This has been my dilemma as Marcus and I have met each new group. Should we talk about Down syndrome? And to what extent? It is, after all, Down Syndrome Awareness Month, and Marcus does happen to have Down syndrome.
As the world cheers on Madeline Stuart, the Australian model with Down syndrome who just announced she'll walk the runway at New York Fashion Week, I'm cheering too. Yet I'm also feeling uneasy, because negative perceptions of people with disability are rearing their heads.
These unique photos are Alan's heartfelt contribution to the world in an effort to draw attention to the reality that raising a child with Down syndrome, though difficult at times, is not a burden but a joy to him and his family.
I wondered if I would lay claim to those words -- not just string them together, but lay claim to their meaning. Lay claim not just to my daughter, but to her extra chromosome. Because cognitive disability was hard for me. Very, very hard.
The words, the images, speak for themselves, though they cannot speak for all those who live with Down syndrome. Still. It might be about how we perceive, what we choose to value, if we can live with and even see the beauty of asymmetry.
People who have Down syndrome are just like the rest of us in that they don't want to be viewed as different. They want their identifiers to be those of brother, son, daughter and friend (perhaps even husband or wife), rather than a genetic condition.
October is Down Syndrome Awareness Month here in the United States. I'm personally not out to promote awareness anymore, because we are there already. We are aware that people with Down syndrome are the same as people without.
When my daughter was diagnosed with Down syndrome, I was given a list. A list of potential features and problems to expect. This list is cold, emotionless and almost comes across as grotesque if you are reading it with fear already in your heart.
They said babies with Down syndrome can't nurse, and instead they offered me a bottle. But I was determined and I'd nursed four other babies. Mary Ellen latched on immediately and nursed like a champion. I knew right then that I would need to advocate for our daughter for the rest of her life.
My mother and this relationship we had. So tested, yet so strong. More than anyone else, I cared about what she thought. Maybe because I knew I was so much like her. Maybe because if I saw strength in her, I knew I could be strong too.
When you start thinking about becoming a Mom the first things that pop into your mind is whether you will have a boy or a girl, what will the name be and what they will be when they grow up. You don't stop to think will he/she have special needs! Down Syndrome!