The Journey to the Truth – a Column by Meagan Cheney

When it comes to our journey with Dravet syndrome, my husband has always been the optimist among us. When our daughter Austen’s seizures kept coming in those first few months, my husband held out hope that they would somehow miraculously stop on their own.

I want to be a domestic goddess and have a home that’s pristinely clean whenever you open the door. I want a home that’s company-ready, whether you come through the door at 6 a.m. or 6 p.m. I want a home that screams, “The children…

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…

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…

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.