Events occur in life that divide time into before and after. This was one of those.
Before this seizure, there was worry. After this seizure, there was fear. Real fear. Strong fear. The kind of fear that haunts your thoughts and jerks you awake.
My son and I saw the life leaving Rose. The term SUDEP had not been coined yet. Death by seizure was not widely talked about then. Folks still believed in tongue swallowing.
We know what we saw. I have been told that my panicked beating on the back may have served as haphazard CPR. I was aware of nothing but Rose in those long minutes.
I know I am sharing a nightmare with parents who have had their own, so I must be honest. The level of concern in our lives was raised that evening and has never returned to the previous level. We fight the fear every day. Especially me.
Yesterday, I drove Rose to run errands. My current PTSD and pandemic anxiety kept me in my car. I watch the world from a safe distance right now. Rose took longer than expected in both places. My anxiety level rose higher and higher, but I made myself stay in the car. If I went into the store, she would know that my fear for her was stronger than my fear for me. Rose would have been furious.
After this long, first non-febrile seizure we got rescue drugs. Once your child has had a status event, you need to request one of these. First it was a pill that dissolved in her cheek. Later it was a syringe of Diastat. This syringe is expensive and must not get too hot or too cold. I carried it in my big purse for almost twenty years. The drugs saved Rose at least a dozen times.
The Big One occurred in May 1997 and I am still unpacking its effects on our family. This caused a change in our dynamics. We still “circle our wagons” around Rose in times of trouble. We have not been able to protect her from all of life’s hardships, but we can be there for support.
There’s a fine line between being cautious and over-protective. We have crossed it many times. Do not stay on the “helicopter parent” side of that line all the time. Your child will end up weak and co-dependent. This epilepsy parenting is a marathon, not a sprint. You should be running the race with your child, not carrying them. I mean this. I know it is hard to do. You need to fight your fear, so your fragile child can get strong.
Seizure Mama/Flower Roberts