When there is a person or child with cognitive disabilities in the family, thoughtless euphemisms, even if well-meant, become irritating, often angering. Life with a cognitively challenged person is incredibly demanding. In fact, it is no exaggeration to say that parenting a child with disabilities means added complexity and challenge to every normal, day-to-day activity. And, people say hurtful things to parents and grandparents. When my granddaughter Rachel was born a child psychiatrist extended her sympathy. She took me aside and said, “Down Syndrome babies are cute, but they cause much pain and heartbreak later.” I wanted to hit her, and would have if she hadn’t been ninety and I wearing my pulpit robe.
I used to bristle when anyone would say, “She must be such a blessing.” I always wanted to respond, “You have no idea what you are talking about.” It was about the time when a second grade classmate of Rachel’s little brother made a derogatory comment about how stupid she was. To his everlasting credit, and earning a special place in the Buchanan family Hall of Fame, Johnny became indignant and responded, ” well she can spell ‘cow’ and you can’t!”
And she is a flat-out, unadulterated blessing, a gift to her parents, brother and sister, aunts, uncles, cousins and her deeply blessed and grateful grandparents. We are all different because Rachel is in our lives; better, I believe.
I witnessed a lovely example of the blessedness last Friday night. Rachel is 20 now. Her love for her little brother, 6’1″Johnny, 18, and sister, Eleanor, 14, is boundless. They tease, jab and punch playfully, and express their unselfconscious affection openly and frequently. I was moved to tears recently to watch the three of them sitting on the couch as we admired their freshly cut and decorated Christmas tree, arms around each other.
Rachel’s blessing extends beyond her family, far and wide. Friday night, she, along with other family members, sat in the crowded bleachers at DePaul University Arena, watching Latin School and Francis Parker, two fine Chicago private schools and fierce rivals, play basketball. Johnny is on the Latin School team. It was a close, hard-fought game which Latin won and afterward players’ families waited in the Arena lobby to greet and congratulate. When the team emerged there were plenty of cheers and high-fives and embraces. Johnny’s supporters included parents, sisters, aunt, uncle, cousin and us – grandparents. He headed straight for Rachel, lifted her off her feet in a wonderful hug. “Way to go, Dude!” she said. Then he tended to the rest of his admirers.
The most remarkable thing then occurred… Johnny took Rachel by the hand and led her to his teammates – all of whom know her and love her as well. One by one, a group of tall teen age boys, high fived, received her blessing, “Way to go, Dude!” and swung her off her feet in enthusiastic hugs.
A tiny, blond, 20 year old blessing.
I was a camp counselor for Down Syndrome children a couple of years – what a wonderful time!! Thank you for your column. Blessings, Bronwen Boswell