The Journey to the Truth – a Column by Meagan Cheney

Meagan joined BioNews in 2020 as a columnist for Dravet Syndrome News. Before joining the BioNews team Meagan was a freelance writer for six years. She also runs her own blog www.athomewithmeagan.com, where she writes about homemaking and parenting. Meagan lives in Colorado with her husband and three children. Her youngest daughter, Austen, was diagnosed with Dravet syndrome in May 2016 at 1 year old.

We Experienced a COVID-19 Scare

Over the last year, we have pretty much kept our family in a constant state of quarantine, fearing what would happen if Austen, our 6-year-old with Dravet syndrome, caught the coronavirus. When something as small as the adenovirus sends her to the PICU, the idea of the COVID-19 virus…

Why Austen Is Not on the Ketogenic Diet for Seizures

“Have you tried the ketogenic diet?” I’ve been asked this question more times than I can count. When people learn that we tried cannabis therapy with Austen, my 6-year-old with Dravet syndrome, before medications like Onfi (clobazam) and Fintepla (fenfluramine), they always want to know if we have tried…

We Take Another Step Toward ‘Normal’

Ever since I have become a mom, I have always chosen to safely co-sleep with my babies until they were weaned. It might not be what works for every family, but for my family, it was the best choice. My oldest daughter, Addisen, 13, weaned when she was 2…

Our Zoo Trip Was 17 Months in the Making

This past week, we reached another milestone in the baby steps we are taking to return to our normal lives amid the pandemic. And the experience was amazing. Since we moved to Colorado in June 2016, we have maintained our membership to the Cheyenne Mountain Zoo in Colorado Springs. As…

To Home-school, or Not to Home-school, That Is the Question

Another year brings another debate with myself: to home-school next year, or not to home-school next year? I started our home-schooling journey in 2013 when my oldest daughter, Addisen, was 5. I home-schooled her until halfway through third grade, when we found a school here in Colorado we liked. For…

Helping Austen to Understand the Finality of Death

This past week our family suffered a tragic loss. Our rabbit, Susie Stew, whom we had adopted roughly 15 months earlier, passed away in her sleep. Between the time our neighbors had her (at least the entire three years we lived next to them) and the time we had her,…

The Perfect Day I Once Thought to Be Unimaginable

I’m trying something new this summer: A slow, intentional way of life. I dream of mornings that aren’t rushed or chaotic, and evenings when I’m able to get the kids bathed and in bed without either of us breaking down in tears or shouting. I’m not delusional. I know my…

‘I’m Sorry, She Has Autism’

Autism is a secondary diagnosis for my 6-year-old daughter, Austen. Her primary diagnosis is Dravet syndrome, which causes her to have intractable epilepsy, weak muscle tone, and many other symptoms. I’m not sure if her autism is a stand-alone diagnosis, and if she would have it whether or…