THE last word encore

Life Happens by

Deborah Goodknight Hanley

M

y parents met in 1954. Dad was in the Air Force, and Mom worked as a bookkeeper. Dad had guard-shack duty at Peterson Air Force Base, in Colorado Springs, where he habitually told women who passed through the gate that he got off at 11 p.m. Mom passed the shack several times while going to work, and she was the one who came back at 11 p.m. They dated, and when Mom discovered she was pregnant, they got married. It didn’t matter that neither had told their parents about the other or that Dad’s tour of duty would soon be up — they made plans anyway. Mom would work, and Dad would go to college on the GI bill and eventually get a good job to support their new family. My parents moved to California, where Dad enrolled in a community college. My brother Steve was born. There was little money. My grandmother sent greeting cards for every possible holiday so that her enclosed cash gifts would not be viewed as “handouts.” Mom figured out Grandma’s game plan fairly quickly when they received a “Happy Groundhog Day” card in the mail with $50 in it. When he was 2, Steve was diagnosed with Duchenne muscular dystrophy, a genetic mutation carried by the mother and afflicting only sons. My parents were advised to have no more children, but life was happening, and Mom was pregnant within a year. They were relieved when I arrived, since they were learning what life would be like for a boy with Duchenne’s. Duchenne’s progresses quickly, and Steve would go from walking to using crutches by age 5 to a wheelchair by age 9. He would not live beyond his teen years. His mind would be sharp and his wit biting, but his muscles would melt away. Dad worked during the day and attended night classes in petroleum engineering. A year after I was born, Mom delivered another boy. Eleven months later a third son was born. (I know what you’re thinking, but the birth-control pill wouldn’t be available for another year.) Now all plans were on hold, except the one where my Dad would finish his master’s degree and get a well-paying job to support his family of six. Dad graduated, and while the new batch of petroleum engineers spread out to jobs all over the globe, he took a job in California. The plan was to get Steve the best medical care, which was in the U.S. Over the next few years we learned that neither of my younger brothers had muscular dystrophy. My parents saw life come back into focus and began to make new plans. Steve was in fifth grade when we moved to Omaha. He was now in a wheelchair, which wasn’t allowed in public school hallways in 1965 (the Education of All Handicapped Children Act of 1974 was still a ways off) so he attended a school for disabled children. While his siblings walked to public elementary school, Steve and his classmates were picked up and dropped off at home each day by yellow taxis,

46 | Encore NOVEMBER 2014

A lifetime of plans made and unmade began when the author’s dad was on duty at an Air Force Base guard shack.

courtesy of precise planning and financing by Dad and several other fathers (transportation for the disabled would come much later). Steve was almost 16 when Dad took a job in Denver, hoping it would benefit both our family and his career. Two months after we moved there, Steve developed a chest cold, and, without the muscle strength to cough to clear his chest, contracted pneumonia. The night he died there was a forest fire in the foothills outside Denver, and the emergency vehicle that pulled into our driveway at 2:30 a.m. had come straight from the blaze. As two soot-covered EMTs wheeled Steve’s body out the front door, our family’s little boat lost the wind in its sails. Our charted course had always been determined by Steve’s needs. (continued on page 45)