The story of Jeff and Molly Daly hits close to home for me. My oldest brother was born with handicaps in the 1960s. My parents raised him at home for as long as they could. In some ways they were lucky -- the institution they turned to was an excellent facility and in many ways my brother thrived. Still, with Molly on my mind, I wondered about the difficult decisions my parents faced when their firstborn arrived and how those decisions never really got easier. Below is my mother's story.
Tim Langmaid, Managing Editor, CNN Medical News
Bradshaw Craven Langmaid -- we called him Shaw -- our firstborn, arrived two weeks past due on June 25, 1961, in Marquette, Michigan, just one week before his dad was honorably discharged from the Air Force. Weighing nearly 9 pounds, Shaw was not red and wrinkly as most newborns. He was an eager nurser and slept well from the start. We did notice that his left eye and nostril were smaller than the right, and within a few weeks we also noticed that he was unable to hold up his head.
Shaw Langmaid was born with cerebral palsy in 1961.
Upon our return to the Boston area, Shaw had his three-month checkup. After a lengthy exam the pediatrician told us Shaw had cerebral palsy. The doctor was kind but direct and said that time would tell the extent of his disability. As she had five children, one of whom also had cerebral palsy, we had little doubt of her diagnosis. In the fall, Brad, my husband, was immersed in graduate studies and I was a first-time mother of a developmentally challenged child.
As expected, Shaw's progress was slow. A happy and good-natured little guy, he finally sat up on his own at 2˝. We celebrated as we were to celebrate each of his accomplishments. All of our doctors assured us Shaw's condition was most likely due to an event during early pregnancy and was not hereditary or likely to be repeated. Our son Ben was born two years later and Tim three years after that. Each took Shaw into his heart in his own way. Both were extraordinarily kind and gentle with him.
Shaw loved music of all kinds, but especially marches. I would play John Philip Sousa and his face would light up the room.
By the time Shaw was 4, we had moved to the Washington, D.C., area. He started school at the Northern Virginia Cerebral Palsy Center and I attended monthly support group sessions there. These times were for sharing our concerns, frustrations, and in some cases, our guilt as well as our hope for the future of our children.
First steps at 9
Shaw was able to stand alone at 6, and at 9 he took his first faltering steps. He remained in diapers through his teens. While able to communicate some of his wishes with noises and limited signing, he was never able to verbalize.
Shaw and my mother had a special relationship, call it a bond, from infancy. I loved to watch them together. He delighted in her singing two or three particular songs. His favorite was "The Owl and the Pussycat." The closeness between them remained until the day he died.
Shaw also loved the beach, where we spent the month of August every year. He enjoyed the sounds of the birds and the waves rolling in and then sliding out. He sat in a red molded seat called a "tip and rock," where, in his floppy brimmed hat, Shaw surveyed his favorite place in the world.
Food was a priority for Shaw, especially mashed potatoes mixed with peas and gravy, as well as applesauce, spaghetti, butternut squash and pudding of any flavor. A large plastic sheet was placed under his chair at the table. His brothers had their places set more than an arm's length away to avoid any flying food as well as to escape Shaw's efforts to eat their mashed potatoes. He especially liked cold milk and would down his in a few gulps and then look for more from his brother's glasses.
We were never sure how much Shaw saw beyond basic colors and shapes, but he had an acute sense of touch. He would reach out and gently feel your arm or face if the initial touch was familiar. When he felt a new texture his hand would jump away as if stung. He never did become accustomed to our two cats, who found him interesting and wanted to snuggle.
We were the youngest family in our immediate neighborhood. I cannot say enough about the kindness and support friends and their teenage children gave our family, which now included Shaw and his two younger brothers. Our neighbors seemed to immediately understand Shaw's and our special needs. We were truly blessed to have been a part of that wonderful community for six years in the late 1960s and early '70s.
A new second home
As parents of a handicapped child who attended a county special-educational program, we were occasionally visited by a social worker. One afternoon she arrived as scheduled to find me with a 7-month-old, our fourth son, nursing; our 5-year-old having just returned from kindergarten snacking at the kitchen table; our 9-year-old doing his homework; and 11-year-old Shaw sitting on the potty telling me in his nonverbal way that he was done and wanted "off." By then Shaw was almost as tall as I am, 5 feet 2 inches. The social worker looked at this scene and said almost immediately, "I believe we'll move Shaw up to the second group to be admitted to the Northern Virginia Training Center." We both laughed.
The NVTC was a new residence for the mentally and physically handicapped about 15 miles from our home. It had become a reality after years of hard work by many parents, the Virginia Association for Retarded Citizens and several other advocacy groups. Prior to its opening the nearest residential facility was nearly a four-hour drive from Northern Virginia. The center would be Shaw's second home for the rest of his life.
At first Shaw came home most weekends to ease the adjustment for him and for us. As he became increasingly comfortable at the center, his weekend visits became less frequent. Shaw was often picked up at the center by one of his brothers, who by then were driving. He invariably managed to turn his wavering walk into a determined stride to collect a big hug. Although Shaw seemed to thoroughly enjoy his weekend visits, by Sunday he was ready to return to the routine of the center. Around 3 o'clock on Sunday afternoon he would struggle to the chair by the front door and call for us to take him back.
While Shaw never could verbalize, he did not have trouble communicating some of his likes and dislikes with a smile or an occasional tear. He had a broad smile that he easily shared when he heard a soft word, a familiar voice or a song. At the Center School he learned basic signing and a routine that served him well for the 16 years he lived there.
Shaw's short life also was marked by several minor and major surgeries. It's very difficult for any parent to hand a child over to doctors for surgery. But when that child is unable to communicate effectively, the struggle goes very deep. As Shaw grew, the spiral curvature of his spine caused his rib cage to affect other organs. Once fully grown, he had two major back surgeries. Similarly, his ankle bones never fully developed and eventually the pronation was so severe he was walking on the insides of his feet. A second round of major surgery was required to correct his stance so he could still walk.
Although I would not want any child to face the pain and fear that accompanies such surgeries there is no question they improved the quality of his life as for the first time he could be truly ambulatory.
Although we gave Shaw the best we had of our care and love, he came into the world with too many handicaps. Along with his other physical disabilities, his kidneys became increasingly less efficient. Their eventual failure took his life at the age of 27.
Shaw was a special gift to us and to our family. He taught us unconditional love. He brought us dear friends who were unbelievable sources of support. He gave to his brothers a keen awareness of and sensitivity toward others in this life who are challenged. He enriched our lives in ways hard to describe but still felt.
Thank you, Shaw. E-mail to a friend
Jane C. Langmaid is a retired preschool teacher and lives with her husband in Alexandria, Virginia.