When our daughter Anna Josephe Lazare was born on December 12, 2003, we learned that she had Down syndrome. For the first few days, those attending to us offered us little counsel apparently because they did not have a grasp of the facts. Some felt duty bound to err on the side of the worst case scenario by preparing us for a paralyzing burden. “All I can say is, this is big ... this is big. Your lives are never going to be the same,” one doctor nervously said as he paced the room. With Anna hooked up in the NICU and Mary herself hospital-bound after a difficult delivery, staff tip-toed around us. We were in a hole during those initial hours, unsure if and how we would ever climb out.
Fortunately, we did begin to emerge from our hole within a matter of days. Certain doctors, nurses and social workers at our hospital, one of the finest in New York, ultimately brought perspective to the situation. We quickly learned that Anna was a cause for celebration and that her differences would be manageable, not a burden. Thanks in part to the care given to her at the beginning and the early intervention that followed, Anna now thrives as a happy, alert, bright and interactive girl. Regrettably, however, the lack and distortion of information concerning Down syndrome that we faced before and immediately following Anna's birth, reflects, we believe, a lingering misunderstanding that stands to hinder Anna's and others' pursuit of happy and meaningful lives.
We are sharing Anna’s story in an effort to increase awareness and minimize other families’ anxiety. This would be impossible, however, without going against our nature by bringing to the surface our full range of emotions – from our initial “deer in the headlights” response and feelings of sadness, to the genuine happiness that Anna now brings to her family and friends. This mission will fail if our story creates pity; that is rarely a constructive sentiment. Rather, it is true acceptance and understanding of people with Down syndrome to which we aspire. We hope that Anna’s continuing story – a happy one to be sure – contributes towards this goal.
Like any parent, we wish our children could journey through life at the head of the pack and on a clear path toward their dreams. Anna, however, brings to the forefront something we always knew but never really focused on – nobody’s life is unobstructed and, of course, nobody is free from imperfection. People measure their goals and happiness in different ways. But, everybody willing deserves the chance to pursue their dreams and contribute to society. Such contributions take varying forms, the simplest often being the most profound. On that surreal December evening, it never occurred to us that this child – the child who unexpectedly appeared in the place of the one we had anticipated – would be the source of immeasurable pride and affection, the depth and purity of which could be truly understood only by another parent in the same situation. Nor did we realize that this angel would have the power to improve the lives and perspective so many people.
We would prefer that Anna did not have Down syndrome, a preference that Anna might someday share. But, our lives are happier and more meaningful with Anna (Down syndrome and all), than they were or ever could be without her.
