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…
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 have always loved dogs, and for most of my life, I’ve had one by my side. There’s just something about their unconditional love that feeds my soul. My children will get mad at me if they don’t get their way, but my dogs are happy as long as I…

‘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…
Today something rare happened in our home. My husband woke up before me and quietly ushered our 5-year-old daughter, Austen, into the living room so I could sleep in. I had just started to drift back into dreamland when I heard the door open again. Only this time,…
As of March 25, my husband and I are as immune as can be to COVID-19, as we’re two weeks past our second dose of the vaccine. It’s been a little over a year since the pandemic started, and what a…
I have two daughters. Each time the doctor told me I was having a girl, my heart skipped a beat in excitement. I never had a sister, and the thought of having a tiny human looking up to me brought both a sense of anticipation and…
Recent Posts
- Mouse study links brain’s thermostat to sleep issues in Dravet
- New study links heatwaves to increased seizures in Dravet syndrome
- Dravet patients face heavy seizure burden despite medications: Study
- My late daughter’s dog dealt with grief alongside our family
- Dravet behavior, social issues emerge in toddlerhood, study finds
- A winter storm reminds me of magical snow days with Austen
- Online parent coaching helps Dravet kids build independence
- Cell study offers new clues to Dravet seizure triggers
- Epidiolex reduces seizures in rare Dravet syndrome cases: Study
- Faster-than-expected enrollment seen in trial testing zorevunersen for Dravet