Columns

When my daughter Avery joined the youth cheer team this year, I wasn’t sure what to expect. Because of her developmental disability, speech delay, and the many seizure triggers brought on by Dravet syndrome, her participation in youth sports has been almost nonexistent. When we walked into the cheerleading…

Note: This column describes the author’s own thoughts about various seizure medications and therapies. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Early on, when Avery, my daughter with Dravet syndrome, started having seizures, I was scared of…

My daughter Austen had always wanted to see the ocean and was jealous that her older siblings had gotten to live in Hawaii while she hadn’t. It didn’t matter that her brother, Atlas, was only 8 months old when we left the island; Austen still felt that it was unfair…

A couple years ago, I was talking with several other parents when the topic of parenting “sweet spots” came up. They all had kids similar in age to mine, with one difference: My youngest daughter, Avery, has Dravet syndrome. These parents talked about entering the season when their kids…

When my daughter began having seizures at 3 months old, I immediately went into fight mode. At that time, Avery was a perfectly healthy and typically developing baby. I thought there had to be a reason these seizures were happening, and once we figured that out, we could find…

Recently, a back-to-school photo of my late daughter, Austen, appeared in my Facebook memories. It was from our homeschool years, and she chose a pajama day to kick off first grade. Clad in pink and white striped pajamas with large pink bows in her pigtails, she smiled at the camera…

My 10-year-old daughter had an absolute meltdown when it came time to leave a family birthday party the other day. I tried to bribe her. I got down on the floor beside her to reason with her. I reminded her that there could be consequences if she didn’t listen to…

My 10-year-old daughter, Avery, has a rare, catastrophic, and lifelong form of epilepsy called Dravet syndrome. Recently, I have expressed the difficult emotions and experiences that accompany this reality. These hard things are all true, but there is another truth, too: She makes me smile every single day. Some…

When we’re at home, Avery is just Avery. But when we enter the world, go to school, or attend organized activities where age-appropriate social interactions and behaviors are the norm, Avery becomes someone who exists outside the norm. Avery is my 10-year-old daughter who has Dravet syndrome. Because of…

School started this week for my 10-year-old daughter, Avery. In many ways, Avery is like most kids — she is social, values friendship, and wants to be accepted by her peers. But in other ways, she is very much unlike her peers. Avery has Dravet syndrome, a rare, severe,…