One Step Forward, Another Step Backward
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…
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.
I made a deal with my late daughter, Austen, when she was just 1 year old. The deal was that she’d make it to 10. That was because she had Dravet syndrome, and…
Read moreAusten, 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…
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…
“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 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…
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…
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…
“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…
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…
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…
This past week, we reached another milestone in the baby steps we are taking to return to our normal lives amid the pandemic. And the experience was amazing. Since we moved to Colorado in…
Another year brings another debate with myself: to home-school next year, or not to home-school next year? I started our home-schooling journey in 2013 when my oldest daughter, Addisen, was 5. I home-schooled her…
This past week our family suffered a tragic loss. Our rabbit, Susie Stew, whom we had adopted roughly 15 months earlier, passed away in her sleep. Between the time our neighbors had her (at…
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