According to the World Health Organization (WHO) and the World Bank, five percent of the world's children have a significant physical or mental disability.
This is not an insignificant sum. It represents tens of millions of children worldwide.
Yet, from the very narrow vantage point of one's own back yard, having a child with a disability can be extremely isolating.
Even in this age of blogs and listserves and online social networks galore.
Yes, there exist an abundance of means to communicate with other adults who have children with disabilities. We can network - and doing so is vital for information sharing and community building - and we can engage in group walks and play dates and substantive workshops.
Yet, for all of this interconnection, when you give birth to a child with a serious disability, you feel terribly, painfully alone. I speak from personal experience of course and don't pretend to speak for every parent out there who has gone through a similiar situation. Yet, I gather from my discussions with other parents with children with disabilities that many of you out there have felt similarly.
I guess it's feeling that your child already, before even being able to perceive the world around her or introduce herself to it, has been labled by society as "the other." The One Not Like Us. Different. Special. Delayed. Slow. Disabled.
And, in truth, my daughter is many of those things. Yet, she is none of them, too. She is unique and glorious and gorgeous and happy and kind and engaging and intelligent and curious and adorable and gentle and I could go on and on. Every day she presents to us a new gift or facet of her personality that we did not know the day before.
Yet, from day one I have had the sense that her life will consist of largely looking from the outside in. Not quite separate but never really fully a part.
But, I am slowly learning that perhaps that is me I am talking about- me as the parent of a child with a disability - and not really her at all. Emma has a community of family and friends. She is embraced everywhere we go. Her father calls her our little Ambassador, because wherever we go, she attracts smiles and kind words and affection and really the most warmth I have ever experienced from strangers.
A few weeks ago, we traveled as family to Spain. We were in Madrid, stepping out of a cab, to go into our hotel on the Plaza de la Independencia. If you've been to Madrid, you know this Plaza- it's large, circular, highly trafficked, and at the entrace of the Parque del Retiro and near the major museums. It is in the heart of Madrid.
We walked out of the cab and while my husband and Emma's grandmother were gathering other items, I held Emma and looked toward the hotel.
I was frozen- captivated by a framed poster in front of our hotel entrance.
On it was the picture of a young girl, smiling from ear to ear. She had Down syndrome. I was stunned- what a coincidence. I said look Emma, look at the pretty girl.
Emma was unphased. But, I was rattled.
Then when I turned to say something to my husband, there was a mother and father, strolling by looking at the picture. In their stroller was a child with Down syndrome. The mother asked me how old Emma was. Her daughter was two. We chatted briefly about their different heart conditions. She wished me well. I did the same.
I looked at my husband in awe- how could this be?
Then, I looked farther ahead and saw dozens of photos on large posters scattered throughout the Plaza- pictures of infants and young girls and boys, of pre-adolescents, all children living in and around Madrid whose parents were part of the Down Syndrome Network of Madrid and who wanted Madrilenos- and all those who visited Madrid - to see their children not for their diagnosis, but for their beauty, their talents, their youthful innocence, their humanity. To see beyond the physicality of their diagnosis and see their essence.
I walked the entire plaza. My husband did the same, taking photos of the exhibit. I ran across various families of children with Down syndrome, some of whom were pictured in the exhibit and standing proudly in front of their photo.
I cried openly and happily.
I have never, in Emma's first year of life, ever felt more of a sense of community, understanding, acceptance, or appreciation than I did in that moment.
Perhaps that is because I felt that Emma was not separate. Not the "other" but instead part of a large, beautiful world where others who looked like her and struggled similar struggles as her were, for a brief moment in time, in the majority. They were the ones on the posters - not fashion models.
After staring at the 120 photos long enough, watching people eat and drink and chat around them, it started to feel like the norm - like images of people with Down syndrome was common place and "normal."
It started to feel like as a parent of a child with Down syndrome, I was in the norm, I was OK.
That is community.