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Dec. 13 marks two years since my oldest daughter, Cammy, passed away from complications of Rett syndrome. She was 14 years, 9 months, and 3 days old. I hold on to that number because it matters. It’s not just a measure of time; it’s a line in our family’s…

While raising a child with profound special needs, I felt like we didn’t have control over much. Rett syndrome grabbed ahold of our late daughter Cammy, and there wasn’t much we could do about it. The only things we felt we could control were raising awareness, fundraising, and assisting…

I’ve always been fascinated by birth order theory, which suggests that the order in which children are born may influence their personality traits and relationship roles. As the youngest of six kids, I loved being the baby of the family. While my siblings would say I was spoiled,…

My oldest daughter Cammy weighed 40 pounds at her heaviest. Having a 40-pound 5-year-old would be fine, but Cammy was 14 when she weighed that. Her 4-foot-tall, 40-pound frame was at “failure to thrive” for most of her life. Cammy’s weight was always a catch-22 for us. It’s scary and…

Grief is complicated. There’s no playbook, but I wish there were. I try to prepare myself for events that I know will evoke grief, but I can’t stop it from bubbling up. My oldest daughter, Cammy, passed away in December 2023 at the age of 14 from complications of…

Most people from my parents’ generation remember where they were when President John F. Kennedy was assassinated in 1963. Sept. 11, 2001, was my generation’s “Where were you when …?” I was driving to an 8 a.m. class when I heard on the radio that a plane had crashed into…

Last week, I attended a Crisis Prevention Institute (CPI) training session at the school where I work, and I couldn’t stop thinking about my late daughter, Cammy. Listening to examples of students’ trauma and precipitating factors that staff and fellow classmates might not be aware of reminded me of my…

I’m the youngest of six children: four girls, a boy, then another girl. (That last would be me.) I was always jealous that my sisters were able to be together while attending the same high school and college. Hearing their memories of carpooling, hanging out, being teammates, and preparing…

Getting my hair washed at a salon is one of my guilty pleasures. It feels like I’m being pampered, and the deep scalp massage feels like a luxury. But last week, as my head was in the sink, I felt tears welling up. I closed my eyes to try to…

Having a child with Rett syndrome who can’t communicate their needs, desires, and emotions as easily as a neurotypical person does is sad, frustrating, and complex. There were many times when we asked our late daughter, Cammy, a series of yes-or-no questions to figure out what was going on…