My parents have always been doting grandparents. Since my oldest daughter was born 12 years ago, it has felt like Target’s toy department exploded in my home. Almost anything my kids have wanted, they have gotten — within reason, of course. Addi was 2 when…
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…

Austen was 8 months old when we adopted Milo. Her seizures had already started, but her diagnosis was still a good four months into the future. We were on a journey that seemed to be hazed in fog at that point, and Milo…
Like many families around the world, my family is home schooling this year. My degree might be in elementary education, but even so, I’m a bit intimidated by the idea of teaching three different grades simultaneously. Add in that one child is special needs, and there was some…
This week, an all-too-familiar scene greeted me when I logged onto Facebook: a teenage boy smiling at the camera without a care in the world, and a message above his photo letting me know of another warrior gone too soon. I can’t tell you how many…
Last week, my daughter Austen and I were doing our normal before-bed ritual. We cuddle up together on the couch, and she plays on my phone while I catch up on an episode of whatever I’m binge-watching at the time. This is our special time, now that she…
Being a special needs parent is the hardest job I’ve ever had. I constantly feel like I am not doing enough to help my child. I not only feel guilty every time something goes wrong, I also feel guilty when things go right. A few months ago, while…
The world of special needs parenting isn’t necessarily a club any of us signed up for. It’s one we were thrust into and had to accept to simply survive. When you think about it though, an initiation into the special needs siblings club might be even…
It was the summer of 2016, and I was trying my best to finish my grocery shopping with three kids in tow. My list was short and the store was slow that morning. It should have been a fast and easy trip. But the calming music dancing through…
The Journey to the Truth
When my daughter, Austen, first started seizing at 5 months old, we were told that it was probably just febrile seizures … even when she went into a status seizure two days later, had to have a code blue called, and was transferred to a bigger hospital with…
“It’s probably just a febrile seizure. It happens to one in 25 children, and 60% of those kids will never have another one. She’s going to be fine.” Those were the words spoken to me by the emergency room doctor, a…
I was alone in the car on a hot May day. My daughter, Austen, who had just turned 1 and was baptized the previous day, slept in her car seat while my husband ran into the store. Then the phone rang. “Her test…
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