She Called Them The Monsters

When Sydney was younger she called her seizures “the monsters”. She would tell me the monsters were coming before the actual seizure happened. Sydney’s seizure occurred at night and I thought she was having bad nightmares at first. After many videos and journaling her doctor diagnosed her with epilepsy.

Autism has us on high alert and the “what if” of epilepsy adds to my stress and panic attacks. This past week Sydney’s seizure medication was delayed because of the authorization from her insurance. I put the request in two weeks ahead of time so that Syd wouldn’t miss a dose.

Sydney missed two doses of her medication and of course I get a call from her school this week that she had a seizure.

My first concern was making sure she was okay. Then my emotions were everywhere. Why is it so hard for her to get her regular medicine each month? Will I expect this to happen all of the time putting Syd at risk? Do I not send her to school on those days when she hasn’t had her medication? Do we become prisoners in our home again but this time to epilepsy?

Now that Syd is older she tells me it’s a seizure not a monster. The frequency of her seizures has decreased and her neurological team is hopeful she may still grow out of having epilepsy. All I can do is pray that whatever issues the insurance company is having get resolved quickly as I start advocating for next months medication three weeks early this time.



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