The Journey to the Truth
— Meagan Earley

I made a deal with my late daughter, Austen, when she was just 1 year old. The deal was that she’d make it to 10. That was because she had Dravet syndrome, and statistics showed that most deaths attributed to the syndrome occur before a child is 10…

I’ve known since I was a small child that whenever I pass, I want to go to a specific cemetery. It sounds odd, I know, but five generations of family ahead of me have gone into that same plot of land. Imagining joining them as part of the sixth generation…

When my daughter Austen passed away last summer, I honestly believed I wouldn’t be able to survive the pain. She was 9 years old, and I’d spent eight and a half of those years focused on keeping her healthy and alive through her Dravet syndrome. The pain was all-consuming;…

Yearbooks are like mirrors that give us a glimpse into the past. As a teacher, I love looking at them. During the school year, I’m so focused on the daily ins and outs of teaching my students that I often feel like I’m on autopilot. Sitting down with that year’s…

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…

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…