The Journey to the Truth
— Meagan Earley

Jay-Z once said, “Don’t ever go with the flow. Be the flow.” And while I love Hov and his music as much as any self-respecting ’90s kid, that advice doesn’t always work when your child has special needs. Just before Christmas break, we made the decision to move…

Not long ago, I wrote a column about how Austen, my 7-year-old daughter with Dravet syndrome, was doing in her new school. She’s gone through a lot of changes in the past year, including her parents splitting up and a move to a new state. These changes would…

Back in November, I wrote about my 7-year-old daughter’s great accomplishment. Austen, who lives with Dravet syndrome, had set a new seizure-free record that seemed to be holding strong. But as it did last March, the flu hit our household in early December. It hit Atlas, Austen’s 9-year-old…

When Austen, my 7-year-old daughter with Dravet syndrome, was born, I didn’t have many things in her life planned out yet. I didn’t know what school she would go to, what sports I would put her in, or what preschool she might attend one day. I’m just not one…

In August, Austen, my 7-year-old daughter with Dravet syndrome, started a new school for the second time this year. When we moved to Texas from Colorado last winter, I put my children into the schools in our district. But over the summer, I got a job teaching for…

For most of her life until now, my 7-year-old daughter, Austen, who has Dravet syndrome, held the same record for the number of days she’d gone without a seizure. Dravet syndrome is characterized by frequent seizures that are often resistant to treatment. Austen’s record was 178 days.

I just finished my first month as an official first-year teacher. There have been quite a few tears and even more smiles, along with hugs and meltdowns — by both my students and myself. But as I looked back on how it’s gone, I arrived at a pretty funny conclusion:…

Our family’s summer came to an end last week when Austen, my 7-year-old daughter with Dravet syndrome, and her siblings returned to school. It was a great summer, filled with swimming, exploring, and time for the kids to just be kids. This was intentional on my part; I didn’t…

It’s been a long time since I’ve written — too long. But I have some amazing news to share. When Austen, my 7-year-old with Dravet syndrome, started having seizures, it put us on a roller coaster of doctor appointments, hospitalizations, new medications, and hoping against all hope that somehow…

Later today, after writing this column, I will leave for a five-day vacation without my kids. My mom and dad will be taking care of my three children, including my youngest daughter, Austen, who has Dravet syndrome. A year ago, I don’t think I would’ve had the nerve to…

“Mom, where is my friend? You know, the one who looks like my twin?” We were at the baseball practice of my 8-year-old son, Atlas, and my daughter Austen, who is 6 and has Dravet syndrome and autism, tugged on my jeans, clearly annoyed that her playmate wasn’t there…

When my 6-year-old daughter, Austen, was born, she seemed completely “normal” for the first five months of her life. She was born without complications and hit her developmental milestones according to a normal schedule. Like any mother, I dreamed of the things she would grow up to do, including…