Lennox-Gastaut seizures don’t care about our plans
For families navigating LGS, uncertainty is often part of everyday life
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I’ve learned that making plans when your child lives with Lennox-Gastaut syndrome (LGS) takes flexibility, a good sense of humor, and maybe a crystal ball. If anyone knows where I can find a reliable one, please let me know! Because no matter how carefully I plan, epilepsy has a remarkable ability to rewrite the itinerary.
And I’m not just talking about vacations, holidays, or big celebrations. Sometimes it’s as ordinary as shopping, attending school, or enjoying an afternoon outside.
My daughter, Lola, is 15. She loves music, food, shopping, and getting out of the house. She’s a teenager who wants to have fun, make memories, and experience the world beyond medical appointments.
Unfortunately, seizures don’t consult our family calendar.
One minute, we’re looking forward to an outing. The next, I’m watching Lola closely for another seizure. Suddenly, everything else becomes secondary.
Navigating unpredictability
Lola is excited to be on the school bus in 2026. (Photo by Meredith Antushevich-Howell)
For families navigating LGS, uncertainty is often part of everyday life. Seizures can vary in type, frequency, and severity, making even simple plans difficult to anticipate. When it feels like no one truly gets the struggle, I turn to Lennox-Gastaut Syndrome News, and I always find the right resources and a community for worried LGS parents and caregivers like me, navigating the complexities of this sometimes ruthless form of epilepsy.
Because unless you walk in our LGS shoes, you may not fully understand how unpredictable our lives can be.
Then there’s the challenge of caring for one child while making sure the other doesn’t continually miss out. My son, Sebastian, needs and deserves adventures, spontaneous experiences, and time with his mom, too. I never want either of my children to feel their lives must revolve entirely around epilepsy.
Of course, wanting something and making it happen aren’t always the same thing.
I’ve become remarkably skilled at contingency planning. Before heading somewhere, I consider accessibility, transportation, distance from home, and what we’ll do if Lola begins having seizures.
The Epilepsy Foundation offers resources about seizure safety and preparation for everyday activities. For our family, that preparation has become second nature. Because even when we are enjoying an adventure or experience, I know seizures may always be lurking, waiting to cause an electrical storm in my daughter’s brain and forcing her to be stuck in her own body. It is gut-wrenching to watch Lola go through something that I’m not able to fix.
Meredith and dog Gidget stay close to Lola after she recovers from a seizure in 2026. (Photo by Meredith Antushevich-Howell)
School brings its own challenges. Lola attends the Indiana School for the Blind and Visually Impaired (ISBVI), where she learns, participates, and builds relationships with her friends and the staff. But epilepsy doesn’t respect the school calendar, either.
The Centers for Disease Control and Prevention recognizes that epilepsy can affect school attendance. Those missed days aren’t simply numbers on an attendance report. They’re missed conversations, friendships, and experiences.
And participation matters.
The American Academy of Pediatrics emphasizes the importance of recreation and physical activity for children with disabilities. Every child deserves opportunities to engage in activities that reflect their interests and abilities, with appropriate supports.
For Lola, that might mean a shopping excursion, a school event like a cheerleading competition, or another chance to dress up for prom. For Sebastian, it might mean hockey or a bike ride with his friends.
Lola watches her brother, Sebastian, play hockey at the Indy Fuel Tank in Fishers, Indiana, in 2024. (Photo by Meredith Antushevich-Howell)
And for me? Maybe on occasion, I’d like to make a plan and have it happen just as I imagined.
But here’s something I’ve come to appreciate. Unpredictability doesn’t eliminate the possibility of joy. You may find it in the simple moments. And those are the ones worth celebrating and remembering.
I’ve also come to recognize how important it is to surround ourselves with people who understand that things may change without warning. People who don’t take cancellations personally. Who don’t make us feel guilty. Who recognize that our desire to spend time together hasn’t changed, even when our ability to do so has.
I can’t control when Lola has seizures, and I can’t guarantee that tomorrow will unfold the way I thought.
But I can keep making plans. I will appreciate the moments we do share, allow room for disappointment, and celebrate the gratitude that exists alongside the uncertainty.
Now, about that crystal ball …
Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
