This past week, we reached another milestone in the baby steps we are taking to return to our normal lives amid the pandemic. And the experience was amazing. Since we moved to Colorado in June 2016, we have maintained our membership to the Cheyenne Mountain Zoo in Colorado Springs. As…
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.
I tend to second-guess myself. I’ve done it my entire life. But it got worse when I became a mom, and worse again when I became a mom to a special needs child. When your entire world is centered around keeping a child alive, it’s hard not to fixate on…

Another year brings another debate with myself: to home-school next year, or not to home-school next year? I started our home-schooling journey in 2013 when my oldest daughter, Addisen, was 5. I home-schooled her until halfway through third grade, when we found a school here in Colorado we liked. For…
This past week our family suffered a tragic loss. Our rabbit, Susie Stew, whom we had adopted roughly 15 months earlier, passed away in her sleep. Between the time our neighbors had her (at least the entire three years we lived next to them) and the time we had her,…
I’m trying something new this summer: A slow, intentional way of life. I dream of mornings that aren’t rushed or chaotic, and evenings when I’m able to get the kids bathed and in bed without either of us breaking down in tears or shouting. I’m not delusional. I know my…
‘I’m Sorry, She Has Autism’
Autism is a secondary diagnosis for my 6-year-old daughter, Austen. Her primary diagnosis is Dravet syndrome, which causes her to have intractable epilepsy, weak muscle tone, and many other symptoms. I’m not sure if her autism is a stand-alone diagnosis, and if she would have it whether or…
A few weeks ago, my daughter Austen turned 6 years old. It was an exciting day that she had been looking forward to for months. She wanted a unicorn birthday party, complete with a unicorn cake, unicorn decor, and…
Happy 6th Birthday, Austen!
Something crazy is happening this week. Somehow my daughter Austen, the baby who must have only been born yesterday, is turning 6 years old. I can’t let myself believe it, yet I must. This little girl has been a surprise from the moment I found…
I was a lucky kid growing up, and I knew it. Some might have felt bad for me because my parents were divorced, as were their parents. But all I saw was the abundance of love this afforded me. While many of my friends only…
If you ever meet my 5-year-old daughter, Austen, who has Dravet syndrome, there are two things you will come to know about her. First, she loves animals. You can find evidence of this in the fact that our dog, Milo, is her…
Last weekend, something happened that hasn’t happened since I became a parent over 13 years ago: I had an entire weekend to myself. There were no kids events to go to, no errands to run, and no husband or kids yelling at me or…
Because I started home-schooling my kids late last July, we are quickly approaching the end of our school year. Throughout the year, I have been riddled with fear about my capability of home-schooling three children and giving Austen, my 5-year-old with Dravet syndrome,…
From the outside looking in, the lives our family must seem chaotic. OK, our lives are chaotic. But isn’t that true for all parents with multiple children? The only things that make our lives different are a couple of diagnoses, a few seizures, and several medications. Strangers…
Recent Posts
- Altered brain support cells drive Dravet syndrome symptoms in mice
- I wouldn’t change a single thing about my daughter’s story
- New study links mitochondrial dysfunction to Dravet and other DEEs
- FDA, developer align on pivotal study of Dravet syndrome gene therapy ETX101
- Storing memories to teach future generations about our journey