“I knew something was wrong and called my daughter. She came, took her to Children’s, and they observed her and sent her home.”
But, during Christmas break that year, Jordynn began having the same symptoms more frequently, “and they were lasting longer and were more severe,” Marr recalls.
Jordynn was taken back to Children’s by ambulance on Christmas Eve, was allowed to come home for Christmas, but had to return for more testing and kept until they had a diagnosis.
“The seizures had weakened her whole right side, and she had to have therapy for two years,” said her mother, Carrie Farley. “She had to have EEG’s and wear electrodes on her head for 24 hours at a time, even to school, and her only complaint was that it was heavy.
“Her type of epilepsy is benign rolandic, and she should outgrow it by adolescence. We’re relieved, but had felt very helpless, because it’s something we couldn’t control. As parents, we want to shield our children from disappointments. She’s been very strong, but still had her moments when she asked ‘Why me?’
“She was put on medication and is under control, but it’s concerning when she gets confused and forgets things. Her most recent seizure was two weeks ago, but it was much milder.
“The serious seizures were when she was asleep, so we had baby monitors in her room, and had to put up baby gates because, with her meds, she’d sleepwalk. Behind the scenes, no one knows what she goes through – I’m very proud of her, she’s one happy, tough cookie.”
At her grandmother’s, Jordynn “told me she wanted us to write a book together,” said Marr. “She wanted to tell her story to inspire other people, and asked me to help her come up with a title.
“She’s still active in sports and church, and acts in plays at school — and when she said ‘I’m not stopping, it won’t defeat me,’ we came up with “Unstoppable Me: Living With Epilepsy.” I asked her ‘how is living with epilepsy, can you describe it?’ and when she was done writing, I was amazed.”
And, always the teacher, Marr became her editor. “I told her she had to correct some grammar and spelling.”
Jordynn said, “Grandma’s stubborn, but she’s a good teacher. I wanted to inspire mostly kids and adults who have a problem that’s not normal. I wanted to show them that you can still do amazing things like I did.
“I didn’t even know what I had when the seizures started, but my handwriting got worse and went to a scribble-scrabble. That’s gotten better, and I know how to make it even better now — my right hand starts shaking and I’m right-handed, but I’m glad I don’t have bad seizures any more.
“Through all that, I started writing about how it felt to have it, and then getting the EEG’s, the treatment, and all the things I’ve done. At the end, I wrote a message to kids and adults about how, if I could do it, they could, too.”
When Jordynn’s book was complete, her mother had it published through Amazon and said “I was thrilled and so proud — she’s always loved reading and writing, being creative — but I was still amazed.”
Contact this writer at email@example.com.
WHERE TO BUY
What: “Unstoppable Me: Living With Epilepsy,” a book written by Jordynn Farley
Where: The book can be purchased online through beautyfromashes44.com. Five dollars from each $20 book sale will go to Dayton Children’s Hospital Neurology Department, and another five will go to the Dayton Epilepsy Foundation.
Also: The book also can be purchased through Amazon.