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The Milestone I Never Imagined I'd Celebrate

I will never forget the first time my daughter had a seizure. We were at the park in my parents’ subdivision, where they were having a community party. While standing in line for food, a look of absolute horror suddenly came across my child’s face.

I turned to see what she might be looking at, then back at her, bending over to ask what was wrong. The next thing I knew, she was on the ground. I remember saying her name over and over, trying to get her to respond and tell me what was wrong. I remember how limp she was. And the look of her eyes, open yet vacant.

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I can still see people backing away from us rather than coming forward to offer help. I felt helpless, not understanding what was happening with my child. The terror had become my own.

That was three years ago.

Over time, after the ER visit, numerous doctor’s appointments and tests, more seizures and an official diagnosis, the fear subsided somewhat as I learned more about epilepsy and, specifically, my daughter’s seizures.

But they were replaced with a strong, constant anxiety. I worried about if and when another seizure would occur, about putting her on medication and how it would affect her. I was concerned about epilepsy impacting her relationships with her peers.

Even as she responded well to medication and the seizures stopped, I worried. That is the nature of epilepsy.

All I can do is take this journey one day at a time. And celebrate any small victory we can.

One in 26 people will develop epilepsy in their lifetime. More people live with the condition than with autism spectrum disorders, Parkinson's disease, multiple sclerosis and cerebral palsy combined. But not many talk about it.

So I do.

In late December we marked our daughter's being seizure-free for one year. This is a HUGE milestone for anyone with epilepsy. When I posted the above photo of her celebrating with cake pops (her request for the occasion) to the National Epilepsy Foundation’s Facebook page, it received thousands of likes and hundreds of congratulatory comments.

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I still worry.

We don’t know if our daughter will have epilepsy all her life, or if she will outgrow her seizures, something her neurologist has told us is a possibility. If she goes two years without a seizure, they will begin to wean her from the medication to see what happens.

But I can’t look that far ahead. All I can do is take this journey one day at a time. And celebrate any small victory we can.

Photograph by Elizabeth Flora Ross

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