When the Seizures Began: A Mother’s Journey Through Epilepsy

To be honest, I had no idea my daughter was having seizures.

For about six months, she would suddenly go limp — her little body collapsing for just a few seconds before she regained herself. I thought she was tired. It often happened in the mornings, just after waking up, when I was helping her get ready for school. I’d gently lift her up, brush her hair from her face, and think, She must not have slept well.

It wasn’t until her preschool teacher mentioned her concerns that I began to understand something deeper was happening. She gently asked if I’d noticed these “spells” at home. That conversation changed everything. What I had mistaken for morning fatigue were, in fact, drop seizures — also known as atonic seizures — sudden and brief losses of muscle tone that cause a person to fall or slump to the ground.

Until that point, the only seizures I’d ever known were grand mal seizures, the ones people picture in movies or textbooks. I didn’t realize how many forms epilepsy could take, or how silent and subtle it could be. Talk about ignorance — but really, it was the kind of unknowing that so many parents share until life teaches them otherwise.

And so began a new chapter — one filled with endless learning, testing, and managing this frightening diagnosis. There were EEGs, CT scans, MRIs. There were medication trials, ketogenic diets, and second opinions. We cycled through medications, each one bringing new hope and, at times, new heartbreak. There were brief stretches of stability and moments when I let myself exhale — only to be pulled back into the uncertainty that epilepsy brings.

Epilepsy became a part of our daily life, woven into the fabric of who we were as a family. It dictated our routines, our fears, and our prayers. Every morning felt like a gamble — would she make it through the day without an episode? Every night, I listened for the soft rhythm of her breathing, attuned to the slightest change in sound.

People often assumed her biggest challenge was her congenital heart disease, but the truth is, it was epilepsy that ultimately took her life. It’s a disorder that demands constant vigilance, and yet, even with the best care, it can remain unpredictable and merciless.

Looking back, I realize how little I knew when this journey began — and how much I wish I’d understood about epilepsy sooner. It’s not just seizures; it’s a complex, often misunderstood condition that affects the whole person — and the whole family. It tests your strength, your faith, and your capacity for hope.

Today, I share our story not only to honor my daughter’s life but also to bring awareness to what epilepsy truly is. For every parent who’s just beginning this journey — bewildered, scared, and searching for answers — know that you’re not alone. Learn everything you can, trust your instincts, and hold your child close. Their courage will teach you more about love and resilience than you could ever imagine.

💜 November is Epilepsy Awareness Month. Let’s continue to shed light, offer compassion, and honor the lives touched — and sometimes lost — to this devastating disorder.

“Not all seizures look like what we see in movies. Sometimes they’re brief, silent, and easy to miss — but they can change a family’s life forever.”

#EpilepsyAwarenessMonth #EndEpilepsy #PurpleForEpilepsy #YouAreNotAlone