The emotional return of a beloved dress
None of my children are exactly alike, and I like it that way. Each has an individual, vibrant personality; while one might like theater, another favors video games. Siblings, whether they share 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.
Austen, my 9-year-old who passed away from Dravet syndrome last summer, was the only one of my children I named. Addisen, her 17-year-old sister, and Atlas, her 11-year-old brother, were named by their…
Read moreNone of my children are exactly alike, and I like it that way. Each has an individual, vibrant personality; while one might like theater, another favors video games. Siblings, whether they share the…
The first year after losing a loved one is filled with many firsts. I anticipated many of these moments being hard after Austen, my 9-year-old daughter, passed away last summer due to complications of…
Grief is weird. One day you seem perfectly fine, but the next day the pain is so intense that you don’t think you can physically breathe without your loved one. As a parent, I…
Within days of my daughter Austen’s accident last summer, I began to think I’d never be able to live in our old house again. A week or so after she died, I went back,…
My daughter Austen, who passed away last summer at age 9 from complications of Dravet syndrome, wasn’t attached to many things. It may have been related to her autism, but she just wasn’t…
Losing my daughter Austen, who had Dravet syndrome, was the hardest thing I’ve ever gone through in my life. There’s no way around that. It doesn’t matter if you know your child is…
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…
In February 2016, I learned about Dravet syndrome from a Google search. My youngest daughter, Austen, then only 8 months old, had been having seizures for the past three months and we couldn’t…
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…
I’ve never liked being away from my children. Even before Austen, my 9-year-old with Dravet syndrome, got sick, I didn’t spend a lot of time away from my kids. Being a mom is…
Every year as the calendar flips to June, marking the start of Dravet Syndrome Awareness Month, I find myself reflecting on what it means to be the parent of a child with the…
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