Columns

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…

“How do you tell your child their sibling is going to die?” That is a question I never expected to Google. In early November 2023, our oldest daughter, Cammy, was on a BiPAP machine in the pediatric intensive care unit (PICU) when she stopped breathing. The medical team rushed…

Note: This column describes death and dying and may be triggering for some readers.  Dec. 13, 2023, 4 a.m. I woke up around 4:17 a.m. to the sound of machines singing different pitches of beeps. I’d been in and out of sleep for the five hours I was actually able…

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…

My daughter Abby has probably scored more runs than any player in the history of her baseball league. She’s also never won a game. She’ll continue to add to those impressive statistics next weekend, when the Miracle League of Mercer County, New Jersey, opens its spring season and…

The service organization Best Buddies International has had a campaign going this month to “End the R-Word,” as the subject line in an email it sent out a few weeks ago put it. Best Buddies, which creates social and job opportunities for people with intellectual disabilities, has been conducting this…