Columns

My Daughter Joins the 6-month Club, and Other Good News

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…

On Becoming the Proudest of Soccer Moms

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…

Our Dravet Syndrome Journey Comes Full Circle

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…

Learning to Navigate Our New Normal

“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…

The Anxieties of a Dravet Syndrome Sibling

“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…

We Are Heading Back to School — Again

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…

We Got COVID-19 After Sending Our Kids Back to School

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…