How epilepsy affected Elisabeth

Katherine, Elisabeth's younger sister, loves dogs.  Obsesses about dogs.  By obsess, I mean she talks about dogs, watches informational shows about dogs, googles dogs, plays dog games, and pretends to be a dog.

She was princess when she was three.  When she was four, she became a dog.  She has been a dog ever since.  Her favorite book in the world, is, you guessed it, a book about dogs.  It has pictures and facts about more dog breeds than I knew existed.

One day she asked me "Mommy, do you think I'm part dog??  I love dogs, and I understand dogs, and I can see Elisabeth's seizures, like a service dog."

She was right.  The other thing in the world she loves most, is her older sister.  She follows her around, dogs in tow, morning, noon, and night.  And, she spots seizures.  Before I do. "mom, Elisabeth is having a seizure!!"  She is invariably right.

We all watch for them.  Elisabeth got feelings before some seizures.  She said it was in her heart, and made her feel like she wanted to hide.  The epilepsy community calls those auras.  6 or 7 times out of ten, the aura would become a seizure.  The other times, she'd run to a small, confined space.

I warned her teenage brothers, "If you ever see her running toward the stairs, or toward the street, grab her."

She never did that.  I told her to spend the day downstairs.  If she happened to feel funny while upstairs, SIT DOWN.  That happened once.  She did sit down.  Phew.

In the parking lot, she had to hold the cart, and I kept my hand over hers.  She thought that was so silly.  I knew what could happen if she started running.

She had to have her medication every morning and every night.  On time. Without fail.

She couldn't swim without extremely vigilant and close supervision.  Which was hard on her, because she could swim like a fish.

You see, I'm a numbers person.  I read statistics.  I research.  I look for healing methods and natural treatments.  While there are unbelievable numbers of treatments for autism, I couldn't seem to find anything for seizures.  At least, that seemed worth trying.  And statistics for epilepsy are not good.

2 children out of 100 with epilepsy will die each year from seizure-related accidents.  Children with epilepsy can die in their sleep.  Epilepsy is DANGEROUS.

So, I didn't let her spend the night with friends.  She had to have her sleep, so even sleepovers at our house were very rare.  She took all the bad news pretty well.  "Oh well, at least I can play in the sprinkler!"  "maybe we could have a playdate instead!"  "OK, mom, I"ll stay downstairs."  Sweetheart.

So, when the trileptil stopped working, and Katherine announced to me "MOM!!  Elisabeth is closed up in the closet!!   she's having a seizure!!!",  I was heartbroken when Elisabeth started crying, and asking me,

"WHY MOMMY??!!  WHY AM I THE ONE WHO HAS EPILEPSY??!!"