Epilepsy Means to Me

A post about what epilepsy means to a parent.

While Vivian’s epilepsy is controlled at the moment, it doesn’t mean that it always will be. So far we have been lucky to not see any more infantile spasms clusters or seizures, but we may not always be so lucky.

Epilepsy rarely stays the same in anyone.

Hoping that Fiona’s mum is getting some sleep tonight. I thank her for writing this.

Star In Her Eye

I’m usually late to parties, and last Thursday it was Epilepsy Awareness Day. So I’m arriving today. Here’s “what epilepsy mean to me,” as they say.

Epilepsy means that Fiona and this kit are never separated.

IMG_2433-0 Sealed, rectangular Tupperwear container with plastic syringe inside.

Epilepsy means this kit goes into the diaper bag, into my purse, wherever Fiona goes. Because inside the kit is the medicine to stop a seizure if it happens and if it goes on too long.

Epilepsy doesn’t mean that a person who is seizing can swallow his/her own tongue. I first learned this in a Cincinnati hospital after Fiona’s first seizure. That is one enduring myth, I thought. I was 33.

Epilepsy means that, when my husband and I went on a date the other night, and I found this Guide to Troubled Birds,

Book: Guide to Troubled Birds Book: Guide to Troubled Birds

 I thought…

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