An Excess of Lemons
— Neil Genzlinger

My daughter Abby, who has Rett syndrome, won’t sit through a lot of movies, but one she has watched a zillion times is “Harry Potter and the Sorcerer’s Stone,” the first Harry Potter film, which came out in 2001, when Abby was 4. My wife and I think she…

There aren’t many doctors who specialize in Rett syndrome, my daughter Abby’s disability, and so earlier this year when we got word that Dr. Sasha was retiring, it was quite a blow to our household. Not only had she long been a steady hand in Abby’s caregiving circle, but…

The Trenton Thunder’s baseball season opened the other day, though only a hardcore few noticed. Like most households in New Jersey, ours is fairly indifferent to the Thunder. And yet before the summer is over we will make several trips to see the team play, because watching a baseball game…

“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…

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…

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…

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…

Winter seems to be over at last here in New Jersey. Rats. Abby and I never did get to go swimming in the snow. Twelve years ago, my wife, Donna, and I realized that our daughter Abby, who has Rett syndrome, was a year away from turning 18, which…