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.

On Becoming the Proudest of Soccer Moms

When my 6-year-old daughter, Austen, was born, she seemed completely “normal” for the first five months of her life. She was born without complications and hit her developmental milestones according to a normal schedule. Like any mother, I dreamed of the things she would grow up to do, including…

Our Dravet Syndrome Journey Comes Full Circle

When my daughter Austen, now 6, started having seizures years ago due to Dravet syndrome, it took us over six months to receive a diagnosis. That period was a whirlwind of seizures, hospitalizations, doctor appointments, and phone calls to her pediatrician. We even switched hospitals when her original neurologist…

Learning to Navigate Our New Normal

“Mom, I’ve decided I don’t want you working anymore. Now I have to go to school even earlier, and I get home even later.” Those are the words of my 8-year-old son, Atlas. Until this year, I have mostly been his stay-at-home mom. I received my bachelor’s in elementary…

The Anxieties of a Dravet Syndrome Sibling

“Mom, is Austen OK?” Addi, my 13-year-old daughter, was on the school bus headed home last week when she sent me the text. I was confused but assured her that her 6-year-old sister, who has Dravet syndrome, was fine. It turns out that…

We Are Heading Back to School — Again

I sent my two youngest kids back to school this month for the first time since the COVID-19 pandemic began. I wasn’t too worried about my son, Atlas, 8. He has thrived through two years of home schooling. He’s a grade ahead in math and a great reader, too, although…

We Got COVID-19 After Sending Our Kids Back to School

I took all three of my children out of school on March 13, 2020, the day before our local school district decided to switch to remote learning because of the COVID-19 pandemic. This was because our youngest daughter, Austen, 6, has Dravet syndrome. In the past, something as seemingly minor…

Thank You, Colorado

In June 2016, I packed up my home in Texas, my three children, and my entire life, and moved 752 miles away to Colorado in search of hope. Hope that we could delay putting my youngest daughter, Austen, on another serious anti-epileptic drug to treat her worsening seizures, caused by…