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…
Columns
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…
Caring for our late daughter, Cammy, often made my husband and me feel like we were sleepwalking through the night. Cammy had profound special needs due to Rett syndrome, requiring us to get up in the middle of the night. Our baseline became so skewed over the years; it’s…
When I was growing up, my parents never made a big deal out of graduations. In fact, my brother was at the beginning of the alphabet, so he walked across the stage in high school, received his diploma, and promptly exited through a side door, where we all met him.
In 2015, when a girl with Rett syndrome passed away, we for the first time experienced the death of someone we knew who’d had the disease. Our hearts ached for her family. I couldn’t help thinking we’d also be in that situation in the not-so-distant future. Months later, the…
Recent Posts
- A song, an obit, and a special needs parent meltdown
- The importance of raising awareness of disabilities at school
- Boosting production of mutant protein causing Rett may be new treatment
- What we’ve learned in 29 years as Rett syndrome parents
- Acadia to challenge negative opinion on Daybue approval in EU
- I’ve been on the lookout for the look that says, ‘Enough is enough’
- When the smallest things prompt the most poignant reflection
- Altered sensitivity to pain starts early in life in Rett mice: Study
- Rett syndrome linked to early disruptions in brain cell maturation
- Rett syndrome disrupts brain development in specific areas: Study