Friday, January 08, 2016
During that time, as one might imagine, he and I were constant companions. I carried him everywhere (including up and down the 19 stairs to the second floor of our house). One of the things we did together was cook. This picture shows him rolling out home made pasta. My mother made the chef's hat and apron for him as a Christmas present. We played board games, read stories, drew pictures, watched "Sesame Street" and went shopping. We were frequent visitors to the mall, roaming around to pass the time. He rode in a second hand wheelchair with the arms removed to accommodate his outstretched legs.
Jesse's handicap didn't stop us from living life pretty normally. We even took a plane to Florida and went to Disney World. He enjoyed the extra attention he got everywhere we went. To this day he claims to remember nothing about the experience except that it was "the only way to see Disney World." A child in a wheelchair is ushered to the front of every line, hugged by every Disney character, given special souvenirs.
In many ways that was a wonderful time of life for me. Our world was small and focused, insulated in a way. Our priorities were clear.