The Perfect Day I Once Thought to Be Unimaginable

I’m trying something new this summer: A slow, intentional way of life. I dream of mornings that aren’t rushed or chaotic, and evenings when I’m able to get the kids bathed and in bed without either of us breaking down in tears or shouting.

I’m not delusional. I know my life will never be picture-perfect, even if Dravet syndrome weren’t present. But today was pretty close.

This morning I took my oldest daughter Addisen, 13, to get her second COVID-19 vaccine. Atlas, 7, and Austen, 6, were in tow so we ran a few errands to let my husband sleep in on his first day off of work in over a week.

After he woke up we packed the car and took the kids to our favorite lake, which would be considered a large pond in Texas. On the way we stopped at a local ice cream shop and got everyone a cone, then we spent the afternoon swimming. Not a seizure in sight.

It’s evening now. We had an easy and simple dinner of sandwiches, everyone had their baths, and is now in bed. Austen isn’t asleep yet — she’s singing to herself while I write — but she will drift off soon. We recently weaned her off of melatonin so it takes her a minute, but her sleep issues are no longer as prominent as they were when she was younger and seizing more.

Two years ago a day like today would not have happened. It could not have happened with the 7-10 tonic-clonic seizures Austen was having each day. If you told me it was in our future, I would have told you you’re dreaming. It just didn’t seem possible.

But here we are, and today did happen. Thanks to her amazing medical team, Fintepla (fenfluramine), and a little girl who never backs down from a challenge.

I feared the future when we got Austen’s Dravet syndrome diagnosis. Her symptoms were “classic” and seemed only to be getting worse. I thought we had things under control while she used THC and CBD but eventually the seizures returned and the disease progressed. In summer 2019, I was terrified. I couldn’t think about happy days like today, I couldn’t even imagine them. In my darkest moments, I feared Austen wouldn’t be with us another year.

But here we are, happier, healthier, and even stronger than before. I’m still scared of the future, don’t get me wrong. There is no guarantee Fintepla will work forever. I know that. But while I still fear the future, I don’t let it stop me from enjoying the present. And that’s a gift I will always cherish.

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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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