One of the most draining aspects of our lives as parents and caregivers of someone with Rett syndrome is decision fatigue. The American Medical Association describes decision fatigue as “a state of mental overload that can impede a person’s ability to continue making decisions.” Most parents experience this…
I have terrible memories of going to the dentist as a child: tightly closed eyes, the sound of drilling and suctioning, the removal of whatever was between my teeth, large needles going into my jaw. I hated it when my dentist asked me questions while my mouth was pried open.
Having a child with special needs means having additional worries, fears, and caregiving duties, especially during puberty. That’s a rough time for everyone, but when the child is nonverbal and nonambulatory, it’s much more complex. Typically, parents teach their children personal care like showering at a young age, and then…
When you’re dating someone, you can guess how they will be as a husband or wife. I knew my husband, Billy, was going to love me for better or worse, in sickness and in health. You don’t, however, know what your partner will be like as a mother or…
On Nov. 23, 2010, when my firstborn, Cammy, was 20 months old, a physiatrist clinically diagnosed her with Rett syndrome. I was relieved that someone had finally identified her condition, but equally devastated by what it meant. I’m not sure if the doctor didn’t know how to convey the…
My husband, Billy, met his best friend, Aaron, while playing golf at high school. Aaron began dating his wife, Joy, when they were in college. Billy became their third wheel until I came along a few years later. In our 20s, all four of us spent every weekend together while…
I vividly remember reading an article about the late Boston Marathon icon Dick Hoyt. It was 2005, and I was dating my now husband, Billy, the father of our two beautiful girls, Cammy and Ryan. I sent him the article, knowing he’d love it, too, as he was…
As my two girls finished up fifth and seventh grade, I completed my coursework in special education. My firstborn, Cammy, who has Rett syndrome, inspired me to go back to school so I could better serve other children with special needs. Now with my master’s degree plus a…
Everyone remembers their first concert — who came along, where it was at, and most importantly, who performed. I went to my first concert in the 1980s, when I was in second grade. My mom took my five siblings and me to see Michael Jackson at a local venue…
Our family hosts an annual fundraiser on behalf of our 13-year-old daughter, Cammy, who has Rett syndrome. This year’s event was held this past Saturday, and all proceeds are going to the International Rett Syndrome Foundation to help fund research into potential treatments or even a cure.
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