Every year, my son has a birthday that I didn’t think I’d get.
Since the age of five, he’s never gone more than a day or two without a seizure. There were times when he wouldn’t go an hour without one. And there were times when he was in status, and he wouldn’t stop seizing at all.
The first few years were especially scary. We would spend weeks admitted to the neurology floor of the children’s hospital, watching as the medical teams fought to keep my son alive. I would wake up next to him in the middle of the night to find doctors conferring, trying to find the next medication or treatment to try. His therapists would come during the day to help his body relearn what it had forgotten how to do. Each birthday we celebrated during that time was a gift, even if the time between them was unbearably hard.
Even after he was stable, his future was uncertain. The medications that reduced his seizures didn’t control them completely. That’s when his doctor introduced us to SUDEP (Sudden Unexplained Death in Epilepsy), and the leading risk factor is the presence of uncontrolled, generalized tonic-clonic (GTC) seizures, especially if they occur at night.
If I didn’t sleep before, I certainly wasn’t sleeping after that conversation. We installed a camera in his room to monitor him while he slept. I woke with every sound, every movement—or when there was too much time with neither.
Even this morning, as I was writing this post, I heard my son have a seizure in his room. It was longer than usual, so I used the VNS magnet and then his rescue medication before the seizure stopped.
As he turns sixteen, that’s more than eleven years without sleep. Eleven years of worry. Eleven years of hoping for another year.
And for eleven years, I have been given another year. Each one feels like a small miracle.
The fear never really goes away, but neither does the gratitude. I still hold my breath with every seizure, but I also get to watch my son grow taller, tell jokes, and dream about what comes next.
Sixteen years. Eleven years of worry. But also eleven years of laughter, stubbornness, love, and life.
Every year is another year I didn’t think I’d get.
And for that, I am endlessly thankful.