Living with Quiggles: Coping With Children With Quiggles

Most people know someone who has spent many months, perhaps even years, waiting to have their first child.  Depending upon the soon-to-be parents' outlook (and in fact the values of the entire extended family) there is usually a tremendous set of expectations awaiting this new little human even before an embryo is formed - expectations that he or she will grow up to be a cheerleader, a football hero, a rocket scientist, the first college graduate in the family or simply the first person in the family to speak English without an accent. Whatever these expectations are, they are there as sure as the sun rises in the East. Then finally the magical day arrives and a few pounds of kicking, screaming energy is born. However, in some cases the newborn has brought something unexpected with them into the world - a Quiggle.  The Quiggle could be blindness, hearing loss, toes connected by webbing, a bladder that exists outside the body, the lack of an opening to allow passage of fecal matter, or dozens of other possibilities that the shocked family has never heard of until whatever their Quiggle actually arrived on the planet. I once sent a birthday card to a friend that read: "Surely the stars danced in the heavens on the day you were born."  My family did not dance on the day I was born.  When I was a young child my mother told me that they had felt punished and at fault for my Quiggle.  It took me until somewhere around my 45th trip around the sun to actually see my parents as having had a human reaction to a child with a Quiggle...and that in fact although their reaction was about my imperfect body, it really had nothing to do with me as a person. None the less, reactions of a family can shape a child's personality and future - from the funny and the mundane, to character flaws and personality strengths. In my own case, one of my mother’s reactions led to a very unique aspect of my early childhood.  Like the cartoon character Linus, I had a different relationship with blankets for most of my early life.  It began almost immediately upon my birth when my grandfather, a tailor, and my mother, jointly decided that he'd make a zip-up blanket in which to completely encase the baby from the neck down.  This tactic was to guarantee that no one, as my mother told me when I was older, would ever lean over my crib or pram and say, "oh, the poor thing".  She knew instinctively that the verbiage of stigma is easily incorporated into one's identity and mother was nothing, if not determined, to protect me from stigma.