Columns

The preteen years are stressful for many parents. Bodies are changing, hormones are raging, and emotions run high, resulting in that preteen angst we all love. Between the elementary and teen years, kids are trying to figure out who they are and who they will become. As a parent, I…

This week, I cried in an individualized education program (IEP) meeting. I didn’t even know what an IEP meeting was until I sat in a room full of education professionals the year my daughter Avery started preschool. An IEP was necessary for Avery, who is now 10, due to…

Fourteen months, or 425 days. That’s how long my daughter was free from status and tonic-clonic seizures. For most people, that doesn’t mean anything, but for someone with Dravet syndrome, seizure freedom of that length means everything. For over a year, my 10-year-old, Avery, didn’t experience any seizure…

Halloween was my favorite holiday when I was a child. My grandparents threw a big party every year for their friends and family — with music, food, and games like horseshoes and pool. We would all dress up, run around like maniacs on sugar rushes, and end the night with…

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…