In the life of an epilepsy mom, the longest minute of your life is the one when your child stops breathing.
I’ve been through it more than once. I’ve seen Elizabeth turn completely blue on the floor of a restaurant.
I’ve dried her off, shivering, after seizing in a downpour at Disneyland.
I’ve snatched her off play equipment, lifted her out of swimming pools. Once I slammed my way through a crowd at a football stadium after she got just enough warning to march off the field during a halftime show. She hid behind a bench to avoid anyone in the huge audience pulling out a cell phone and hitting record while she seized.
Being a teen with epilepsy during the era of instant social media has extra challenges.
Today, Elizabeth turns 19. Her last year as a teen. After taking a gap year to avoid the perils of catching Covid 19 while battling epilepsy, she’s planning for her first apartment, for her classes in the fall.
It’s time to let go.
I’ve written about her many times on this blog, filed under Elizabeth. It’s been a long road as anti-seizure meds often don’t work for her. As she moved to her teen years, we spent a week at Dell Children’s Hospital to see if she was a candidate for brain surgery. (She isn’t.)
I learned about the Disco Room in the epilepsy ward, where teens with seizure disorders could meet each other and dance without fear of the lights, as nurses waited by the door. The moment I saw it, I knew absolutely, the book I would write for Elizabeth would include it.
I didn’t write it right away. Elizabeth’s condition deteriorated during that year and we struggled to find any treatment that would work for her at all. During the worst period, she had two seizures in a day. Sometimes they began with her terrified screaming that would unnerve even the calmest of nurses or emergency techs before she fell unconscious.
A few months later, when we thought we had a medicine that was helping, it happened again during a field trip with her American Sign Language class. I got the call and raced to the mall, noting enormous red fire trucks at the entrance. Were they for her?
As I ran down the walkway, a half-dozen tricked-out fire fighters strode through the doors like the opening to a big movie action-adventure scene. Elizabeth was going to tell me all about them! Except when I found her with the EMTs, she didn’t know what I was talking about. She had no memory of walking through the mall, of collapsing, and certainly not of several hunky fire fighters surrounding her and clearing space.
Three years later, she still doesn’t remember them.
Epilepsy patients often lose as much as a half-hour before each seizure, so it wasn’t unusual. Still, I studied memory loss with seizures and learned about how the hippocampus part of the brain could be hit. I found cases where seizures caused complete, permanent memory loss. One more thing to worry about.
But in late 2018, ten years into our fight, we got a miracle — a new anti-seizure medicine combination that worked. Months flew by with no problems. Elizabeth learned to drive and got her first car. The independence we weren’t certain would ever come had arrived.
I never stopped thinking about that Disco Room, so I wrote that scene for Elizabeth’s book, two epilepsy patients meeting for the first time under the colored lights of a disco ball. The guy works up the nerve to introduce himself. They grin. It’s working.
Then the girl has a seizure and forgets he exists.
I spent years writing and revising this story. And finally, it’s ready.
My journey as Elizabeth’s mom will never be over. I’ll still be racing across town at the call from someone who finds my number on her emergency alert bracelet or pulls it from her phone.
But the book we envisioned together has finally found its footing.
We hope it finds its way into the hands of people like her. My fiercest goal is for others with epilepsy to see themselves in the story and read about how to cope, and more importantly, about finding the love we all deserve.
Happy Birthday, Elizabeth. The journey has been long, and hard, but I’d do it all over again to arrive at the wonderful young woman you’ve become.
This Kiss will release on Nov. 9, 2023.