A bad dream takes me to a difficult period of our Dravet journey
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…
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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.
For a large part of her life, Austen, my 9-year-old with Dravet syndrome, didn’t seem aware of the limits that seizures brought to her life. She was fearless — so much so that we had to address…
Read moreHave 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…
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,…
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…
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…
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…
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…
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…
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…
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 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…
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…
Not long ago, I wrote a column about how Austen, my 7-year-old daughter with Dravet syndrome, was doing in her new school. She’s gone through a lot of changes in the past year, including her parents splitting…
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