Won’t you take this cup from me
Cause fear has stolen all my sleep
NEEDTOBREATHE, “Garden”
As with any chronic illness, epilepsy is a rollercoaster. Some days are relatively smooth and even look like things are on the rise. Then suddenly you’re holding on for dear life as the support below you drops away and you find yourself plummeting straight down toward earth. Seizures cannot be predicted. The saying in the epilepsy community is, “The only thing predictable about epilepsy is that it isn’t predictable.”
For example, Cody’s first three seizures were each several months apart. Since then, he has had seizures back-to-back, just seconds apart. Most recently, he went 51 weeks between seizures. We were planning a joint 1-year seizure-free celebration with some friends whose son’s last seizure was the day before Cody’s last seizure. Ten days before the anniversary, she and I got the “where, when, how” scheduled . . . two days later, Cody had a seizure. We celebrated anyway – 1 year for their son and only 1 seizure in a year for ours, something that had never happened in eight years of seizures.
Eight years of seizures . . .
I can tell you the exact day and time of Cody’s first seizure. It was the night of my 40th birthday. We celebrated with my family over supper and cake, then drove home. In the middle of the night at 2:00 a.m., in the middle of deep sleep, I heard Chuck saying, “I think Cody’s having a seizure!” He went to call 911 and I went to stand by Cody’s toddler bed – he was 2. I just stood there, not comprehending what was going on. I just stood there because how do you stop a seizure?
I just stood there.
Cody stopped seizing and I picked him up to take him to the bathroom. One of Chuck’s coworker’s sons had febrile seizures and that was the only thing I could think of that was happening to Cody. “He must have a fever,” so I took him to the bathroom to get a cool washcloth to wipe him down.
And I realized as I carried him that he wasn’t breathing.