Tuesday, March 26, 2013

In honor of Global Epilepsy Awareness Day

Living with epilepsy, a mother's view.

Epilepsy is:

  • Hesitating to let your child go out to play, for fear of a head injury either causing or sustained by a seizure.
  • Waking up in the middle of the night to check on your child, multiple times a night, because her seizures often occur when she's asleep.
  • Always having an inkling of fear when she's at school, wondering if the teachers and nurses would actually do the correct thing in the event of a seizure, or if they'd end up injuring her instead.
  • Having to say "No" to sleepovers, including summer camp and birthdays of friends due to needing to send meds, and fear of embarrassment on her part because during seizures she wets the bed. 
  • Having to say "No" to sleepovers hosted here, due to fear of embarrassment on her part because during seizures she wets the bed.
  • Monitoring every single thing eaten, because certain ingredients are typically seizure triggers. Aspartame and Splenda specifically.
  • Disgusting-tasting meds that make her gag, twice a day, every day. 
  • Not KNOWING all of your child's seizure triggers, making things like long car rides akin to rolling dice.
  • Watching your child be confused and frightened after a seizure, sometimes for hours, sometimes for more than a day.
  • Knowing every day that that is the day your child could die, because every seizure has the potential to be fatal.
Epilepsy is not:
  • Your child being possessed.
  • Your child acting out or misbehaving. 
  • A failure on your part.
  • Something you can prevent.
  • Something you can protect against.
  • Something you, or anyone else, can cure.

THAT is Epilepsy.

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