After 20 months, the kids are returning to school. One of them, anyway. Originally, we were going to wait until all three kids had been fully vaccinated against COVID-19 before we allowed any of them to return to school. But Addi, 13, has…
The Journey to the Truth
— Meagan Earley
Meagan Earley lives in Paris, Texas, with her three children, dogs, cats, and a turtle named Carl. She is a preschool teacher and a caregiver to her daughter, Austen, who was diagnosed with Dravet syndrome in 2016. Meagan has relied on her village of other Dravet syndrome caregivers in the years since Austen’s diagnosis, and writes her column in the hope of paying it forward to other parents who are fighting each day to help their child thrive in all circumstances.
Featured Post
I tend to second-guess myself. I’ve done it my entire life. But it got worse when I became a mom, and worse again when I became a mom to a special needs child. When your entire world is centered around keeping a child alive, it’s hard not to fixate on…
I’m the only person on my block who has their Christmas tree up, and I have zero shame about that. Usually, it goes up on Nov. 1, but this year, I managed to wait until the 4th to get my decorations out. The reason is that I hate November, a…
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…
Columns
We Experienced a COVID-19 Scare
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…
Recent Posts
- Altered brain support cells drive Dravet syndrome symptoms in mice
- I wouldn’t change a single thing about my daughter’s story
- New study links mitochondrial dysfunction to Dravet and other DEEs
- FDA, developer align on pivotal study of Dravet syndrome gene therapy ETX101
- Storing memories to teach future generations about our journey