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When Epilepsy Changes How You Pack the Diaper Bag

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I was sitting in the waiting room outside our doctor’s office with my two sons. My youngest had just been diagnosed with Tuberous sclerosis complex (TSC) after having two seizures at home. He was 3 months old.

With us sat another mom also holding her infant. Our actions mirrored one another as we sat outside the door. We both would stand up and walk around with our babies, sometimes lingering close to a window; one or both of us would be rifling through our diaper bags for a small toy. As I watched her reach into her bag, I wondered, and almost hoped, if she also had to reach around something in her bag that made her baby different, like mine.

It was only a few short weeks after my son was diagnosed and I felt a desperation to cure this unknown loneliness I was feeling. I had two seemingly healthy boys, but despite the outward appearance, my baby had a rare disease that epilepsy unveiled. If that wasn’t disheartening enough, he’d developed a rare form of epilepsy called infantile spasms. Most literature refers to it as “a catastrophic form of epilepsy.” This was always at the front of my mind, especially when I took him out in public. To an onlooker or to someone like this other mommy at the doctor’s office, his seizures didn’t look like epilepsy. My son’s arms and legs would flex out in a rhythmic motion and his trunk would draw into center. It could be mistaken as the “startle reflex” common to infants, but my son would make these motions over and over up to 15 minutes at a time. Each motion was another seizure. I always had to be ready and prepared to intervene if necessary. On this day while looking through my diaper bag, my hand brushed up against the seizure rescue medication. It was always a reminder of how different our lives had become and how lonely I felt.

I watched almost enviously as the other mommy pulled out toys and diapers from her bag void of the rescue medication. I didn’t want to be the only mom who not only worried about keeping her infant quiet in the waiting room, but also worried about whether or not I would be using this medication to stop my son’s seizures. I was sad thinking about the day I removed his toys to make room for a medication that may someday save his life, and I became angry.

A few minutes in the doctor’s office waiting room was enough to remind me that we were now different and nothing would ever be the same. A flood of emotion about all the things he would not be able to do crashed down on me as I sat silently holding my little boy. Epilepsy can be a thief if not controlled. It can take away developmental progress and can deny someone of a normal life even when they’re too young to realize it.

A seizure is not “just a seizure.” It takes over and steals the peace of mind from mommies like me. My baby is now 7 and his epilepsy is still not controlled. Instead of watching his little body silently lose control as it did as an infant, he now falls to the ground and shakes violently. The only noise is the grunting he makes as he struggles against the involuntary movement of his body. And I’m always hoping it’s the last seizure I see.

The last seven years are full of memories like that afternoon at the doctor’s office where I have felt crushed and alone, holding back  tears, surrounded by strangers, silently wishing someone else was just like us and so tired of feeling alone. It’s better than it was,but going out with a child who struggles so much can be difficult.

Please remember this story and remind yourself to be kind to others.

Because at any moment, someone is silently struggling.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.