I once had an angel in my life, and 33 years ago today that angel departed me. She was born in May 1975 to my sister and her husband, their first child of eight. It was immediately apparent she was special, and within hours we knew that she had been born with Down’s Syndrome. Worse was to come when her difficulty “pinking up” or oxygenating her tissues lead to a diagnosis of a congenital heart defect. I was only a child myself, and didn’t understand her condition. All I knew was that she was special to me. I guess I connected to her in an obvious way, and my sister granted me the honor of being named her godfather. I remember standing at the baptismal font in church as she was baptized, oil and ashes rubbed on her tiny little forehead by the pastor’s meaty paw, feeling the gravity of the responsibility on my slim shoulders through the incomprehensible Latin and haze of incense.
For four years I grew up with her, and while her development lagged behind children without the condition, she excelled in providing everyone she touched with unconditional love. I almost hesitate to use that phrase here because it has been so debased over the years, but those of us who were touched by her or those like her, no other words will do. I was her uncle but also her playmate, protector and care giver. For four years she shared this world with me and taught me lessons that I’m still struggling to master decades later. She was “retarded” yet understood Life in ways that I can only glimpse in dreams. She lived in the moment as if each was precious and timeless.
Those moments ceased on January 22, 1980, on the operating table in an attempt to mend the heart that she had been born with, the outcome shredding all the hearts of those of us who had been blessed with them. My mother still cries remembering her, and the tears flow whenever I allow myself to remember the beauty of her smile and the tinkling of her voice, something that I allow myself to do more as I get older, Time proving just how special those moments spent with her were. My sister changed, and her view of me changed and things have never been the same since. She went on to have other children and a full life of her own.
At least I had those 4 years. Sure I wasn’t old enough to truly appreciate them, or perhaps I was because at that age I had yet to be corrupted by Cynicism, Failure, and Knowledge that inevitably came. But they are still within me, and the man I have become, the values I hold today were influenced by a little girl with long brown hair who I swung through the air long ago, filling it with her laughter that I can almost hear now.