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Twenty months. That’s how long it’s been since the COVID-19 pandemic hit the U.S. and I withdrew my kids from school. I was terrified for all three of them, but especially my daughter Austen, 6, who has Dravet syndrome. Fewer children have been sick with COVID-19 than adults, and…

Austen, my 6-year-old daughter with Dravet syndrome, went to the neurologist at the end of September. It was the first time we’ve seen her in the office since the COVID-19 pandemic started. The appointment went smoothly, and Austen barely cried during her lab work. We were so excited when…

Earlier this summer, my husband and I wrestled with the decision about whether to continue home schooling our kids for another year or send them back to regular school. It was a hard decision, but ultimately, we decided to home-school them again because the number of COVID-19 cases…

“Mom, how is rain made?” It was a simple question posed by the sweet, 3-year-old voice coming from the back seat of the car. This was a decade ago, and the question came from my oldest daughter, Addisen, who is now 13. She has always been curious about the big…

My daughter Austen’s first seizure was one of the worst nights of my life. She is 6 years old now, and has been diagnosed with Dravet syndrome for five. My heart still pounds and my hands become sweaty just thinking of that first night holding my baby as I…

Over the last year, we have pretty much kept our family in a constant state of quarantine, fearing what would happen if Austen, our 6-year-old with Dravet syndrome, caught the coronavirus. When something as small as the adenovirus sends her to the PICU, the idea of the COVID-19 virus…

The previous weekend, I did something I haven’t done since March of last year: I woke up early, got all of the kids into the car, and headed to church. Truthfully, I had a small panic attack the previous night about all the “what ifs” that might happen in this…

“Have you tried the ketogenic diet?” I’ve been asked this question more times than I can count. When people learn that we tried cannabis therapy with Austen, my 6-year-old with Dravet syndrome, before medications like Onfi (clobazam) and Fintepla (fenfluramine), they always want to know if we have tried…

Ever since I have become a mom, I have always chosen to safely co-sleep with my babies until they were weaned. It might not be what works for every family, but for my family, it was the best choice. My oldest daughter, Addisen, 13, weaned when she was 2…

One of my biggest fears in having a special needs child has always been how society would treat them. My husband and I both have aunts with special needs, and we know firsthand how cruel the world can be to people who don’t fit into the perfect dimensions society deems…