Feeling the weight of the first back-to-school season without Cammy
The aftermath of losing a child is full of difficult firsts
During all of my school-age years, once August came around, I was ready to go back. I loved summer, but I also loved going back to school to see friends, play on sports teams, and follow a routine. I even looked forward to a few classes.
As a parent, I’ve been excited for my kids to go back to school, too. Both of my children, Cammy and Ryan, have felt the same way every August. This year, though, everything about the back-to-school season is hitting me differently.
It’s been eight months since Cammy passed away from complications of Rett syndrome. She should be starting her sophomore year of high school. This period is another first I have to get through.
When I took Ryan to Target to buy her eighth grade school supplies, my heart sank as I passed the aisles with diapers, wipes, coconut water, PediaSure, and other personal care items. There’s no back-to-school shopping for Cammy anymore. Even though Cammy’s school supply list looked nothing like a typical student’s and I needed a wagon to deliver it all, I miss it.
This year, I’m not updating Cammy’s About Me book, which contains every single characteristic about Rett syndrome and how it affected her. I’m not retrieving forms from her doctor to authorize occupational and physical therapy or delivering instructions about her feeding tube. I’m not on the phone with the school nurse updating Cammy’s medical protocol for school and the bus. I’m not getting a call from the bus company assigning Cammy’s pickup and drop-off times. A nurse won’t be coming to my house at 6:15 a.m. to push Cammy’s wheelchair onto the bus and accompany her all day.
The first-day-of-school boards will look different, too. Cammy won’t be sitting in her wheelchair next to all of the information for her sophomore year of high school. Instead, it’ll probably be a board displaying how her brilliant mind is still hard at work at the Harvard Brain Tissue Resource Center.
Seeing posts on social media about back-to-school events and yearbook orders at Cammy’s high school makes me so jealous and sad. Cammy should be getting excited about all of that. I thought I was going to get over 12 years of back-to-school days with each of my children.
It was so heavy to carry everything Cammy needed throughout the day — her feeding supplies, eye-gaze device, backpack, orthotics, oxygen machine, pulse oximeter, and more. Now that she’s gone, the absence of all of it feels even heavier.
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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Candace
I'm so sorry to hear about Cammy's passing. I had the honor of being her bus driver for a short period of time all the way back in 2019. She was always such a delight. I can remember when the other children on the bus would start getting rambunctious, how I would thank Cammy out loud for her always being so respectful and kind. The other children would start to settle down and follow her example. Cammy was such a beautiful young lady. I know that she is free and happy. I will keep you and your beautiful family in my prayers.