The Storm Within: Living with Childhood Epilepsy

What is the metaphor when describing someone living with a progressive disease inside them? Their world, and ours, is painted with multiple flashes of lightning, accompanied by the humming sounds of uncertainty. This is what our lives are like, having a child with epilepsy. We hear the words epilepsy in clinical terms- seizures, EEG (electroencephalogram), medications, drug-resistant epilepsy, neurology appointments, and fun discussions with the neurosurgeon. However, to really understand what this feels like, you have to understand the (body) language. You need to understand the language of this disastrous storm.

The Calm Before

There are days when everything feels at a standstill- calm skies, the sunshine illuminating the blue, and the steady rhythm of our daily routine, accompanied by the sounds coming from his boombox. I tucked my son into bed like any loving parent would do for their child, full of dreams, unaware that the weather temperament can change at any moment.

The Lightning Strikes

AND then, without warning, it hits! A seizure can be sudden, like a flash of lightning splitting the sky; people freeze, and everything stops. There is panic, fear, and a sense of helplessness. For a brief moment, it feels like the world is filled with chaos. No matter how frequent it happens, it never gets easier to watch.

The Sounds of Thunder

The aftermath is just as real: fatigue, confusion, and the emotional weight. At times, my son wakes up not knowing where he is, gets emotional, physically resistant, and then drifts back to sleep (postictal)--this can be for hours. Like thunder rumbling after the flash, the effects linger long after the seizure ends, like water from a flash flood!

The Storms Are Not Who They Are

It is important to remember that the storm is not a child; my child is bright, loving, stubbornly resilient, and smiles every day, no matter how bad the day can be. Children are more than the storms they weather. We learned to recognize the signs—subtle shifts in mood or a sinking energy—that warn of gathering clouds. We have learned to carry emergency or rescue meds like an umbrella. Moreover, we have learned that sometimes, all you can do is hold them tightly and ride it out together. In my case, hold him, change him, clean him up from vomit or incontinence--we ride this shitty storm out together.

The Quiet Strength

While the storm starts to weaken, there is strength. Incredible and indestructible strength. Not just in my son, who faces each day not knowing what it might bring, but in every child living with epilepsy. My son faced this crippling disease with quiet courage. He keeps moving forward, living each day without fear of his own body turning against him, and he teaches the rest of us what true resilience looks like.

Building Shelter Together, With A Village

As parents, caregivers, educators, friends, and advocates, we become their shelter. We fight for understanding; we want them to understand my son, we want access (to top-notch doctors and surgeons), research, and compassion. We share stories with strangers and our own family members, not just to raise awareness, but to build a world where no child has to face their storms alone. So, if you are raising a child with epilepsy, or know someone who has the progressive disease, remember they carry skies that sometimes darken. However, they are not broken. They are not fragile. They are fierce like the wind, steady like the rain and wind, and radiant like the sun that always returns. Because after every storm, there is light.