Cautiously celebrating a year of seizure freedom for my daughter

When my 10-year-old daughter, Avery, was younger, we religiously kept track of the length of time she’d go without having a seizure. She started having seizures when she was only 3 months old. We discovered later that the seizures were due to a difference in her SCN1A gene, which led to a diagnosis of Dravet syndrome.

For the first couple years of her life, we primarily kept track by the number of days, and then weeks, that she went without a seizure. We’d celebrate one week of freedom from seizures, then two weeks, and three weeks before resetting the count to day one. As Avery’s seizures morphed, she began to have small absence seizures. During that season, we counted seizure freedom minute to minute.

I marked each seizure on the calendar and took photos to time-stamp the date. We accumulated rows and rows of tallies on notebook paper.

If I could’ve told myself then that we’d eventually be standing at the precipice of a full year of seizure freedom, I wouldn’t have believed it. It felt impossible, yet here we are. In just a few days, Avery will reach that huge milestone.

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Conflicting emotions

In the Dravet syndrome community, I’ve noticed an almost unspoken reality: As caregivers, we’ve become so accustomed to the other shoe dropping that, when we’re awaiting a milestone or other occasion to celebrate, we don’t dare to speak it into the universe, on the off chance that everything will fall apart before we make it there. I feel a bit of that as I write these words, in fact.

This will be only the second time in Avery’s 10 years of life that she’ll have made it a full year without having a visible seizure. Would you believe that the last time she made it 365 days, she had a seizure on day 366? After a big day of doing many things she loved, celebrating, and shouting into the world how incredibly grateful we were for a full year of seizure freedom, it was heart-wrenching and almost laughable that she had a seizure in the middle of a church service on the 366th day.

So now, as I watch the pages of the calendar flip, how do I feel? I feel grateful that the tumultuous days of weekly and monthly ambulance rides, hospital stays, and trauma have seemed to give way to this new season that is much less demanding and heartbreaking. It is amazing to see how valuable those days, weeks, and months of seizure freedom are for Avery’s brain.

I also feel sad, though, because I hate that this is even a thing for my daughter. I hate that keeping track of seizures is something we do in our home. ​

I feel apprehensive, too. Since the beginning of this journey, I’ve created a bad habit in which every time Avery goes a personal record-breaking length of time without a seizure, I allow myself to hope.  I start to believe that maybe this will be the time she never has a seizure again. But time after time, eventually a seizure takes hold of her body and we find ourselves doing that familiar dance with safety protocols, rescue medications, oxygen administration, and 911 calls.

While a year of seizure freedom is beyond phenomenal, I know another one could be just around the corner on any given day, seemingly for no reason at all.

At the end of the day, with all these feelings enveloping my heart, I can’t help but think about how much good there has been in these past 365 days. So I guess I’ll allow myself to feel just a little hopeful. I hope that counting seizure freedom by years will become the new normal for our girl.

I wait in anticipation for the one-year mark to approach.

Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.