The Journey to the Truth
— Meagan Earley

For the past five years, I have been with my daughter Austen during every doctor’s appointment, blood draw, and medical test and procedure. Every time she’s walked through the doors of the doctor’s office or hospital, she’s been holding my hand. Every time she’s cried over…

I am often asked why I write about my life so much. Or if I get tired of sharing the daily ins and outs of our family life.  I guess I see where people are coming from. In a life with neurotypical children, writing about your…

For parents of a young child with a debilitating condition, sometimes even the most common childhood comments can make the heart skip a beat. Last week, my daughter Austen ran up excitedly and exclaimed, “Mama, guess what I’m going to be when I grow up?”…

“Remember, nobody likes a brat.” I think I might have started a column with that same statement before, but the reason I do so is because it’s one of the most memorable things I’ve been told during our family’s journey with Dravet syndrome…

Regardless of how long my daughter Austen goes without a seizure, the risk is always there. Without a cure for Dravet syndrome, that risk will always exist in the shadows, lurking and hiding, and waiting for the perfect circumstances to jump out and wreck our day. One hundred…

For so long, we avoided many things because of my daughter Austen’s seizures. We didn’t go on play dates, or to indoor playgrounds. We barely even went to friends’ birthday parties. I was always scared that she would get…

Author and relationship blogger Fawn Weaver said, “A great marriage isn’t something that just happens; it’s something that must be created.” According to the American Psychological Association, about 40-50% of marriages in the U.S. end in divorce. The rates are even higher among parents of special needs kids,…

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…