After dinner one Saturday night in May, Ken and I came up from the T Stop at Kendall Square to Main Street, when a shimmering glow in the skies made me look up. “Wow, almost 8 pm. Not exactly the golden hour, but there’s still light! Nice. ”
I squeezed my husband’s hand as we strolled along while taking in the mesmerizing beauty of the hour. Then out of the corner of my eye, a little girl caught my attention. “ 爸爸 …” (“father” in Chinese) her sweet soft intonation got my ears hooked. I cocked my head curiously to look at her. Oh… my heart froze. She rolled her wide-set eyes, staring at the man sitting next to her, while asking…
“爸爸 , 为什么 没有太阳? ”
“That’s sad. “ Ken saw her face. “She must be, three years old or something?” He wondered.
“Did you hear what she said?” Ken has studied basic Mandarin Chinese for a few years.
“No, what did she say?”
“Ba Ba, why is there no sun?”
“Aww….” He sighed.
We both felt pretty torn up inside because of her face. She is a child with Down Syndrome. We never heard her father’s answer as we’d already walked too far ahead at that point. But we began discussing how sad for the child, and how tough for her parents as time goes on. Our hearts and minds were filled with sympathy because we felt sad and sorry for her. We had completely forgotten what got our attention in the first place. Her sweet soft voice revealing a personality. And her question. Her question! “Why is there no sun!?” She clearly saw the heavenly beauty as we did, and she expressed her awe and wonder with a critical thought which is, in essence – I see light, why don’t I see the sun? Where is it? Her query and her articulation reveal a purely probing, deeply searching, and simply beautiful mind. Why isn’t there sun when there is light?
But that’s not how I felt when I first saw her physical features. I automatically assumed she didn’t understand sunset had passed because it was 8 p.m. I had associated her Down Syndrome with mental retardation. I felt sorry for her. That was my snap judgment. O boy, how wrong I was!
I looked up sunset time for Boston on the Internet for that night (May 26th) – it was 8:09 pm! So whatever time it was exactly when we became enthralled with that eerily beautiful glow, it was just before or after sunset. We were in a twilight zone!
What a profoundly beautiful and brilliant question for a child to raise! Once I recognized that as a distinct possibility, I felt happy for her as an intelligent and curious child.
I don’t know if she or her father are Chinese even though she was speaking in Mandarin Chinese. But I couldn’t help but wonder if their ancestral roots are in China and how children with Down Syndrome are treated there.
This is what I found on Weibo.
That article also cited Chinese State Media CCTV as urging citizens to understand and not to discriminate against children with Down Syndrome. However, many parents continue to choose abortion once prenatal screening suggests a high likelihood of Down Syndrome in the unborn child. They don’t want or can’t afford to raise a child with disabilities. 98% of abandoned children in China’s orphanages have disabilities. I can only imagine how incredibly heart-wrenching those choices must have been for parents who must decide what is the right thing to do for the child and for themselves.
More than twenty years ago, my mother’s younger sister Irene had to make that decision with her husband when prenatal imaging results indicated a fetus with down syndrome. They could choose to abort, but they didn’t. Their son has since grown into a healthy happy young man. But the brunt of the complaint and discrimination had been directed against Irene for producing an “abnormal” child.
Our idea about what’s normal or abnormal can evolve and take on a whole new dimension if we notice our own snap judgment and seek to see beneath the surface. The brief encounter with that little girl at Kendall Square during the twilight hour has not only piqued my curiosity about the world of the physically disabled, but also opened my eyes to my own handicapped view of their mental capacity – not to mention my ignorance the sundown time or twilight hour in May!
True beauty is not skin deep – it exists within one’s mind and heart.