Respite Care: My People
Caregiving for people with disabilities is commonly referred to as respite care, centered around the idea that when someone else is caring for a disabled individual, their family gets a period of rest or relief, respite. For me, respite care extends past the textbook definition. It means coming up with an outing tailored to each person’s interests: taking the train for Luke who loves conductors, going to Starbucks to get cups of ice with Karla, or searching for the best gummy bears with Brie. Respite care means spending time with friends I care deeply about.
One outing, Luke and I decided to take the train all the way into the city to explore (we live in the suburbs so this was a very big and exciting adventure.) Before going to the train station, we stopped at the local grocery store to buy a bouquet of flowers, a gift for our train conductors. We spent time dividing up the flowers, creating mini bouquets we could give to as many conductors as possible. We arrived at the train station probably a few too minutes earlier than we needed to, and had quite the anticipatory wait until our train pulled into the station. Beyond excited for our adventure, and having had quite the lengthy wait at the station before the train arrived, Luke bolted onto the train, ran into his desired car, and promptly claimed a seat. Luke, not the most subtle or quiet person to begin with, was excited as ever. I noticed a number of heads turn, and eye contact beyond the usual curious “polite” glance. Shifting my body to try and block the stares, I caught a glimpse of a sign. I immediately understood all of the attention we were getting. Out of all the cars to choose from, we had ended up on the one full of serious businessmen and women: the Quiet Car. I pivoted to signing, trying to remedy the situation by using ASL to communicate with Luke, and we quickly switched cars at the next stop. Once in a car with expectations better aligned with our needs, we followed through with our flower delivery plan, made it into the city, and had quite the memorable afternoon of exploration, excitement, and adventure.
*names changed for confidentiality
