Aunt Peggy is an exceptional woman who was born during the 1950s. At a time when children with Down syndrome were sent to homes, my grandparents loved (I says loved because they are deceased) Peggy and raised her the same as my father, his brother, and his two other sisters. I do not think I fully grasped how unusual and amazing that was until I read The Memory Keeper's Daughter a few years ago what that truly meant.
Peggy was not even diagnosed until she was 3 months-old. She had trouble crawling like most children with DS due to the low muscle tone. Determined to get around, she scooted around on her bottom and then eventually walked. She graduated high school at 21 years-old. She has a boyfriend. In fact, she has had many. She went on vacations with the whole family growing up. She was included in all adventures. Because of how my grandparents and siblings treated her, Aunt Peg grew into a wonderful woman full of love and resourcefulness. Aunt Peggy is difficult to understand due to a lack of speech therapy that is so often provided to really young children these days. Times were different back then. However, she recognizes this and does not let it set her back. Cannot understand what she says? So what? She will rephrase it a different way and use hand gestures. She will get her point across.
Since both grandma and grandpa have passed on, she has moved into the Rainbow Village--a campus-like home for adults with intellectual disabilities. She has her own room and has a job. She uses their transportation system to get around town. She is on a bowling league and enjoys swimming. She is relatively independent with some supervision.
My father likes to tease his youngest sister like all brothers do. He will say "Oh Peg, I am getting so old." Aunt Peg replies "Me know" with a grin while patting the top of her head--insinuating that my dad is bald and therefore old. Her sense of humor can lighten any mood.
When Ellie Bellie was born and diagnosed with DS, I was scared. Of course any parent would be. However, I had the advantage of knowing that although life would be somewhat different from what Andrew and I originally anticipated, it wouldn't be that different. Peggy has a full life. She brought love, acceptance, and patience to those around her. I learned from her and my father's family that a diagnosis of DS is NOT devastation. A challenge to be sure, but also a blessing.
Growing up, I did not know something was "different" or "special" about my father's youngest sister. She was always just Aunt Peggy who was difficult to understand, but very talkative and close to grandma. I often thought that Peggy surely was Grandma's favorite child.
As the years past, I entered the teenage years where, yes, clearly Aunt Peggy had DS, but who cared because I had more important things to worry about such as acne, boys, and grades.
The thing is, I often worry about Ellie and being teased and not being accepted. Should I be? Young children see other people as just that, people. They see Ellie as someone to talk to and play with. She is "a baby". Kids at restaurants and playgroups talk to Ellie and try to play with her. (Unfortunately, it is sometimes the parents that react in a not so kind manner discouraging their children from talking to her--another post all together). As teens, we recognize the difference between people, but typically do not care due to the self-centeredness of adolescence--well at least that is my hope.
Both Peggy and Ellie have trisomy 21. This is a genetic, but not a hereditary disorder. That means it is a result of changes in the genes--in their cases an extra 21st chromosome (hey, the more the better, right?). It is not hereditary in that Andrew and I had no greater likelihood of having a child with DS than the general population.
Aunt Peggy, I love and you are an inspiration. Happy 52nd Birthday Peggy!
|Peggy & Ellie together for the first time.|
|Look at how enthralled Ellie is with Peggy!|
For those of you afraid of the Alzheimers Dz: Yes, there is an increase risk for Alzheimers due to the extra 21st chromosome. Aunt Peg is just now starting to show some signs of the disease, but she is on medications that work very well.