A Mother’s Story
By MARY FISCHER
Our son, Peter, had a seizure when he was 9 years old – a shock to his family as we witnessed, for the first time, a grand mal seizure.
It seemed to be a one off. But it was off to Peter’s doctor. Petit mals was the misdiagnosis. He’ll grow out of them, we were told.
Then, the seizures became more frequent as he became a tween. Off to the neurologist. Confusional migraines was the second misdiagnosis. We were instructed to try some meds – and our long medication journey began.
Middle school was rough, but it was a cake walk compared to the stress of high school.
Peter’s courage in living with epilepsy is awe-inspiring. If you’d had a seizure in the middle of a class – thrashing, speaking gibberish, stumbling across desks, clenched limbs, head turning – would you ever go back to that classroom? Peter did. Many times – in middle school, high school, and through college where he earned his associate’s degree.
After one seizure, one of the girls in his class hit him on his head and said, “Don’t do that again. You scared me.”
After another seizure, Peter did not go to the school clinic as required. A classmate followed him to make sure he made it to his next class, then ratted him out to the school nurse.
Yes, Peter has had guardian angels – but friends are few and far between when you have epilepsy.
Peter returned from an overnight stay at a friend’s house. Emptying his backpack, he brought out an unused beach towel and his swimsuit. I commented that I didn’t think his friend had a pool. He simply responded that he expected to invited out on the boat, but wasn’t. These people had a family member with epilepsy yet were not comfortable, or willing, to include Peter because he might have a seizure. I don’t think my heart will ever heal from that break.
The isolation of epilepsy snuck into our lives – taking with it so many things we had enjoyed in our pre-epilepsy lives, including friends, fun week-ends and memorable camping trips.
Like many other families, we, his parents, are not only his transportation and medication overseers, we’re also his social network. You see, Peter hangs with us and our friends. We’re older than his peers, but we love hanging out with him and trying to make life as “normal” as it can be.
Our first encounter with JoshProvides was around August of 2015.
Desperate for more help than any MD seemed able to give – I found JoshProvides while cruising the Internet in desperation one night.
When JoshProvides popped up, I read the story of Josh and what Bruce and Sandi were doing. I emailed them asking if I could attend a meeting. Even today, I refer to it as the most tear-stained email I’ve ever sent.
I remember I was anxious at that first meeting of the Epilepsy Support Group. I was also dumfounded to sit around a table with 20 others – parents, young adults, a nurse and an attorney – all there to help each other, and us.
Shortly after was a JoshProvides Support Walk.
Peter and I reached the group in time to hear two amazing young women, Elizabeth and Shawna, give heartfelt speeches. I was in tears and I think Peter’s jaw dropped. These girls understood. From their words to our souls.
I hadn’t been able to talk Peter into going to a support group meeting yet – but those lovely young ladies made him a fan. And a year later, Peter and I were asked to give a speech at the JoshProvides walk. For the walk that year, Peter named his team Peter’s Power Pushers. That was very revealing. Peter powers and pushes through every day of his life. Everyone with seizures does and so do those of us who love them.
JoshProvides has become a focus of our lives. We attend support group meetings. We’ve gone bowling together, to birthday parties and holiday pot lucks. But more than that, way more than that – we have friends, confidantes and emotional crutches.
And so, our journey continues.
Thanks to JoshProvides we have information and access to dedicated doctors, nurses and social workers who join the meetings to educate, inspire and offer hope. JoshProvides has taught us that epilepsy does not define Peter, but it has made him a warrior. And made us humble.
Josh really does provide.
It provides Hope. It provides Help. And so do all of you.