Sunday, November 6, 2011
Thursday, October 27, 2011
Explaining Down Syndrome, To My Daughter, And Myself,
He stuck out his lower lip. "I want to be special."
A syndrome means, at root, a 'running together.' When you have a child, it all runs together: the heart defect, the eyes, the way her voice sounds, the name of the speech therapist, the worries over the future, the joys of discovery, the sliding sense--slow, quiet, enormous, an avalanche in the skull--that different is not as different as you thought. The genes produce the child, who lives a story, whose story is bound up with yours. So reducing a child to a heap of medical fragments is, for a parent, a complicated and dissonant act. It is a necessary fiction, a story one tells only in order to move on.
Posted by punkymama at 4:34 PM
Thursday, October 13, 2011
This past Saturday was our annual Up With Downs "Buddy Walk". It was amazing. It is so wonderful to be able to get together with families like ours, so many people, families and friends all blessed to know someone with Down Syndrome. I love seeing everybody, swapping funny stories, seeing how the kids have grown, etc. But I especially love seeing the new babies. It takes me back to when Riley was first born. We had no idea what our lives would be like fears, doubts, questions, I knew it would be different, but I never imagined it would be this great. To see the smiling faces of all these kids, like mine who are special not because they have an extra 21st chromosome, but because of who they are it remarkable. This year Riley's great grandparents, Gigi and Poppy Larry even got to come! It was awesome sharing in this community with them. Riley had a blast as always, she was worn out by the time we got home, but we loved every minute of it. A special heartfelt thank you to everyone who helped make the Buddy Walk such a success. I can't wait til next year! If ever you want to put a smile on your face, and joy in your heart, join a Buddy Walk somewhere. You'll be glad you did!
Posted by punkymama at 12:53 PM