As a special needs mom, I know what it’s like for my child to feel left out. Even when we are invited to birthday parties, we often find ourselves declining. That might seem a bit self-deprecating, but so many fears come with those invitations. What if…
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…

Today, a memory popped up on my Facebook timeline from five years ago. It was a video of our little baby Austen, then 6 months old, bouncing in her jumper. I was trying to get her to say “Mama,” but she kept saying “Dada.” Her words were in…
For my husband and me, Christmas came early this year. Today, Dec. 22, marks four months of seizure freedom for our daughter, Austen. The only time she has ever gone this long without a seizure was before her first seizure at 5 months…
When I started this job, I really thought I would be writing about seizures each week. So, I find it kind of baffling that I barely write about them at all anymore. But the biggest “symptom” of Dravet syndrome we are…
Tantrums in the grocery store when too many people are around. Biting friends and siblings when they don’t want to share their toys right away. Throwing herself on the ground when someone tells her no, or even not right now.
I come from a diverse Christian background. My mom is Mormon, while my dad was raised Episcopalian. I’ve dabbled with nondenominational, Baptist, and Pentecostal churches in my own search for what was right for me. When my daughter, Austen, was 4 months old — just three…
Thanksgiving is one of my top two favorite holidays. But when I was a kid, my family did something at the Thanksgiving dinner table that I absolutely hated. It was a tradition many American families have: going around one by one to say what you are thankful for…
When Special Needs Moms Get Sick
Moms don’t get sick days. I remember my mom telling me that one day when I called in desperation. The Army had recently moved us to California for my husband’s training, the first time I had ever been away from my family long-term.
I have a confession. I used to hate Epilepsy Awareness Month. Maybe it’s because our daughter Austen’s first seizure happened in November, so I’m a little bitter about the month in general. Or maybe it’s because I’m a naturally introverted person,…
“Look at the sky, Mom, it’s orange. That means it’s Halloween!” Austen was right, the sky was a very beautiful orange that morning. But I gently tried to explain to her that it wasn’t yet Halloween. It was no use. Within minutes, we were in full…
Today a mom asked me if I thought she should try Fintepla (fenfluramine) for her child. They had just started a new medication and weren’t seeing any results. I told her I thought it was worth the try, but not to take Austen’s good experience as proof…
I saw a meme a while back that explains what would happen if a special needs mom fell into a hole and could not get out. Many people come across her in this hole. A family member asks her if it is really as bad…
Recent Posts
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- 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