Seizures, daughters, and books that matter
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 four enormous red fire trucks at the entrance. Were they for her?
They were.
As I ran down the walkway, eight 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 eight 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 three years writing and revising. I queried it out in each iteration, learning from the kind words of agents who thought the concept of epilepsy and memory loss was important.
And finally, I got it right.
I’m pleased to announce I’m represented by Jess Regel of the Helm Agency. She has a brilliant vision for the finishing touches of the book, and then we’ll try our hand at finding a publishing home.
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.
May 01, 2021 @ 17:30:58
Happy Birthday Elizabeth! Deanna Roy your a Super Woman! Congratulations on this new achievement. Your a blessing to others out there.
May 01, 2021 @ 18:10:04
Happy Birthday!
May 01, 2021 @ 19:20:23
A beautiful story for a beautiful girl. Happy birthday!
May 01, 2021 @ 19:57:56
Hope you have a wonderful day
May 01, 2021 @ 20:06:15
Happy Birthday to Elizabeth. Can’t wait to read this.
May 01, 2021 @ 20:41:24
Wow! What a story! Happy birthday Elizabeth! Congrats mom!
May 01, 2021 @ 21:06:25
That’s amazing! Happy Birthday Elizabeth!
May 01, 2021 @ 21:54:58
Holy wow, this books sounds amazing! I cant wait to celebrate it, and you. xoxo
May 01, 2021 @ 22:03:36
Happy Birthday Elizabeth!
Can’t wait to read.
May 01, 2021 @ 22:36:59
Have a wonderful birthday Elizabeth! The book sounds amazing!
May 01, 2021 @ 23:13:55
Happy birthday Elizabeth
May 01, 2021 @ 23:37:26
Your life story make interesting books! I’d love to read this one!! So thought provoking!
May 02, 2021 @ 02:22:41
Happy Birthday Elizabeth!
May 02, 2021 @ 02:37:52
Happy birthday!
May 02, 2021 @ 08:30:46
Wow, first Happy Birthday Elizabeth and congratulations on the book. A book that sounds amazing and I would love the opportunity to read its heart felt words. You two sound like a force to be reckoned with, going through this life with such strength, resilience and love for eachother. I wish Elizabeth luck in College. Enjoy the journey honey and embrace all the firsts in life!!!!
May 02, 2021 @ 09:11:59
What an amazing story. Congratulations and Happy Birthday!
May 02, 2021 @ 09:39:56
I can’t imagine everything you have been through to make this book happen. Thank you for all you do an congratulations on all your hard work. Book sounds amazing!! Adding it to my TBR list.
May 02, 2021 @ 09:47:21
Happy Birthday!!!!
May 02, 2021 @ 13:04:47
Wow! Happy Birthday, Elizabeth, so much in three little words. I wish for you in your life, peace, love, much happiness, and long healthy life. You deserve it ALL! Deanna, I am in tears, my niece is 18 and graduating high school this month, she is healthy and I thank God each day for that. You are a saint, an angel on earth. I can not imagine what you and your husband have been through, much less what Elizabeth has been through. May God continue to Bless you all ♥
May 02, 2021 @ 15:08:52
Happy Birthday. I love the smash it idea to let it go!!
May 02, 2021 @ 18:48:00
Wonderful!! Can’t wait to read it!!
May 02, 2021 @ 19:32:45
Happy birthday!
May 02, 2021 @ 19:46:15
Happy Birthday, Elizabeth That is an amazing story
May 02, 2021 @ 22:28:30
Happy Birthday!
May 03, 2021 @ 21:06:50
Happy Birthday!!! Hope your day was wonderful!!
May 04, 2021 @ 10:31:12
Happy Happy Birthday!!