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.

Elizabeth with friends after seizure
Elizabeth (center) on her 14th birthday with friends who surrounded and helped her during a seizure.

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.

Elizabeth graduation
Elizabeth made a Coronavirus piñata to smash after losing prom and graduation to the pandemic.

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?

They were.

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.

Elizabeth with her car
Elizabeth surprised by the pink car she always wanted.

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.

76 thoughts on “Seizures, daughters, and books that matter”

  1. This is the best! Happy Birthday, Elizabeth, and congrats, Mom! Can’t wait to read it!

  2. Alexandria Eubanks

    Thank you for sharing this about your family. I hope she has a wonderful birthday.

  3. Heather Scully

    Wow, this book sounds great! There are not enough books out there showcasing disabilities and conditions such epilepsy in a positive light. It always seems like people believe we are damaged goods and life doesn’t get any better after diagnosis, but frankly that’s not true. We all learn how to live with what we’re given, it’s never really good or bad, it just is. Our lives may be different, but still valid, and still worth hearing about. So thank you for being a voice for many who live that reality everyday.

    Congrats on the book. Have a happy Birthday, Elizabeth!

  4. Nadine Velardo

    Thank you for sharing your experience. Having a child that has medical issues is rough! I’m glad I’m not alone in the fight.

  5. Your daughter sounds like a strong and resilient young lady and I hope she has an absolutely wonderful Birthday!

  6. Thank you for sharing about your family. I would always be so worried about my kids, especially driving. Congratulations and Happy Birthday, Elizabeth!

  7. Love the insight of your world! Happy Birthday Elizabeth. Can’t wait to read this book

  8. Thank you!! Wonderful of you and Elizabeth to share experience with epilepsy, Happy Birthday Elizabeth!!

  9. Happy Birthday Elizabeth! This book sounds amazing! I can’t imagine how scary it was for you as a mom having to watch her go through that. I used to black out a lot as a kid and towards the end had mini seizures but dr’s never figured out why. It’s a horrible feeling. I’m so glad you’ve found a treatment that works for you. Congratulations on the book!

  10. Your daughter is a true wonder and angel. I am so happy for all the good that she has seen and will surely see in the future. A disability never defines who we are. We choose what and who defines us. Happy birthday Elizabeth!!

  11. Such great news! Congratulations to you, Deanna. And happy birthday to Elizabeth!!

  12. Christine abee

    Wow this sound like a great book and education too . Can’t wait to read it.

  13. ButtonsMom2003

    Happy Birthday to Elizabeth! I’ve been following your family’s journey since around 2014. I am in awe of how strong you all are.

  14. Jennifer Zorko

    That is a great story. I can’t wait to read Disco. Happy birthday beautiful girl. May all your dreams come true!

  15. Happy birthday, Elizabeth! You’ve fight hard to get to this smoother road. May it remain obstacle free as you continue your journey through adulthood!


    Happy Birthday Elizabeth

    Can’t wait to read the book it sounds amazing

  17. Happy Birthday Elizabeth. This book looks like a labor of love. I can’t wait to read the story.

  18. OMG what an AMAZING story, I can’t wait to read this, a true fighter you both are, trials and tribulations of a wicked disorder, thank you for sharing, happy birthday Elizabeth


    Happy birthday to Elizabeth and many more!
    Please don’t grow up too fast.
    Take care and be safe

  20. Nancy Schreib

    You handle difficult topics with decorum and grace. I’m looking forward to this story. My many Happy Birthday wishes for Elizabeth. Love and prayers.

  21. Lindsay Sublett

    Talk about a tear jerker. As a parent, I can only imagine. Thank you for sharing and I can’t wait to read this one and share it with ny daughter who recently got into reading.

  22. Happy Birthday Elizabeth You guys are the strongest people I know!!
    I love your books and can’t wait to read this one❤️

  23. Krystall Thompson

    Happy Happy Birthday Elizabeth!! Thank you so very much for sharing this amazing story with us !! I love love your books and I cant wait to read this one.. Congratulations to many many more ..

  24. Happy birthday Elizabeth!! And congratulations on your book! I can’t wait to read it!

  25. Roanna Burkhart

    It is such an honor to have been included in the many struggles and triumphs your family has faced in the last several years. I feel very protective of your kids though we’ve never met. I often update my family when you share news like you’re all a part of our family. I’m excited to read and learn from this book just like I learned so much about infant and child loss in the Forever Series. Your family is never far from my mind and I’m so happy for Elizabeth.

  26. Vanessa Leavitt

    Happiest of birthdays to Elizabeth! I love your writing Deanna and cannot wait to read your next amazing book!!

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