The Journey to the Truth – a Column by Meagan Cheney

It’s been a long time since I’ve written — too long. But I have some amazing news to share. When Austen, my 7-year-old with Dravet syndrome, started having seizures, it put us on a roller coaster of doctor appointments, hospitalizations, new medications, and hoping against all hope that somehow…

Later today, after writing this column, I will leave for a five-day vacation without my kids. My mom and dad will be taking care of my three children, including my youngest daughter, Austen, who has Dravet syndrome. A year ago, I don’t think I would’ve had the nerve to…

“Mom, where is my friend? You know, the one who looks like my twin?” We were at the baseball practice of my 8-year-old son, Atlas, and my daughter Austen, who is 6 and has Dravet syndrome and autism, tugged on my jeans, clearly annoyed that her playmate wasn’t there…

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…

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…

“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…

“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…

I sent my two youngest children back to school earlier this month. While their oldest sister, Addi, 13, returned to school in November, neither my son, Atlas, 8, nor his younger sister, Austen, 6, had set foot in a classroom in 22 months. We took…

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…

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…