More Than Epilepsy

Jace’s journey with epilepsy is something I live every single day, not just as his mom, but as his protector, his voice, and his constant. Jace is now 7 years old, and he had his first seizure at age 5. Nothing prepares you for the moment your child has a seizure. The fear is immediate and overwhelming. Time seems to stop, and all you can think is, “Please be okay.”

When we were told Jace had epilepsy, partial focal seizures, and later status epilepticus, our world changed. Life quickly became medications, doctor visits, emergency plans, and constant awareness. We have faced multiple ICU stays along the way, moments that tested every ounce of strength I had as a mother. Sitting beside his hospital bed, watching machines, waiting, praying… those are moments that never leave you.

Most of Jace’s seizures happen in his sleep. We don’t just “go to bed” like most families. We prepare. We monitor. We stay alert even when we’re exhausted. Jace sleeps close to me, because I need to hear him, feel him, know he’s okay. We use an O2 sensor to track his oxygen levels, watching for any sign that something isn’t right. It’s not just routine, it’s protection. I’m doing everything in my power to help prevent Sudden Unexpected Death in Epilepsy (SUDEP) and keep my son safe.

One of the biggest challenges has been not knowing when the next seizure will happen or how severe it might be. We've learned to stay prepared rather than be paralyzed by fear, to create emergency plans, to educate ourselves, and to trust our instincts as his parents. I will always watch over him. I will always advocate for him. I will always believe in everything he is and everything he will become because Jace isn’t defined by epilepsy. He’s a fighter, a warrior, and my greatest reason to keep going. Through it all, Jace continues to show me who he is. He is strong. He is resilient. He is full of joy. Epilepsy is part of his story, but it does not define him. Every day, he reminds me that progress doesn’t have to be loud to be powerful. 

I know what it’s like to watch your child sleep and wonder if everything is okay, to live in a constant state of awareness, to carry a weight that most people don’t see. It’s exhausting, and it’s overwhelming, but it also means you are showing up for your child in the most powerful way possible. You are stronger than you think. There will be moments that test you, but there will also be moments of progress, of peace, of hope. Hold on to those. Celebrate every victory, no matter how small it may seem to others. A good day matters. A seizure-free day matters. Your child’s smile matters.

Right now, we are celebrating 3 months of seizure freedom. Three months that give us hope and remind me why we fight so hard every single day. I don’t take a single moment of it for granted. This journey isn’t easy. It’s filled with unknowns and moments that test me in ways I never imagined. But Jace has taught me what real strength looks like. He has shown me that even in the hardest moments, there is still light.

We have participated in the Epilepsy Foundation Walk in Houston, Texas, and through the Epilepsy Foundation, I was able to learn about important resources that have helped our family tremendously. The foundation guided us toward seeing an epileptologist, which was a major step in getting more specialized care for Jace. They also helped us understand the importance of genetic testing for epilepsy-specific gene mutations, giving us clearer insight into his condition and care options. The Epilepsy Foundation has been a valuable source of support, education, and connection throughout our journey, helping us advocate more confidently for Jace and ensuring he receives the best care possible.

I share Jace’s story because his journey deserves to be seen, and because I know other parents are walking this same path who need to feel less alone. His story is about more than epilepsy; it’s about strength, resilience, and hope. It’s about turning fear into awareness and challenges into purpose. Every sleepless night, every ICU stay, every precaution we take is part of a love that never stops. And if sharing our story can bring comfort, awareness, or strength to even one other family, then it’s a story worth telling.