Many years ago my parents received a gift that they never asked for. My mother grieved for six months when she discovered that her youngest child, Scott, had been born with Down syndrome. It was routine for doctors in 1961 to advise parents to place such infants in an institution so that they did not adversely affect the rest of the family. The doctors made that same suggestion to my parents, adding that Scott would never live to see his 40th birthday. Fortunately, my parents rejected their advice, deciding to keep Scott at home and to raise him as they did the rest of their children. They had no idea what to expect as they navigated these uncharted waters, but were willing to accept the gift that God had given them and provide Scott with the same opportunities and love that they gave to all of us.
Scott learned how to do things that the doctors said he would never be able to do. To their astonishment, he learned how to swim, and to play baseball and football. He joined a bowling league and at his prime held a 140 average. My parents purchased a pool table and placed it in the basement. Scott became so proficient that I once brought him to visit our brother Keith at college. We decided to visit a bar which conveniently had a pool table where we took on all challengers in doubles, and we held the table for nearly the entire night.
Scott’s true gift, however, was his ability to bring people closer together and to show unconditional love. My parents became better parents—and better people—because of Scott. My father learned to be more patient and to be more creative in finding ways to develop Scott’s talents and teach him the courtesy and manners that made him a favorite of so many. My mother became intimately involved with the local chapter of AHRC to the point where eventually the Bellport group home where Scott lived for 17 years was dedicated to her memory.
As Scott’s siblings, Sue, Keith and I learned to watch over him. Scott showed us love, and we grew even closer. We became more understanding and compassionate. He changed our lives. Sue became a special education teacher, as did one of her daughters. Keith became involved with an organization that serves the developmentally and intellectually disabled in Wyoming where he lives. I began helping parents who have disabled children plan for the time when they will no longer be around. Scott’s influence has extended far and wide and deep.
Scott has outlived both of our parents. One consequence of living longer and having Down syndrome is the prevalence of Alzheimer’s disease. Scott began to show signs of that over ten years ago. His decline began to accelerate about two years ago.
This past year has been a difficult one for me, my siblings, my wife, and most of all, for Scott. A grand mal seizure sent Scott to the hospital. From there he was transferred to a rehabilitation and nursing home facility. Scott was supposed to return to his group home but that was not to be.
Would I have spared Scott the pain and suffering of the last year if I could? Of course. Would I have chosen the path I was forced to walk this past year? No. But as I reflect on this past year, I realize that although we would never have asked for this, my family’s struggles have forced us to lean on each other in a way that we rarely have had to. We have discovered—or been reminded of—the special gifts that each of us possess. Scott, and our combined pain and suffering, has brought us even closer. Scott continues to be the glue that holds us together.
These last weeks I have been privileged to experience the love that has come our way as a result of the relationship that Sue, Keith and I have with each other, and our special love of Scott. The people at the hospital where Scott spent his last weeks were overwhelmed by the love they witnessed within our family. Scott’s nieces and nephews came from all parts of the country to say goodbye. When you have the kind of love that Scott had, it never diminishes in its power to affect people. Even seasoned ER nurses were brought to tears by what they saw. As my wife pointed out after watching our family rally around Scott, love is not just about flowers and hugs and kisses. Love is also about pain and suffering, and how we handle it, how we respond to it, and how we deal with it.
Through his special love, he has given us an even greater gift—a love of each other that was greater than before. Scott was the perfect gift to our family.
Scott Marcott died on January 31, 2019 at the age of 57.