This July a joyous event took place at our home. A family reunion of my wife’s siblings, cousins and aunts and uncles all gathered together in rural Massachusetts. We never see this gang all together. There was a fabulous wedding down in Costa Rica a few years back and everyone had quite an adventure on Tamarindo beach. There have been other occasional affairs but with schedules what they are and people living far apart (one cousin has a wife in China who is waiting for a U.S. visa but that’s another story) and different family arrangements all around getting a family reunion scheduled is a big challenge. I’ve given up trying for my side of the family. But there is one thing that binds us together. This year’s reunion was all about celebrating the 45th birthday of Lisa Blatz the oldest child in my wife’s uncle’s family. Don’t worry about the details. Lisa was born with Down’s syndrome 45 years ago. It was a shock to the family that I will not even begin to characterize because 45 years later Lisa is the glue for this entire family. If she calls a birthday party everyone shows up. She keeps track of everyone. She remembers everyone’s birthday. During last summer’s birthday party/reunion there were few dry eyes. When people weren’t sobbing with gratitude over what Lisa has brought to the family they were just busy having fun and enjoying everyone’s company.
All this is by way of pointing out how the experience of Lisa in the world has been transformative. It has certainly transformed one family’s view of life itself, transformed one family’s idea of “normal” so much an obsessive topic for modern medical science, and for everyone in this family it has eliminated forever the impulse that through medical science one might choose to do something that would mean that someone like Lisa would never be born. My wife and I were given the option to undergo genetic screening for all five of our children. We refused. The only conditions that they even assured they could absolutely predict for were conditions we could not ever consider terminating a pregnancy for. The first was Down's and Lisa was our personal family example that nothing about Down’s is abnormal even if her chromosomes look different. The second was spina bifida, a condition that results in paralysis something that in my family is not abnormal as I have been a paraplegic for more than 30 years.
This idea of normal and the assumption that clinging to it somehow improves the quality of life is such a deeply flawed illusion, it seems to me. If anything, dealing with life’s surprises, and learning from them is not only a normal aspect of life itself but essential to understanding its meaning. I applaud the wisdom of our young guest Amy Becker and her husband for embracing the “normal” of their oldest child with Down’s syndrome and choosing to have such a progressive approach to genetic testing in their own lives. Is it abnormal to ignore medical information that offers only the illusion of control as parents? If we have not the capacity to learn that what we might have once feared as a tragedy can instead be a joyous and rich experience then we have cut ourselves off from wisdom. I would have cut myself off from the possibility of Lisa’s 50th birthday party already on our calendar.