When Austen, my 7-year-old daughter with Dravet syndrome, was born, I didn’t have many things in her life planned out yet. I didn’t know what school she would go to, what sports I would put her in, or what preschool she might attend one day. I’m just not one…
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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There’s something special about a good pair of pajamas. A nice, matching set somehow makes me feel simultaneously cozy and put together. They also mean you don’t look too crazy during middle-of-the-night trips to the emergency room (ER), and if they’re of good quality, they can last forever. When my…
In August, Austen, my 7-year-old daughter with Dravet syndrome, started a new school for the second time this year. When we moved to Texas from Colorado last winter, I put my children into the schools in our district. But over the summer, I got a job teaching for…
For most of her life until now, my 7-year-old daughter, Austen, who has Dravet syndrome, held the same record for the number of days she’d gone without a seizure. Dravet syndrome is characterized by frequent seizures that are often resistant to treatment. Austen’s record was 178 days.
I just finished my first month as an official first-year teacher. There have been quite a few tears and even more smiles, along with hugs and meltdowns — by both my students and myself. But as I looked back on how it’s gone, I arrived at a pretty funny conclusion:…
Our family’s summer came to an end last week when Austen, my 7-year-old daughter with Dravet syndrome, and her siblings returned to school. It was a great summer, filled with swimming, exploring, and time for the kids to just be kids. This was intentional on my part; I didn’t…
It’s been a long time since I’ve written — too long. But I have some amazing news to share. When Austen, my 7-year-old with Dravet syndrome, started having seizures, it put us on a roller coaster of doctor appointments, hospitalizations, new medications, and hoping against all hope that somehow…
Later today, after writing this column, I will leave for a five-day vacation without my kids. My mom and dad will be taking care of my three children, including my youngest daughter, Austen, who has Dravet syndrome. A year ago, I don’t think I would’ve had the nerve to…
“Mom, where is my friend? You know, the one who looks like my twin?” We were at the baseball practice of my 8-year-old son, Atlas, and my daughter Austen, who is 6 and has Dravet syndrome and autism, tugged on my jeans, clearly annoyed that her playmate wasn’t there…
When my 6-year-old daughter, Austen, was born, she seemed completely “normal” for the first five months of her life. She was born without complications and hit her developmental milestones according to a normal schedule. Like any mother, I dreamed of the things she would grow up to do, including…
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, doctor appointments, and phone calls to her pediatrician. We even switched hospitals when her original neurologist…
“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 this year, I have mostly been his stay-at-home mom. I received my bachelor’s in elementary…
“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 her 6-year-old sister, who has Dravet syndrome, was fine. It turns out that…
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