Radiating Light: Down Syndrome Awareness Month
As a part of National Down syndrome Awareness Month, I’ve been thinking about people with Down syndrome, the unique gifts that this Tribe with an extra chromosome brings with them, as well as the marvelous contributions they make to the world. There are so many – both people with Down syndrome and unique contributions being made:
Zhou Zhou, the internationally acclaimed symphony conductor with Down syndrome. Pablo Pineda, the charismatic teaching expert, who graduated from a major Spanish university and is now a movie star. Karen Gaffney with her astounding athleticism. Sujeet Desai, the highly accomplished musician. Michael Johnson and Bernadette Resha, talented artists. Lauren Potter of Glee. Monica and David , young couple in love. The German dancer, Laura Bruckmann, as photographed by Conny Wenk.
These are fabulous stories of select adults with Down syndrome, busy making stunning contributions to the world. Stories that I grasped and clung to after I found via amniocentesis that my unborn daughter would be coming with an extra chromosome. Stories that helped keep me from drowning when my whole body was submersed in great vats of grief usually reserved for those who have died; not for mothers of babies who haven't even been born.
These stories settled in a delightful collage, speaking a new truth that people with Down syndrome have everything to offer. That people with Down syndrome bring unique gifts and talents to the world, just as all human beings, each and every one of us, does.
My daughter Moxie is now two years old. She is a beautiful child. Smart, capable, lively, with a great head of hair.
As I travel a little farther down this road of raising a child with an intellectual disability, I find myself spending less time on the stories of those with Down syndrome who have made unique contributions to the world that are on par with people that have the typical number of chromosomes. What is unique about these stories, after all, other than these accomplishments are being made by people with Down syndrome – an intellectual disability?
Rather, I find myself more drawn to the unique differences that our kids with Down syndrome bring with them by way of the gift of that extra chromosome. I am interested in the "distinctive normal" that our kids create by simply being themselves. The stories that are not on par with the typically developing world, the stories that speak of the remarkable qualities that people with Down syndrome often have.
Like the story about the group of kids with Down syndrome running a race, one kid fell down and everyone stopped and went back to help. And then continued the 'race', together. Or the story told to me by my daughter’s physical therapist, of her niece who can walk into a room and immediately sense who is unhappy, and chooses to sit with that person, brighten their spirit.
I am interested in these types of stories, and not just for their heart-warming potential; I am interested in them because this is a group of people we talk about in such stories - a group. What happens in that gift of the extra chromosome? What is it, exactly, that seems to add with it an extra dollop of care to the recipient? Why do people with Down syndrome seem to care so much about other people?
I admit that I am hesitant to delve too deeply in what appears to be "normal" for people with Down syndrome, not wanting to promote or instill stereotypes. And yet, across the Tribe there appears to be that genuine concern for others. Across the Tribe, there appears to be a stupendous affinity with music. Rhythm seems to roll from the soul of those with a little extra. Artistic talent, a joyful sense of life that needs to be happy also seems to be ever-present.
Not that people with Down syndrome are happy all the time (check out my daughter when she's upset for more of that!); not that people with Down syndrome smile all the time either. But I have noticed that when people with Down syndrome do smile, and when happiness is radiated out of them, it's contagious, it's delightful, it bright and it's as sparkly and beautiful as it comes.
And that is perhaps the best gift - the most unique gift - that people with Down syndrome bring: gifts from their heart that have the potential to make the world captivating, caring, delightful. Exquisitely unique.