Now that I can relax a little more about Miss Banana's health since her heart surgery is over, I find myself pondering more and more about how to be the best for her--and for others with Down syndrome. I have dipped my toes into this realm, but I haven't really had a moment to embrace advocacy fully. (Part of that is because we are still in the moving process and I'm hoping life slows down once we are fully settled into our new home.) As I think about it and read other blogs/opinions/experiences of parents of kids with Ds, I have come to realize there is SO much ignorance, misunderstanding, and just plain old stereotypes about Down syndrome in our society, that I am overwhelmed. But when I look at Miss Banana--I want her to have the best, be surrounded by the best, and of course to be shielded from any harm. When people say things to me that are incorrect (or when they use the dreadful r-word) I find myself weighing my options--should I correct them or just let it go? When people stare, do I tell them Miss Banana has Ds, or do I just assume that they are admiring her for the darling little lady she is? When people say things that they think are helpful/comforting but are actually horribly offensive, is it worth the emotional energy to explain the offense? As these questions and other swirl around, I have realized that advocacy is not a simple thing--it is a constantly upwardly evolving process...it is something I need to become. I read a post of a dad whose daughter has Down syndrome, and he said, "She requires you to deal with who you are; you cannot pretend, pretense means nothing." And I totally agree. As I deal with who I am, I am committed to be an advocate so Miss Banana and others with Ds are accepted, included, and embraced into society. Miss Banana, I promise you I will be who you need me to be.
I'm a Midwestern girl who's lived in Missouri, Utah, Missouri again, Nebraska, Mississippi and Iowa. This is my story of life with my farmer-turned-professor husband, two exceptional little boys, and one extraordinary little girl who happens to have Trisomy 21, or Down syndrome. The stories you are about to read are all real; I couldn't make it up if I tried.