Finding my ‘web of support’ during the most difficult days
A columnist leans on her loved ones to get through triggering times
October is a triggering month for me. Grief punches me in the gut every day.
In October of last year, my oldest daughter, Cammy, went from having a fairy-tale homecoming at school to being hospitalized in the pediatric intensive care unit (PICU) for six weeks. She passed away on Dec. 13, 2023, from complications of Rett syndrome.
This morning, my sister texted all of us siblings a clip of actor Andrew Garfield as he perfectly and eloquently describes the grief he feels for his late mother. It’s the most accurate description for my grief that I’ve seen.
When Garfield mentions a “web of comfort” he received from family and friends, I sobbed, because each of my sisters separately told me during Cammy’s final days, “I got you. We got you.” It was the only comforting thing that stayed with me. I felt that web of hands catching me and my broken heart during our darkest time. I still do.
After being incredibly emotional while watching that video, I drove to the volleyball game of my younger daughter, Ryan, at Cammy’s former middle school. I knew that returning to the school for the first time since Cammy graduated from there would be hard, so I did breathing exercises on the way.
Then I had a panic attack while walking toward the school. A group of peer buddies at middle school called the Eagle Club was waiting outside to be picked up by parents. Eagle Club, like its high school version, Flock, helps neurotypical students form friendships with kids who have special needs. Both programs give kids such as Cammy a chance to hang out outside of school, without parents, to do activities that are typical for kids their age. Cammy loved both the Eagle Club and Flock.
Cammy and her beloved physical therapist, Kari Walker. (Courtesy of Jacqueline Babiarz)
As I stood there paralyzed and crying, Cammy’s former physical therapist, Kari, came over and hugged me tightly until I could breathe again. Cammy loved her so much, a love that was 100% reciprocated to our entire family. Kari told me that continuing to work with the Eagle Club makes her feel close to Cammy.
As we approach Halloween, every day feels heavier than the previous one. Last year’s Halloween was the last one we’d celebrate with Cammy. It wasn’t even a good one, as it was her second day in the PICU. We didn’t know it at the time, but it was the beginning of the end. I keep trying to convince myself that Cammy will have the best Halloween with my parents in heaven, particularly because Halloween was my mom’s favorite holiday.
Every day since Cammy passed has been difficult, yet I feel my web wrapping me up. I feel the arms hugging me tightly. I feel the hands holding mine. I feel the love going straight into my soul, catching me when I fall, as Kari did. I’m so grateful for that web of support.
The individual threads of that web might seem delicate, but wrapped together tightly, they firmly sustain my broken heart.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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