Last weekend, something happened that hasn’t happened since I became a parent over 13 years ago: I had an entire weekend to myself. There were no kids events to go to, no errands to run, and no husband or kids yelling at me or…
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.
Featured Post
Tomorrow would be Austen’s 11th birthday. When I found out I was pregnant with Austen, I wasn’t sure if I was going to have another home birth or not. I loved my home birth experience with Atlas in the fall of 2013, but we were stationed in Hawaii at the…
Because I started home-schooling my kids late last July, we are quickly approaching the end of our school year. Throughout the year, I have been riddled with fear about my capability of home-schooling three children and giving Austen, my 5-year-old with Dravet syndrome,…
From the outside looking in, the lives our family must seem chaotic. OK, our lives are chaotic. But isn’t that true for all parents with multiple children? The only things that make our lives different are a couple of diagnoses, a few seizures, and several medications. Strangers…
Today something rare happened in our home. My husband woke up before me and quietly ushered our 5-year-old daughter, Austen, into the living room so I could sleep in. I had just started to drift back into dreamland when I heard the door open again. Only this time,…
As of March 25, my husband and I are as immune as can be to COVID-19, as we’re two weeks past our second dose of the vaccine. It’s been a little over a year since the pandemic started, and what a…
I have two daughters. Each time the doctor told me I was having a girl, my heart skipped a beat in excitement. I never had a sister, and the thought of having a tiny human looking up to me brought both a sense of anticipation and…
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…
Recent Posts
- Caring for a child with Dravet syndrome is a marathon, not a sprint
- Patient-derived Dravet models may help study disease variability
- The importance of a peer community for my daughter with Dravet syndrome
- Dravet awareness month campaign turns purple actions into progress
- Why my 10-year-old daughter still sleeps in my bed