What?”

I think it’s short for, “This is a joke, right?” Or “Man, I’ve been worrying so much about all these other things that this particular thing wasn’t even on my radar.” Or “How is it possible that only a second has passed but our lives are now irreversibly changed?”

When it comes to epilepsy, the worrisome part is not just that a seizure will start but that the seizure won’t end. It’s different than driving off a bridge. With epilepsy, it’s more of a waiting game.

The air is tense with waiting these days. I’m used to waiting at night, watching Bunz sleep in the video monitor. We’ve done this for so many years that we no longer feel anxious or agitated at night. Just watchful and alert. Ready to spring to action at the first sign of a seizure, even when we’re bone tired from the day. It’s our normal.

But lately the days are like nights, and this doesn’t feel normal at all. All the time, waiting for a seizure to start. And despite this constant waiting, it always happens when we least expect it.

This morning we were sitting at the breakfast table, eating Kix and listening to Bunz’ brother go on about LEGO Chima Lloyd. I saw Bunz grin as he picked up a LEGO Spiderman figure and opened his mouth to speak.

But instead of words, visible waves of flesh rippled across his throat and spread to his chin, pulsating through his lips and cheeks. A flash of surprise entered his eyes just before his pupils, too, got swept up in the terrible rhythm. I paused for a second (“What?”), then gathered him up in my arms. Supported his neck, turned his head to the side.

When he came out of it, he cried and begged me to take the seizures away. He got angry and tried to rip them out of his head, pulling out a few hairs instead. After the anger passed, he just seemed tired.

I hate to say it, but damn.

I’m worried.

Follow this journey on Team Bunz.