An Urge for an Ordinary Day
Last updated: November 2023
Being the parent to a young adult (23 years old) is tricky. He wants independence, to be like his friends, to not be scared to leave his house for fear of having a seizure.
As his mom, I desperately want that freedom for him, and we are working hard to get there. Today, we are hoping his current medicine regime will stop break through seizures. But here is a glimpse into parenting a young adult with epilepsy.
An Ordinary Day
I suggest a walk over to the jetty looking out on the ocean to my two sons. The view is amazing, and we are all sluggish from laying on the beach.
We walk for a ways, then scramble up the rocks onto the jetty. They start to move ahead of me, looking back to make sure I'm ok. "Yes" I tell them, "Go ahead, it's fine, I'm enjoying the view".
My youngest scrambles way ahead, as he's done a million times before, his older brother trailing a bit further, a bit more cautiously, behind him.
Just a mom trying to keep her kid safe
I sit watching them, my heart in my throat with every step my youngest takes. My brain won't be quiet. What if he seizes near the edge, what if it's even for a second, and he misses his footing and falls into the ocean. All I can see is the danger in every step he takes, and I fight with everything I have, the urge to chase after him, to make him get off the rocks, to keep him safe.
We all deserve a sense of "normal"
But he needs an ordinary day. We all need an ordinary day. So I sit on the rocks, watching them climb, growing smaller in the distance. Tears pouring out behind my sunglasses, knowing they are too far away to see my fear. 5 minutes and a million minutes all pass in the same space.
How can the girl who lives so fearlessly be so scared? Cause I don't trust the wind, the rocks, the misfires in his brain. But we need an ordinary day.
For now, I will take what I can get
They reach the end of the jetty, take in the view and start to make their way back to me. I brush away my tears and wait for them to get closer to me. We all scramble down the rocks and I breathe a huge sigh of relief.
We come back and lay on our beach blanket, with the day continuing around us. We did it. We had an ordinary day. And that will have to be enough. For now.
Is increased screen time a seizure trigger for you?