Columns

“Potentially.” “Promising.” “Could.” “Might.” “Possibility.” These are some of my least favorite words. Why? Because they and an assortment of others turn up routinely in practically every press release about some incremental advance in Rett syndrome research. “This study raises the possibility that …” goes one. “The findings…

Spring fundraising appeals for Rett syndrome causes have been turning up in the inbox and the Facebook feed, as they do every year at this time. Girl Power 2 Cure, a worthy organization, says there’s still time for us to “give a dollar a day in May.” The…

Before our late daughter, Cammy, was diagnosed with Rett syndrome shortly before her second birthday, she was already receiving services through our state’s early intervention program. For 10 months — from 12 months old to 22 months old — her days were filled with appointments for physical therapy,…

I’ve been taking a lot of flak for letting someone drape a giant snake around my daughter Abby a few weeks ago. And I’ll admit that, as part of my ongoing search for a therapeutic breakthrough for Abby, who has Rett syndrome, the experiment was a failure. The goat…

Handprint art. Construction paper flowers. Homemade cards. Acrostic poems spelling out M-O-M. These are the images that come to mind when I think of Mother’s Day. For many years, my oldest daughter, Cammy, proudly gave me these treasures. Because she had Rett syndrome, Cammy was never able to…

Twenty-four years ago this week, my daughter Abby sat 5 feet from one of the world’s most famous movie stars in a hearing room in Washington, D.C., as print and television journalists recorded the biggest media circus ever staged on behalf of Abby’s disability, Rett syndrome. The movie star…

Practically every parent of a child with a visible disability has a story about the time someone looked crossways at the kid in the grocery store or made a thoughtless or downright hateful comment. This story is the opposite of those. My wife, Donna, and I don’t take many…

There is one month of school left. For many families, that means countdowns, celebrations, and the final stretch of a busy school year. For me, it is a quiet reminder of all the moments my late daughter, Cammy, should be experiencing right now. Some of these milestones are exciting,…

It was just an overpriced Broadway bauble, so why has its demise made me so glum? Yeah, I broke our “Big River” coffee mug. I was putting it in the dishwasher yesterday and bumped it against the rack. The handle broke off in multiple pieces. We got the mug nine…

So much of human interaction is based on asking a question and getting a response. “How are you today?” “Did you have fun on your vacation?” “How’s the job going?” I’m still asking my daughter Abby questions every day, though she hasn’t answered one in the 29 years she’s been…