Not having to make every decision around accessibility and special needs is definitely taking time to get used to. It has been six months since my oldest daughter, Cammy, passed away due to complications of Rett syndrome, and my mind still goes directly to figuring out how to navigate any situation with a wheelchair, feeding tube, oxygen, and diaper changing.
Everything for the past 15 years has been planned around Cammy’s needs. Initial concerns automatically were making sure a venue was accessible, scheduling feeds and toileting, checking the temperature and volume of the environment, and having an exit strategy.
Recently, my husband, Bill, Cammy’s younger sister, Ryan, and I went to New York. Bill and Ryan had been there twice before because it was too difficult to navigate the Big Apple with a wheelchair and a child with profound extra needs. Cammy and I would have slowed them down or halted many sights they wanted to see. Going with Bill and Ryan to New York this time, without Cammy, was bittersweet.
Things are certainly different and strange
It was odd not being escorted through the airport to the front of every line and preboarding with a wheelchair. We boarded with most everyone else on the flight without fearing that a wheelchair might be destroyed as it was stored below the plane. We didn’t have to be the last ones off the plane or wait for a wheelchair.
Courtesy of Jackie Babiarz
From left, Bill, Ryan, and Jackie Babiarz take their first trip to New York after the passing of their daughter, Cammy. (Courtesy of Jackie Babiarz)
We hopped into a regular Uber. We didn’t have to request an accessible one or a vehicle with an extra large trunk to stow the wheelchair. We didn’t have to check if the restaurants had stairs or wide enough aisles. We didn’t have to worry about bringing a fan, umbrella, or blanket for temperature regulation outdoors. We didn’t worry about cobblestone paths for a wheelchair. We didn’t have to buy accessible seats at a Broadway show. We didn’t have to find elevators and an accessible spot to take the subway. And the single, narrow bathroom without a changing table in restaurants wasn’t an issue.
I realized that not only Cammy was missing. All of the equipment Rett syndrome brought into our lives wasn’t traveling with us, either. We didn’t have to plan a fully accessible trip.
While Cammy was with us in spirit, a quarter of our family was missing. I felt that emptiness with each adventure we embarked on in New York. I kept thinking about how much Cammy would have loved the Michael Jackson show, Coney Island, and the Hershey’s store.
On our last day in the city, I was able to shift my mindset to how much Cammy was enjoying watching us continuing to live, smile, love, and keep her memory alive, bringing her with us wherever we go.
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