I remember being quite struck by a letter I read to "Dear Abby" when I was about 12 years old from a woman whose friends had recently given birth to a child who was, in this woman’s view, about the ugliest baby she had ever seen. While her initial reaction to this baby ranged from revulsion to pity, she was struck by the parents’ total adoration and love for their little charge. Everything they did indicated that in their eyes, this must be the most beautiful baby in the world. The writer was quite moved and humbled by this, and Abby of course agreed that we could all learn from the example of these parents. I don’t recall the rest of her answer, but in true Dear Abby style I’m sure she reminded her readers that all children deserved to be treated as if they were the most beautiful babies ever born into the world.
When our second daughter Hannah was born after a normal pregnancy and delivery, the only indication that anything was amiss was that her right eye remained closed. Our doctor found no cause for concern, and sent us home from the hospital with a clean bill of health, explaining that it probably got a little swollen during the trauma of birth, and would open in a few days. When that didn’t happen, a specialist diagnosed “third nerve palsy” as the culprit, and we learned that we were dealing with a permanent condition that would likely have a significant effect on her eyesight, including the likelihood that she would never have three-dimensional sight.
We were quite distressed to learn that at such an early age doors were already closing for our child. I remember making mental lists of professions that were no longer in her grasp: fighter pilot, golf pro, wide receiver. In addition, we learned that although she could have surgery when she was older to help correct the drooping lid, her right eye, which pointed down and to the right, would probably never line up properly with her left. I remember my chagrin as I pictured her as a 16 year-old, preparing for the school dance, gorgeous in a new dress, but with the unfortunate eye condition, which of course would be the only thing potential paramours would notice. We would later learn that this was among the mildest of many challenges that Hannah would face, but at the time the revelation was difficult to absorb. One of the joys a new child brings into the world is the sense of unlimited possibilities, yet at just a few weeks of age, limits were already being placed on Hannah’s future.
At the doctor’s instruction, we began patching Hannah’s good eye and taping the lid of her bad eye open, to train her brain to process images from that side. Invariably, when we introduced our new little bundle of joy to friends, neighbors and even strangers, one of the first responses we could count on was some variation of, “what’s wrong with her eye?” A normal enough reaction, but a parent quickly tires of the constant explanations and the unwanted focus on the flaw on the otherwise perfect canvas of their newborn.
“But,” I would ask myself, “what is the right thing to say in this situation?” Years earlier, when I was working at Special Olympics, a young couple who had been long-time volunteers had their first child, and we were all stunned by the news that the baby had been born with Down’s syndrome. Though we all worked in a field dedicated to making the world more caring and welcoming to people with disabilities, we knew only too well that our friends’ lives had just veered abruptly onto a difficult and challenging path. Do you send congratulations and best wishes, or is a sympathy card more in order? I confess that I chose a third and worse option, and made no acknowledgement to them at all, and I suspect I may not have been the only one who avoided the issue in this fashion.
I understood only too well the discomfort people felt when confronted with our new baby and her eye patch, and their struggle to say the right thing. So I remember vividly the day I was standing in our front yard holding Hannah, and my neighbor’s brother crossed the street to say hello and to see the new baby. He was an older Bolivian man, whose shaky command of the English language coupled with my total ignorance of Spanish limited our interactions, but he had always been friendly and kind. I prepared to explain Hannah’s condition to him, but he merely gazed into the blanket that swaddled her and said reverently, “What a beautiful baby.”