It’s a Busy Time of Year, but Seizures Are No Longer Stopping Us
Columnist Meagan Cheney's daughter heads back to school after a fun, seizure-free summer
Our family’s summer came to an end last week when Austen, my 7-year-old daughter with Dravet syndrome, and her siblings returned to school.
It was a great summer, filled with swimming, exploring, and time for the kids to just be kids. This was intentional on my part; I didn’t want any big plans, expensive trips, or crazy expenses. I simply wanted to have fun and spend quality time together as a family.
Now that I’m a full-time teacher and the kids are no longer being home-schooled, this family time was something I desperately needed. Fall and spring tend to be busy months for us, with a small respite over the winter holidays.
Austen will soon start theater classes, and her brother will start soccer. Their older sister is also in theater at her school and will rehearse four days a week until performances later in the fall. Sometimes I feel like I barely have time to take a breath between activities, but I know these things make my kids happy, and that’s all that matters.
I also know that, a few years ago, Austen didn’t have the opportunity to be this busy. During the summer of 2019, we were barely able to leave our home because Austen was having up to 10 tonic-clonic seizures a day. Her dad and I were unable to leave the house at the same time most days, because if Austen wasn’t seizing, she was postictal, and we knew another seizure was on the way.
I’m sure many are tired of me praising Fintepla (fenfluramine), because even though it’s been our “golden ticket,” I know that’s not been the case for other Dravet families. But it has changed our lives. Austen still hasn’t had a big seizure since March, which means she spent an entire summer swimming and playing in the excruciatingly hot Texas sun without overheating and having one. I can’t begin to describe how huge that is. I wasn’t sure if it would ever happen.
But here we are, on the other side of that obstacle.
Now I’m signing her up for theater classes and doing normal activities with my extraordinary little girl, and I’m so grateful for every moment.
I might be a very tired mama this fall, and I might sleep through Christmas break. But it’s worth it to see the smiles on my kids’ faces, and to watch Austen overcome more and more of the obstacles that used to stop her.
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.