Learning to Let Go and Share the Dravet Syndrome Burden
For the past five years, I have been with my daughter Austen during every doctor’s appointment, blood draw, and medical test and procedure. Every time she’s walked through the doors…
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 moreFor the past five years, I have been with my daughter Austen during every doctor’s appointment, blood draw, and medical test and procedure. Every time she’s walked through the doors…
I am often asked why I write about my life so much. Or if I get tired of sharing the daily ins and outs of our family life. I guess…
For parents of a young child with a debilitating condition, sometimes even the most common childhood comments can make the heart skip a beat. Last week, my daughter Austen ran…
“Remember, nobody likes a brat.” I think I might have started a column with that same statement before, but the reason I do so is because it’s one of the…
Regardless of how long my daughter Austen goes without a seizure, the risk is always there. Without a cure for Dravet syndrome, that risk will always exist in the shadows, lurking and hiding, and…
For so long, we avoided many things because of my daughter Austen’s seizures. We didn’t go on play dates, or to indoor playgrounds. We barely even went to…
Author and relationship blogger Fawn Weaver said, “A great marriage isn’t something that just happens; it’s something that must be created.” According to the American Psychological Association, about 40-50% of marriages in…
When it comes to our journey with Dravet syndrome, my husband has always been the optimist among us. When our daughter Austen’s seizures kept coming in those first few months,…
I want to be a domestic goddess and have a home that’s pristinely clean whenever you open the door. I want a home that’s company-ready, whether you come through…
As a special needs mom, I know what it’s like for my child to feel left out. Even when we are invited to birthday parties, we often find ourselves declining.
Today, a memory popped up on my Facebook timeline from five years ago. It was a video of our little baby Austen, then 6 months old, bouncing in her jumper. I was…
For my husband and me, Christmas came early this year. Today, Dec. 22, marks four months of seizure freedom for our daughter, Austen. The only time she has ever gone this long…
Get regular updates to your inbox.