Austen, my 8-year-old daughter with Dravet syndrome, is in the third grade this year. That means she’ll take standardized testing for the first time. That’s both good and bad. On the one hand, it’s amazing she’s doing well enough to take the test! On the other hand, she…
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.
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I grew up in northeastern Texas, where it snows about once a year. Usually, it’s just a dusting that stays on the ground one to two days at most. Every few years, though, Mother Nature sends a real winter storm our way. We just survived the latest one, a week…
Have you ever had a dream that shook you to your core? I’m talking about a dream that seemed so real you woke up crying in the middle of the night? I did a few nights ago. In the dream, my 8-year-old daughter Austen, who has Dravet syndrome, had…
When we think of the Christmas season, many traditions come to mind, such as watching holiday movies, caroling, and spending days upon days in the kitchen making sweet and decadent treats. But as with many things in life, Dravet syndrome can sink its teeth into even the happiest of…
As a parent of three, I took many experiences with my two oldest kids for granted. But because my youngest, Austen, has Dravet syndrome, I thought many of them — like swimming on her own, discovering new toys, or even completing a full week at school without needing…
October 2021 was one of the hardest months of my life. My marriage was ending, and in the chaos, the only clear thought I had was that I needed to get Austen, my now 8-year-old daughter with Dravet syndrome, and her siblings back to Texas. That might sound…
When Austen, my 8-year-old with Dravet syndrome, was born, I’d been married for almost five years. My relationship was already rocky by then, but I was determined I wouldn’t let it fail. I’d grown up in a broken home, and I didn’t want the same for my kids. Even…
As I was driving recently, I noticed the leaves were starting to turn. Here in Texas, it’s because of the drought rather than seasonal changes. But it still reminded me that fall isn’t too far off, with the start of school and Austen, my 8-year-old with Dravet syndrome, beginning…
Author Kellie Elmore has a great quote I find fitting for my family at the start of summer: “I love how summer just wraps its arms around you like a warm blanket.” As a teacher and single parent of three children, I typically spend the summer playing catch-up.
When Austen, my 7-year-old daughter with Dravet syndrome, was born, I had no idea that the disease existed, much less that it was embedded in my perfect baby’s DNA. Even when she began experiencing seizures, the next four months were like swimming in a murky lake. We knew…
Last Monday, we skipped soccer practice for Austen, my 7-year-old daughter with Dravet syndrome. Soccer is a regular part of her routine. No one was sick, and the weather was nice. But I was exhausted, and all I wanted to do was get home, put away two loads…
I wrote in my last column about how I have to allow life with Austen, my 7-year-old daughter with Dravet syndrome, to ebb and flow in keeping with her needs. This demand often requires me to put my own wants aside. The perfect example of it came on…
Jay-Z once said, “Don’t ever go with the flow. Be the flow.” And while I love Hov and his music as much as any self-respecting ’90s kid, that advice doesn’t always work when your child has special needs. Just before Christmas break, we made the decision to move…
Recent Posts
- Dravet behavior, social issues emerge in toddlerhood, study finds
- A winter storm reminds me of magical snow days with Austen
- Online parent coaching helps Dravet kids build independence
- Cell study offers new clues to Dravet seizure triggers
- Epidiolex reduces seizures in rare Dravet syndrome cases: Study
- Faster-than-expected enrollment seen in trial testing zorevunersen for Dravet
- The little lost journal that brings back memories of our Dravet journey
- FDA grants breakthrough status to new gene therapy for Dravet syndrome
- First look at ETX101 suggests early benefits for children with Dravet
- Grief comes in waves and reminds me of the start of a long journey