Columns

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…

When my oldest, Cammy, turned 1 in 2010, I began taking her to various appointments to find a reason why her skills were regressing. We went to a neurologist, hearing and vision specialists, physical therapists, occupational therapists, and developmental therapists. After nearly a year, a physiatrist recognized her…

A steady flow of firefighters, emergency medical technicians (EMTs), and police officers came through our home a couple of weeks ago — but not for the same reason as they have in the past. We had to continually reassure our medically fragile daughter, Cammy, 14, that the firefighters and…

I tend to become quite envious when I see parents selling their no longer needed baby items. It means they’re done with changing diapers, pushing strollers, and cleaning up drool. Their children are at a more independent stage of development. Having a child with Rett syndrome means that I will…

All my life I’ve heard inspirational phrases such as “Carpe diem” (“seize the day”), “You can’t take it with you,” and “Life is short.” They were just words to me until I had a child with profound special needs. In 2011, our firstborn child, Cammy, was diagnosed with…