By Loretta O’Leary Aberli
On a frigid February night, while most Louisvillians were scurrying to the closest grocery to “stock up” for predicted bad weather, a small group of Holy Trinity Church parishioners gathered in the parish Youth Center to learn about Down syndrome.
Mary Jean Gandolfo, our pastoral associate, arranged this event to coincide with “Everybody Counts Week” at Holy Trinity, a series of events and activities which are designed to increase awareness of the value of persons with disabilities and chronic illnesses.
Our guests were Father John Burke of Good Shepherd Church; his sister Marty Murphy, a third grade teacher at Holy Spirit, and Diana Merzweiller, the executive director of Down Syndrome of Louisville. Each had a story to tell which helped us understand the many blessings and challenges of a having a person with Down syndrome in the family.
Ms. Merzweiller told us of her daughter’s challenging pregnancy and her family’s journey from the diagnosis of Down syndrome to the acceptance of the different, though equally fulfilling, role that each family member would play in her precious grandson’s life. Her experiences led her to become involved with Down Syndrome of Louisville, which is recognized internationally for the comprehensive services it provides for persons with Down syndrome from birth through adulthood.
Marty Murphy, mother of Kyle Murphy, now 29 years old, continued our event with “my Kyle story.” Marty described her journey, beginning with the revelation of his diagnosis and continuing with her family’s reaction and acceptance of their new family member.
She emphasized the roles that family, friends and professionals played in Kyle’s life, as he required a considerable amount of supervision and assistance in achieving developmental milestones and educational goals. She entertained us with her description of Kyle, the “escape artist” who was well-known at school and in the neighborhood because he managed to slip away to go for a walk when the opportunity presented itself.
She related one occasion when he was in the fenced yard, gate locked, playing with the dog. As the story goes, Kyle went over the fence, the dog went under the fence, and Mom was locked inside the fence, unable to open the gate!
Father Burke’s face lit up as he began to tell us of his relationship and experiences with his nephew. He spoke of the “great command” of Jesus and quoted psychologist William Glaser: “The most important thing for a human being is to love and be loved.”
Father Burke told us that Kyle “gets that,” even though he can’t read. He is naturally loving and affectionate. Father Burke continued, “When he greets me with a big hug and a kiss I feel like a million dollars!” And, when there is conflict among his brothers and sister, Kyle is there with his arms out to encourage a “group hug.”
Father feels that Kyle is a natural mystic, praying on the way to work and never forgetting to pray at a meal, sometimes reminding the rest of the family. Prayer also played a part in a humorous story about Kyle’s reaction when the power went out during an ice storm, keeping Kyle from watching movies or playing video games. Father Burke threw up his arms as he demonstrated how Kyle went outside, threw up his arms, and said, “Help me, God!” and how, when the power returned, he again went outside, threw up his arms, and said, “Thank you, God!”
Father Burke spoke of the intensity and transparency of Kyle’s feelings. “Kyle doesn’t need counseling. … You know when he is happy or sad or mad.” Kyle loves singing and dancing, and when his mother was very sick, he worried about her and checked on her constantly.
Father concluded his story about Kyle, noting, “When Kyle was born, it was a real shock to all of our family. Kyle does need special attention and he can be a challenge to our patience at times, but there is no doubt in my mind that Kyle has been a blessing to me and to our family. We are a better family because of Kyle. I am a better person because of Kyle.” He said he is saddened deeply by statistics that indicate that when a woman is diagnosed as being pregnant with a baby with Down syndrome, a large percentage of those pregnancies end in abortion. “Kyle is much more than a ‘special needs’ person. He is very, very special and I am so grateful that he has been such an important part of my life,” he said.
For more information about Down Syndrome of Louisville, go to downsyndromeoflouisville.org.
Loretta O’leary Aberli is a member of Holy Trinity Church.