I’ve been on the lookout for the look that says, ‘Enough is enough’

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 and has Rett syndrome, can’t clear her lungs or throat by blowing her nose or spitting goo out, as others can. 

For that reason, lung infections are particularly dangerous for people with Rett syndrome. Two years ago, Abby spent 11 days in the hospital, where she almost died, after contracting aspiration pneumonia. I’m hoping she doesn’t end up back in the same hospital because of RSV. I logged a few days there earlier this month myself because of it.

It all started when I went up from New Jersey to Maine to provide child care for Abby’s older sister and her husband, whose 2-year-old, Rory, is our first grandchild. Her mom and dad had a particularly busy workweek ahead of them, and two days after I arrived, the day care center shut down because four people there had come down with RSV. Rory brought it home and gave it to me, and when I got back to New Jersey, I gave it to Abby. I hadn’t gotten the RSV vaccine because the guidelines say ages 75 and up, and I’m not quite there yet.

Recommended Reading

February 18, 2026 News by Steve Bryson, PhD

Rett syndrome linked to early disruptions in brain cell maturation

From ‘Enough is enough’ to ‘Hell, no’

Medical websites say RSV affects everybody differently. For some, it’s the equivalent of a cold. For others, like me, it’s potentially fatal. Now that I’ve dodged the bullet, I’ve been watching Abby, hoping it will be relatively mild for her. But I’m also on the lookout for what I call the “enough is enough” look.

It’s a look Abby gets sometimes when she’s having a bad stretch — too much dystonia, some exhausting illness, or (years ago) a back surgery that went awry. We saw the look quite a bit during that 11-day hospitalization two years ago. Abby doesn’t communicate well, although she has an eye-gaze computer and other devices, so I may be reading too much into it, but the look seems to be saying, “It’s not worth it. I want to give up.”

We try to talk her through those moments, encourage her, and tell her to keep fighting. Maybe that helps, or maybe she just taps into her own internal reservoir of strength. During her hospitalization in 2024, she had stopped eating or drinking, and by the ninth day, a doctor suggested it was time to either put in a feeding tube or put her on comfort care. (Unlike many people with Rett syndrome, Abby still eats by mouth.)

Maybe saying it right in front of Abby, as if she couldn’t hear or understand, flipped a switch in her. That sort of thing has always irked us, too, but out went the “enough is enough” look and in came the “Comfort care? Hell, no” look. Two days later, she was home, sitting in her usual spot on the couch and eating two double cheeseburgers from McDonald’s.

I’ve seen “enough is enough” a couple of times during her recent battle with RSV, but not for a few days, so I think she’s past the worst of it and won’t end up in the hospital. I hope so; the kid deserves a break.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.