I’ve already received the best Christmas gift ever

When we think of the Christmas season, many traditions come to mind, such as watching holiday movies, caroling, and spending days upon days in the kitchen making sweet and decadent treats. But as with many things in life, Dravet syndrome can sink its teeth into even the happiest of occasions.

One of my favorite holiday activities has always been driving around on late winter nights to see the Christmas lights while nestled in the warmth of the car. But ever since my 8-year-old daughter with Dravet, Austen, had her first seizure, it’s an activity we’ve had to avoid.

While most of the triggers for Austen’s seizures have involved being sick or overheated, some of her early electroencephalogram results showed that flashing lights can also prompt one. So it wasn’t a hard decision for us to say no to Christmas lights each year. We didn’t want to risk it.

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But Austen’s seizures have become less frequent in the past four years. As a result, we’ve been able to slowly add bits of normality back into our lives. She’s stayed overnight at the homes of friends and family, she can now swim on her own, and she even got her ears pierced.

Still, when she and her siblings asked to see Christmas lights this month, I couldn’t help but hesitate. Although she’s had only one seizure this year, the “what ifs” still run through my brain. I didn’t automatically say no, though. I thought about it long and hard. In the end, I decided we could take the risk. If there ever was a time in her life to try it, that time was now.

So we loaded up the car, double-checked that we had her emergency medicine, and were on our way.

Tunnels of wonder

My favorite place to see Christmas lights in our Texas town is the parking lot of a western clothing store. Every year, the store offers a drive-thru maze that winds in and out of various Christmas scenes, all created from lights. There’s a Nativity scene, a Santa Claus, and even a cowboy riding a bull.

But as we drove through, several tunnels of flashing lights terrified me. Approaching the first one, I nearly gave in to my anxiety and asked my boyfriend to turn around and go home. Instead, I looked at him, took a deep breath, and told him to continue. I don’t think I paid attention to a single light that evening because I spent the entire time looking at Austen. I was watching, waiting, and praying a seizure wouldn’t happen.

I saw pure joy on Austen’s face. Her eyes filled with wonder, and I couldn’t help but smile.

Yet another thing that Dravet had cruelly taken from Austen’s childhood was given back to her. It was another experience we could add to our expanding view of normal.

I’m not sure I breathed the entire time we were there. I was an anxious mess. But as we passed through the last tunnel, Austen was still smiling and singing. I felt myself melt.

We did it. She did it. And it was one of the best Christmas presents I could ever have received.

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.

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