Columns

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…

Regardless of how long my daughter Austen goes without a seizure, the risk is always there. Without a cure for Dravet syndrome, that risk will always exist in the shadows, lurking and hiding, and waiting for the perfect circumstances to jump out and wreck our day. One hundred…

For so long, we avoided many things because of my daughter Austen’s seizures. We didn’t go on play dates, or to indoor playgrounds. We barely even went to friends’ birthday parties. I was always scared that she would get…