The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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New York New York 10012
800-221-4602
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Luke & Laughter
Luke Smiling at Me
Luke Smiling at Me
Luke & Laughter

My first encounter with normalcy since my husband and I heard the unexpected diagnosis of Down syndrome from my son's doctor was Luke's sweet smile. Instead of the bleak scenario predicted, I discovered a child whose wisdom and grace colorfully filled my days with singing and laughter, two activities I believed I would never truly partake of again. Our son was born in August of 1991 - at first, a perfect baby with a perfect Apgar score - until, five hours later, something went terribly wrong. While we knew that Luke had somehow lost the ability to breathe on his own, neither my husband nor myself were prepared to hear the ultimate diagnosis. Nor were we prepared to hear a series of abnormal responses from the series of professionals we encountered, from the geneticist who gently asked if we intended to give our son up for adoption, on through to the neurologist, who suggested we place him in a "better-equipped environment" before we had grown too attached to him. No one bothered to ask his name, and no one took the time to recognize that we had already fallen in love with Luke from the moment we had seen his beautiful face. Determined to provide Luke with every opportunity, we enrolled him at a pre-school for special needs children when he was six weeks old. Doing so made me a stronger advocate for my child. I cannot emphasize enough the importance of such a place in the life of a parent... the flow of information, the interaction with other parents, and their positive support bring a new agenda into your life. I used to be very impatient. My life was tied up in deadlines and competitions. Now, because I watched Luke create his own timeline, defying the odds by finally walking at the age of 5, and struggling to communicate via an elaborate pictorial system at the age of 6, I came to understand the beauty of taking things in slow motion. We liked to play on the swings for hours, and listened to all kinds of music, from Barney to Bach, all day long. Instead of weakening me, those new perceptions strengthened me. I'm inevitably reminded of the children's story of the bear that lost her baby. Her despondence was life threatening until she was given a teddy bear. How she loved him! She sang and danced for him well past her prime because, you see, her baby never aged. And so, she never felt her age and continued to be youthful until well into her old age. Luke has kept me younger, not because he does not grow up, but because he strives heroically to mature. He beckons me to run after him, dance with him, sing to him, read to him, and, finally, to respect him for whom he is, and who he will become. Luke is now almost 20, a handsome boy who cherishes his newfound independence, but who has never lost his ability to wonder.




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