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 – a Column by Meagan Cheney
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…
Recent Posts
- Dravet patients face heavy seizure burden despite medications: Study
- My late daughter’s dog dealt with grief alongside our family
- Dravet behavior, social issues emerge in toddlerhood, study finds
- A winter storm reminds me of magical snow days with Austen
- Online parent coaching helps Dravet kids build independence
- Cell study offers new clues to Dravet seizure triggers
- Epidiolex reduces seizures in rare Dravet syndrome cases: Study
- Faster-than-expected enrollment seen in trial testing zorevunersen for Dravet
- The little lost journal that brings back memories of our Dravet journey
- FDA grants breakthrough status to new gene therapy for Dravet syndrome