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.
I can remember what happened after that but I don’t really want to write about it. Suffice it to say, the sheriff’s deputy showed up before the ambulance, and he pulled oxygen from his trunk. Cody was shallowly breathing at that point but was still gray. The oxygen pinked him up but, other than that, you couldn’t tell he was breathing. The ambulance came; I rode with Cody. Chuck drove our car, visions of a toddler-sized coffin in his head as he drove at 2:15 a.m. to the children’s hospital 20 minutes away.
Cody had a fever and the ER doctor calmly stated that Cody had had a febrile seizure. “They’re very common,” he said, almost glibly, as if it was kind of amusing to him that we had brought Cody in for something so insignificant.
It is not common for me to see my son seize then stop breathing.
And as it turns out, it wasn’t likely a febrile seizure but an epileptic seizure. I still feel guilt about not getting that properly diagnosed until Cody had had two more seizures over the next 14 months.
About a year after Cody was diagnosed, and continued to have seizures despite medication, my neighbor asked how he was doing, not realizing that he had recently had another seizure. Trying to offer me hope, she told me about a relative’s son who had epilepsy. He was diagnosed at age 4, was now 11, and had just gone 2 years without a seizure (a magic number in epilepsy because, in theory, for some people, if you can go 2 years seizure free, the brain will have forgotten how to have a seizure and you can start reducing meds). She shared about him being seizure free for two years and getting off meds.
But I only heard her talk about his epilepsy from age 4 to 11. I only concentrated on “seven years.” Seven years?!
I looked at the ground and said, not really to her but more to myself, “I can’t do this for 7 years.”
October 23rd is Cody’s 7th anniversary of the actual epilepsy diagnosis.
I have done this for 7 years.
I wish I only had had to do this for 7 years.
I wish I only had had to do 7 years of this rollercoaster with its ups and downs that are completely unpredictable.
And heartbreaking.
And that have given me a calling in life I never would have asked for but which I will rise up each morning and walk in for another 7 years…and another 7…and another…
“I am only one, but I am one. I cannot do everything, but I can do something. And because I cannot do everything, I will not refuse to do the something that I can do.”
Edward Everett Hale
Leave a Reply