Thanksgiving is one of my top two favorite holidays. But when I was a kid, my family did something at the Thanksgiving dinner table that I absolutely hated. It was a tradition many American families have: going around one by one to say what you are thankful for that year.
It was just so awkward to be put on the spot like that. And at 6 or 7 years old, I had no idea what I was thankful for, so I’d usually shout out something like “Jesus” or “deviled eggs.” I just wanted all the grown-ups’ monologues to be over with ASAP so I could dig into my cornbread dressing.
In 2020, when everything seems to have been turned upside down, it may feel hard to find something to be thankful for — especially when our world revolves around a disease like Dravet syndrome. But of the last five years with Dravet, 2020 has been our best one yet. For that, I am hugely thankful.
At one point in 2019, my daughter Austen was having between seven and 10 tonic-clonic seizures a day. That is in addition to all the eye flutters and absence seizures I simply didn’t count. We started Fintepla (fenfluramine) in July 2019, and though it took us a few months to find her a good dose, by the end of 2019 we saw some progress.
First, it was one seizure a week, then every few weeks, then once a month by early 2020. I would have been happy with that, as complete seizure freedom has never seemed like a realistic goal for Austen.
But it didn’t stop there. While 2020 was busy taking so many things away from us, it gave us 83 days of seizure freedom between March and June. We were back to once-a-month seizures after that, but I had seen a glimpse of what was possible. I prayed we would see it again.
As I write this, it has been 90 days since Austen’s last tonic-clonic seizure. We still see absence seizures, but like before, I simply don’t count them. Is that crazy? Maybe. But after seven to 10 tonic-clonic seizures a day, absence seizures really aren’t that big of a deal to us.
This is the longest Austen has ever gone seizure-free since her first seizure at 5 months old. It’s the first time I’ve even considered the possibility of her going 100 days or longer without a seizure interrupting her day.
Ninety days. In three days, it will be three full months. A quarter of a year. I just can’t believe it. Usually, I wouldn’t mention it at all. Because, while I believe in Jesus, I also believe in all the seizure juju. I will knock on wood like crazy once I send this column off.
I’m so thankful that 2020 has given us this gift — has given Austen this gift. Civilization could collapse tomorrow, and I’d still stand up on Thanksgiving and tearfully tell everyone how thankful I am this year. Then, I’d dig into my dressing.
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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