This past week our daughter Carolyn and I flew from Toronto to Vancouver on a four-day pilgrimage. We were going to visit John David, our special needs son and brother who lives in a group home in Surrey, B.C., and to look in on my wife’s sister, Isobel, a resident in an Alzheimers facility in nearby Coquitlam.
John David was born just months before I graduated from Asbury Theological Seminary in Wilmore, Kentucky. From the start we were perplexed by conditions that our three other children had not shown as infants. He cried piercingly most nights through much of the night and because of muscular weakness throughout his body it was difficult for him to swallow even the milk that he needed to survive.
When he was four months old Kathleen and I and our four children left seminary and crossed the continent diagonally from Kentucky to New Westminster, BC. I had been appointed to be pastor of the Free Methodist congregation in that city.
Our long, tedious trip was made more difficult by John David’s pressing needs. We did not know what his problem was and thought perhaps abundant maternal care would solve early developmental problems and help him to get his roots down into a normal life. But it was not to be.
When John David was one year old and had undergone three days of tests at Vancouver Children’s Hospital, a caring pediatrician, a Dr. Dunn, told us that our son would always suffer severe limitations and would need protection from society for the rest of his life. Parts of his brain were not functioning.
The doctor’s gentle suggestion pointed toward an institution.
Two years later, at three years of age we placed him in Woodland’s School, a large institution for persons like our son. Years later, when that place closed he was moved to the group home in Surrey where he has lived ever since. The group home accommodates four residents and a staff.
John David apparently suffered oxygen deficiency to the brain during birth. Nothing could be done for him, Dr. Dunn told my wife by telephone. John David is now 56 and does not talk although he makes elementary sounds that his caregivers seem to understand. He spends most of his time in a wheelchair. He is well cared for and his caregiver, Marie Ryles, shows a special love for him and he a special trust in her.
Reflecting back on the decisions that had to be made regarding John David we are reminded of the nagging guilt we struggled with over his and our future. When the Province of British Columbia made it possible for him to be cared for at Woodlands, we wondered if placing him there was an abandonment of our responsibility. That created guilt. Also, Kathleen, who had poured her days and nights into mothering him with all of her strength and skill, suffered acutely over the separation.
At the same time, his needs were so great and growing that the thought of trying to care for him ourselves raised questions about Kathleen’s well being, the needed resources that would be lacking, and what the decision would mean to our home and the other three children. Guilt either way seemed inescapable.
The recent visit our daughter, Carolyn, and I made was comforting. We are not sure the word, father, has meaning to John David though his primary caregiver believes it does and she is more skilled than we at reading the signals. The home seemed light and well cared for, the three staff members who were present gathered around the table with us and John David and we were impressed by their warmth and cheeriness. His primary caregiver, Marie, a devout Catholic Christian, shows special skill in dealing with our son.
Life has gone on for him and us and we are sure he has received the best and only care suited to his needs. Moreover, the provision of the group home is evidence of ongoing societal compassion toward him. But we live knowing that there is an imaginary chair at our family events that we wish had not been left forever vacant.