March 21, 2013 at 7:32 AM ET
On March 21, we mark World Down Syndrome Day — an opportunity to draw much deserved attention to a group of wonderful people that are contributing to their communities in exciting ways. For me, this day is personal; it’s a chance to remember and reflect on an individual who has had a huge impact on my life, my Uncle Pierce.
Pierce Franklin Long, Jr. was born on July 5, 1933. He was my mother’s older brother, my grandparents’ first child, their only son. Because he was born so close to the Fourth of July, my grandmother used to call him, “my little firecracker.” And it’s true that Pierce always sparkled with life and personality, with humor and charm.
Pierce was born with Down syndrome, but back then, the doctors didn’t really use that name for this condition. Attitudes were different, medical knowledge woefully incomplete. My grandparents were told he would never walk or talk, or be like any other little boy. They were told he likely would not live into adulthood. It was common practice then to put a child like Pierce in an institution.
My grandparents had a different idea.
Because of their vision and determination, Pierce grew up the center of love, attention and devotion in a warm and loving family. When his two little sisters came along (my mother one of them), they adored him, protected him, learned from him and taught him. He flourished. My mother says she can remember the elation the family felt when Pierce first learned to tie his shoes, to tell time, and later to read and write. These were milestones then. Today, I marvel at all that people with Down syndrome are able to achieve. I wish my grandparents were alive to see it.
When I was in high school and college, my grandparents and Pierce came to live with our family. I feel so lucky to have spent those years with him. He had many interests and passions. He was a devoted basketball fan – prone to wear his favorite basketball uniform day after day. He was affectionate, always ready for a hug and a kiss. Full of impish humor, he enjoyed teasing my sister and me, by asking us repeatedly how old we were, then guessing wildly inaccurate ages just to make us laugh. (“Are you 36?” he would ask us little girls with a mischievous smile.)
His nickname for me was “Vinny,” and he had a way of charming everyone around him. When I was a self-absorbed teenager, breezing past him or constantly on the phone, he would call out, “oh Vinny, your darling Uncle Pierce is talking to you!”
He was sensitive and emotionally wise. When my father died suddenly, our family was shattered. Sometimes, it was only Pierce’s simple kindness that could soften our grief. “I remember Charlie,” he would say. “I’ll say a prayer for him.”
Pierce reminded me every day what matters in life: goodness, gratitude, enthusiasm, warmth. He lived to a ripe old age with many friends and admirers. This day is close to my heart because he is close to my heart, and always will be. I hope people will take the opportunity to get to know those with Down syndrome who are living, working and like my uncle did, flourishing in their families and communities.