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March 10, 2023, was the last time we would ever celebrate our late daughter Cammy‘s birthday with her. In my heart, I knew it would be, as complications of Rett syndrome were impacting her more and more. Cammy needed to be on supplementary oxygen at night, her profound…

Last fall, I purchased four tickets to see the hit musical “Hamilton” in Chicago in last December. My husband, Bill, and our youngest daughter, Ryan, had already seen the show in New York, but were happy to see it again with our oldest daughter, Cammy, and me. We…

For 14 years, we had known this day would come, but we couldn’t possibly have fully prepared for it. On Dec. 13, 2023, our beautiful daughter Cammy put her superhero cape on one last time. Cammy continued teaching us important lessons right to the very end, as she displayed…

I never imagined we’d be in the hospital for a second consecutive holiday, but we were. Our oldest daughter, Cammy, was admitted to the pediatric intensive care unit the day before Halloween. Now we’ve spent Thanksgiving in the hospital, too. But despite being here for a month, we…

On Oct. 29, Cammy, our 14-year-old daughter with Rett syndrome, went to bed with a cold. She was fatigued, had glassy eyes and mucus in her chest, and was coughing a little. We checked on her a few times during the night, but by 5 a.m., we knew…

A group of sloths is called a snuggle. A group of fish is a school. A group of birds is a flock. And a group of humans is a family or club. All of these individual animals are stronger together. My daughter Cammy’s high school mascot is…

Last weekend, my oldest daughter, 14-year-old Cammy, went to her first high school dance. Since she has Rett syndrome, Cammy’s everyday life has many more challenges than neurotypical children face. Among those challenges: getting ready for a dance. Fortunately, Cammy’s younger sister, 12-year-old Ryan, embraced all the…

When I think about high school, I immediately think about friends, sporting events, getting a driver’s license, and dances. As a parent, I’ve always wanted my children to have fun, safe, and positive experiences like I did. Now that my oldest, Cammy, is a freshman in high school, I…

Children with Rett syndrome typically go through a regression in their development between the ages of 6 and 18 months, but I didn’t notice Cammy, our daughter with Rett, regressing that soon. Instead, I saw some slower development early and more of a stagnation of skills when…

Summer is always hard on me. I don’t get much respite with a daughter who has Rett syndrome. Summer school is only three hours a day for five weeks, so my body and mind don’t get much of a break from being Cammy’s caregiver. My husband has…