Columns

Honoring the healthcare providers who became our second family

Our local hospital, Northwestern Medicine Central DuPage Hospital in Winfield, Illinois, offers patients and caregivers the opportunity to nominate a nurse for a Daisy Award. It’s a way to recognize the tremendous and extraordinary care a nurse has provided. I wish I knew the statistics about the number…

Help us celebrate our daughter’s first heavenly birthday

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…

Venturing out into the world as a family of 3

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…

In loving memory of our sweet angel, Cammy

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…

How hair, makeup, and date preparations helped 2 sisters bond

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…

Reflecting on my daughter’s early developmental regression

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…