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…
Columns
“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…
My last job at The New York Times, where I worked in various writing and editing positions for almost 30 years before retiring in 2023, was as an obituary writer. Almost all of the hundreds of obituaries I wrote were assigned to me by editors, who reviewed the daily list…
My late daughter, Cammy, was diagnosed with Rett syndrome at just 20 months old in 2011. From that moment on, advocacy became part of our everyday life. Cammy’s journey taught our family not only about the challenges that people with disabilities face, but also about the importance of compassion,…
Our daughter, Abby, who has Rett syndrome, just turned 29. It’s the kind of number that makes a parent think, “Can that possibly be right?” And, “Good golly, we’ve been doing this for a long time.” Abby may or may not care about birthdays, but if she does, she’s…
For more than a week now, our daughter, Abby, has been fighting off respiratory syncytial virus, or RSV, a rapacious bug that invades the respiratory tract. I gave it to her. It’s hard to watch her struggling with the deep cough, the phlegm, the runny nose. Abby, who is 29…
Recent Posts
- Extra attention from a color avalanche gave my daughter a reason to smile
- What it’s like becoming the point person of a club no mother wants to join
- Case of woman, 63, shows approved Rett therapy may benefit older adults
- ‘G’ is for grandparents: Remembering how my parents embraced my child
- Mouse study offers clues to Rett syndrome mutation differences
- Feeling adrift following the end of Camp Communicate
- Parkinson’s drug shows potential for Rett breathing problems in mice
- A casual chat about Rett syndrome, then a surprise in the mail
- Blocking cellular stress protein may help ease Rett symptoms
- My daughter with Rett syndrome will never ride Medusa — and neither will I