I Feel Like I Can't Even Go To Sleep

A few weeks ago, we found out that my son has epilepsy. We didn't find this out in a way that allowed us to ease into the idea of adding new medications, understanding what a seizure looks like, and knowing what to do. We found out because he dropped to the floor while playing a video game and started convulsing.

I have worked in the medical profession for much of my adult life, so I have seen a lot. However, I had never seen someone have a seizure in person before. TV shows always depict the convulsing and the eyes rolling back. But what no one ever shows is the part where it seems like the person might choke to death.

The terror of seeing your child have a seizure, especially the first time, is overwhelming. Add in a thirty-second-plus period (which actually feels like an hour) where it feels ominous and helpless, and you just have to wait it out. I have to actually tell myself that this is part of the seizure and it will stop soon. Normal breathing will resume. The rescue medication in my medicine cabinet is a balm to the screaming panic in my body.

Over the weekend, unable to sleep, he came and jumped in bed with my husband and me. He tossed and turned, and I could tell he was getting stressed out. He almost got out of bed and went back to his room, but it woke me up enough to tell him to climb in between us, and I would scratch his back. Almost as soon as he settled, a seizure started.

I woke my husband, and we got him turned to his side and started a timer. Taking the panic out, knowing what to do, and knowing that he wasn't actually choking to death made this time easier. I was more prepared, and my husband was more prepared. Honestly, the fact that it happened in our bed was comforting. We were right there; we saw it start, and we did what we knew we were supposed to do.

After the first seizure, my daughter was also on high alert. We spent about a week checking every loud sound. She was just as terrified as we all were after witnessing her brother on the ground shaking. They may be siblings who drive each other crazy sometimes, but my daughter is a mother hen who feels strongly about her role as sister to her autistic brother. She can do or say what she wants with him, but if someone comes for her brother—she’s ready to kick some ass.

That is the essence of who we are as a family. We are silly and light-hearted. We are sarcastic, we tease, and nobody takes it personally (usually). I am a mama bear, and when someone messes with my kids, they will find out just how quickly a five-foot-nothing woman will verbally smack them down. But what really sucks is that you can’t verbally smack down a disease. If that were a thing, childhood cancer would have long ago run away, hidden, and never come back.

So there lies the issue with a child having seizures, or any disease. You, as a parent, have zero control. Losing control of your child’s safety is scary as hell. Last night, the fear turned into anxiety, and it felt like I shouldn’t go to sleep. Every noise, every movement, had me getting back out of bed to check on him. Also, I was trying not to be nonchalant about it because I don’t want to freak him out or drive him crazy with my incessant worrying.

So, here I am back to square one with my anxiety and stress. But I also know we'll get through this. We'll learn, we'll adapt, and we'll find our new normal. And eventually, maybe, I'll be able to sleep again.