My Daughter Had a Seizure on Her 6th Birthday
A few weeks ago, my daughter Austen turned 6 years old. It was an exciting day that she had been looking forward to for months.
She wanted a unicorn birthday party, complete with a unicorn cake, unicorn decor, and a special unicorn float to use in her granny’s pool. Since we were still in Texas on vacation and all of the adults in our families have been vaccinated, we were able to have a real party for her — something we hadn’t been able to do for any of our kids in over a year.
On the day of her party, Austen woke up completely excited. She immediately put her swimsuit on and was asking to get in the pool shortly after.
Then, around lunchtime, things changed, though I didn’t realize it at first. She climbed into the hammock to take a nap, and when her friends and family arrived, Austen was no longer interested in swimming. She wanted to sit on the laps of her aunts and uncles. Cuddles suddenly became more important to her than fun with her friends.
I should have known what was coming, but I didn’t. Five years into our Dravet syndrome journey and I still get caught off guard.
As we were cleaning up that evening, Austen got off of her lawn chair and lay down on the ground. Suddenly her godmother, Aunt Heather, asked if she was napping. But on second glance we both saw what was going on: a seizure, on her birthday.
Thankfully, Austen has a godmother who is a nurse, an aunt who works for a family practitioner, and another aunt who works for an oxygen company. By the time I had swooped her up and gotten her to the couch, they had everything set up and ready to go.
Soon we realized Austen had a temperature of 101.9, and all of those cuddles she wanted earlier started to make sense.
It’s been a long few weeks dealing with the cold that followed the next day. Austen was kind enough to share it first with Mama, then Daddy. Since then, we’ve all been living off of chicken soup and cold medicine.
We’ve increased her Fintepla (fenfluramine) dose a bit in the hopes of gaining better control over these breakthrough seizures, and we’ll see how it goes. Even with another seizure, only her third since February, I am grateful for how things have turned out. A few years ago, a cold like this would have landed Austen in the PICU. We would have been scrambling to find care for her siblings while we confined ourselves to her room day and night. She likely would have been intubated, which would have led to its own list of problems and complications — swelling, scarring, aching throats, things we’ve dealt with before and hope to never deal with again.
Seizures suck. They always have and always will, every time one rears its ugly head. But it could be so much worse. We know because we’ve lived it and could live it again.
So, we focus on today. This minute, this second. And we try to make it the best we can. We pray for more good days and prepare for the possibility of the bad. One foot in front of the other, throughout this journey of Dravet syndrome.
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