My family moved to Colorado when Austen, my daughter who last summer passed away at age 9 from complications of Dravet syndrome, was just a year old. We moved to get her access to medical cannabis there, and while I don’t regret that choice, it was hard to take…
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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A few months after my daughter Austen passed away due to complications of Dravet syndrome, we acquired a new dog. My husband, Dakota, and I had begun talking about how both of our families have traditions of naming animals after loved ones who have passed on. His aunt and…
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 grandmother and father, respectively. So when I unexpectedly found myself pregnant with our third child, one…
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 same DNA or not, are not carbon copies of one another. So even though I enjoyed…
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 Dravet syndrome. I was prepared for Halloween, Christmas, and her birthday to rip the wound…
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 can’t imagine going through any worse kind of pain than what I’ve felt since losing Austen,…
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, just to make sure. Even though I felt at peace on the property, my feelings were…
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 that interested in many physical objects. But the few items she did care for, she held on…
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 sick, if you know there’s a chance that they’ll die, or if you’ve experienced death on…
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 kids every year adds another layer of anticipation. At least, it did until this school year,…
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 figure out why. We’d been informed that two-thirds of people with epilepsy never know what caused…
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 that we had to address her lack of self-preservation skills in applied behavior analysis therapy.
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 one of my greatest joys in life. Before my divorce, in fact, the longest I’d ever…
Recent Posts
- Her name is Sister Bear Potato, and she is exactly what we needed
- So little time has passed since my daughter’s death; only a lifetime ago
- Holding on to memories has helped me get through the hard days
- I didn’t stop being a mom when my child with Dravet syndrome died
- I wouldn’t change a single thing about my daughter’s story