The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

Sissy
Amanda and Sissy
Amanda and Sissy
Sissy

My daughter Amanda met Sissy when she got a job as a direct care worker at the group home where Sissy had resided for several years following the death of her parents. The two hit it off immediately, and everyone joked that they were so much alike that they could have easily been sisters. Not long afterward, our family was given the opportunity to invite Sissy to live with us through Pennsylvania’s “Life Sharing through Family Living” - a program designed to allow individuals living in group homes to become part of a real family. Sissy joined our family four years ago and since then has completely transformed our lives. I had worked as a nurse in the field of developmental disabilities for nearly thirty years before Sissy came to us, but was not prepared for the overwhelmingly positive changes that would take place in our family after she moved in. Although we had to make some significant and sometimes challenging adjustments to our lifestyle, we would not trade our experience with Sissy for the world. It didn’t take long for Sissy to completely mesh with everyone in the family, and even our extended family has fallen in love with her. My brother has since become her legal guardian, and my children introduce her to their friends as “my sister.” She even inspired me to write a book dispelling many of the commonly-held myths about people with Down syndrome and their quality of life. I realize this is a much over-used cliché, but Sissy truly does give us more than we give her. She wakes up smiling every day and goes to bed the same way, and more than anything has shown us all how to relax and “just be.” While she loves to be on the go, her very favorite activity is simply sitting around the dinner table and chatting with the family. I snapped this photo of Sissy and Amanda doing just that during a recent vacation to Memphis.




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