Our Dravet Syndrome Journey Comes Full Circle
When my daughter Austen, now 6, started having seizures years ago due to Dravet syndrome, it took us over six months to receive a diagnosis. That period was a whirlwind of seizures, hospitalizations,…
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.
Back-to-school season is usually filled with wonder and excitement. New clothes, new books, and even the smell of new pencils make me blissfully happy. As a teacher, going back to school with my…
Read moreWhen my daughter Austen, now 6, started having seizures years ago due to Dravet syndrome, it took us over six months to receive a diagnosis. That period was a whirlwind of seizures, hospitalizations,…
“Mom, I’ve decided I don’t want you working anymore. Now I have to go to school even earlier, and I get home even later.” Those are the words of my 8-year-old son, Atlas. Until…
“Mom, is Austen OK?” Addi, my 13-year-old daughter, was on the school bus headed home last week when she sent me the text. I was confused but assured her that…
I sent my two youngest children back to school earlier this month. While their oldest sister, Addi, 13, returned to school in November, neither my son, Atlas, 8, nor his younger sister,…
I sent my two youngest kids back to school this month for the first time since the COVID-19 pandemic began. I wasn’t too worried about my son, Atlas, 8. He has thrived through two…
I took all three of my children out of school on March 13, 2020, the day before our local school district decided to switch to remote learning because of the COVID-19 pandemic. This was…
In June 2016, I packed up my home in Texas, my three children, and my entire life, and moved 752 miles away to Colorado in search of hope. Hope that we could delay putting…
Our lives are changing, and this time, it isn’t due to the effects of Dravet syndrome. I have mostly been a stay-at-home mom for the last 11 years. I have a degree in elementary…
Thanksgiving has always been one of my favorite holidays. An entire day dedicated to food? That’s right up my alley. Usually, we stay home in Colorado to cook and relax as a nuclear family,…
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…
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…
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,…
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