The Journey to the Truth – a Column by Meagan Cheney

Grief is weird. One day you seem perfectly fine, but the next day the pain is so intense that you don’t think you can physically breathe without your loved one. As a parent, I can’t imagine going through any worse kind of pain than what I’ve felt since losing Austen,…

Within days of my daughter Austen’s accident last summer, I began to think I’d never be able to live in our old house again. A week or so after she died, I went back, just to make sure. Even though I felt at peace on the property, my feelings were…

My daughter Austen, who passed away last summer at age 9 from complications of Dravet syndrome, wasn’t attached to many things. It may have been related to her autism, but she just wasn’t that interested in many physical objects. But the few items she did care for, she held on…

Losing my daughter Austen, who had Dravet syndrome, was the hardest thing I’ve ever gone through in my life. There’s no way around that. It doesn’t matter if you know your child is sick, if you know there’s a chance that they’ll die, or if you’ve experienced death on…

Back-to-school season is usually filled with wonder and excitement. New clothes, new books, and even the smell of new pencils make me blissfully happy. As a teacher, going back to school with my kids every year adds another layer of anticipation. At least, it did until this school year,…

In February 2016, I learned about Dravet syndrome from a Google search. My youngest daughter, Austen, then only 8 months old, had been having seizures for the past three months and we couldn’t figure out why. We’d been informed that two-thirds of people with epilepsy never know what caused…

For a large part of her life, Austen, my 9-year-old with Dravet syndrome, didn’t seem aware of the limits that seizures brought to her life. She was fearless — so much so that we had to address her lack of self-preservation skills in applied behavior analysis therapy.

I’ve never liked being away from my children. Even before Austen, my 9-year-old with Dravet syndrome, got sick, I didn’t spend a lot of time away from my kids. Being a mom is one of my greatest joys in life. Before my divorce, in fact, the longest I’d ever…

Every year as the calendar flips to June, marking the start of Dravet Syndrome Awareness Month, I find myself reflecting on what it means to be the parent of a child with the disease. Austen, my 9-year-old daughter, was diagnosed with Dravet syndrome shortly after her first…

The last few weeks have been a whirlwind. Austen, my daughter with Dravet syndrome, turned 9 years old. Eleven days later, we observed the eighth anniversary of her Dravet syndrome diagnosis. I still remember the sensation of falling I experienced during that phone call. I had mixed…