My sister, Janet, was born with Down Syndrome, but any turmoil and distress caused by her birth into the family had pretty much been adjusted to by the time I came along five years later. While others may have viewed her as a special child who needed extra love and patience, I saw her as just another sibling. As a big sister, expectations were stretched a bit more for her than if she had remained the youngest of three, so I like to think that knocking Janet out of the baby spot in the family was good for her character development.
Many worry about the impact on the other children in the family when there is a developmentally disabled sibling. Let me tell you some of the things I absorbed because Janet was my sister, but never did as well as she. To try hard. To approach life with zest, optimism and trust. To see people’s strengths first. To forgive. To give hugs. That not being normal does not mean you are imperfect. That a higher IQ can be outwitted by a master of passive of resistence with a beguiling tilt of her head or if need be, tears she could let course down her cheeks at will. Unlike we “normal” folk, Janet did not require the potential for skill to take on and enjoy life. Mastery was not as important to her as simply trying something, preferably in the front and center position,
Janet made our family a more interesting one than it would have been otherwise. Our family stories are funnier and our exposure to a greater cross section of the community was largely due to having Janet in the family. Back in the early forties, when my parents decided to raise a Down syndrome chiId in the home, I would like to think that they saw themselves as saints and marched boldly into the relatively uncharted territory with determination and courage. The truth is, that after the initial shock and the lack of humane alternatives, Janet became just a baby that needed love, and for one day at a time, they loved her, and waited to see what the future would bring. Because of my parent’s willingness to meet this challenge, we have learned that a disability is not a punishment from God, a mistake, a test of our faith, an ordeal, or a sacrifice. Because Janet was born and thanks to the determination and strength of my mother, Barbara Smiley, the Peoria community, in fact, the State of Illinois, have vastly improved their services for the developmentally disabled beginning with her founding of the Peoria Association for Retarded Citizens. I used to wonder sometimes when Janet died if she would be made whole when she reached heaven. But I now believe that she was born whole, and by being just the way she was, she did more than her share to make a positve impact on the world.
Janet died on February 16, 2000 at the age of 58.
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