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When a child in our community dies, the world closes in around us. Telling our daughter that her ten-year-old friend died unexpectedly was awful. It’s hard enough to make sense of something like this as an adult. For a child, it’s incomprehensible.
When a child is lost to SUDEP all parents of children with epilepsy receive a jarring reminder that this can happen.
We are devastated for the family. It hits close to home as we direct some of the shock inward by recalling our own children’s worst seizures. We relive the panic. We hear the ambulance sirens and repeat the silent prayers to, “Just please let her be okay.”
SUDEP—(sudden unexpected death in epilepsy) is a fatal complication of epilepsy. It refers to the sudden death of a person with epilepsy, without warning, and where no toxicological or anatomical cause of death could be found. Like SIDs in infancy, it’s a menacing mystery.
My friend and fellow epilepsy mom calls SUDEP the “ugly little secret of epilepsy.” We’re aware of it, but we just don’t talk about it. It’s just too frightening.
Along with great sadness and disbelief, many of the parents in my circle of epilepsy families have reacted to this tragic loss with sadness, but also fear. Some of us are even sleeping with our kids who have seizures, watching over them just like we did when they were little.
Someone in my life suggested I might be over-reacting. “You know SUDEP is rare,” they told me, trying to alleviate my concern.
Rare. But I can never shake the terror of holding a limp child, blue lipped and unresponsive while waiting for an ambulance.
They also said I might be making this tragic loss too much about me. I’m not exactly sure what they meant but that, but I’ve decided that unless you’ve lived it, you can’t possibly know what this feels like.
They weren’t there to see my daughter resuscitated by paramedics. They don’t know that if I hadn’t randomly gone into her room during that Status Epilepticus seizure when I did, things might have ended in tragedy. They don’t know that without the newly acquired video monitor we had just set up in her room, I wouldn’t have seen her seizing and choking during a nap. It was the reason I was able to get to her in time.
We were lucky these episodes, though during sleep, were when my daughter was sleeping, but I was awake.
They don’t think about any of that. As the parents of a child with epilepsy, we think about it all the time.
They also don’t understand that what happened to Avery’s young friend was tragic, but also personal, because it could easily have been any one of us.
One of my daughter’s friends commented on a post I shared on Instagram about SUDEP. She said, “It’s scary but we can’t let it stop us from living. Life is too short for that.” Such wise words from a beautifully brave young woman living with epilepsy.
