We Know Not What We May Be

During the winter break, I tried spending as much time as possible with my family. I treasure how, at the start of December, the day after we put the Christmas tree up, my daughter came downstairs, threw down both her hands, and, exasperated, said, “Daddy–where are all the presents?!” A recent post by Amy Juila Becker got me thinking about an ancient lesson revealed in this the holiday season.

Amy Julia is an author, a blogger, and a mother of three. Her oldest, Penny, happens to have Down syndrome. Penny’s 7th Birthday coincided with the Christian marking of Epiphany, when the Magi visit Jesus soon after his birth. For believers, Christ is revealed to Gentiles for the first time, which is a surprising revelation in that this was to be the King of the Jews, and he was expected to be a great warrior, not a child born out-of-wedlock in a manger. This prompted Amy Julia to write in her most recent post how she resists the temptation to put her children into a box of her own construction, and instead allow them to reveal their full nature to her, as they are constantly surprising her. Her insight echoes the wisdom of literature, philosophy, ’80’s classic movies, and even medical ethic opinions.

Last year, while visiting Juliet’s resource classroom, I noticed a very apt poster hanging on one of the walls. It was a stylized quotation (copied above) of Shakespeare’s from Hamlet, “We know what we are, we know not what we may be.” I expect all of us has appealed to this insight when others have tried to put us in their box. Whenever someone arrogantly predicts what our future will be based on limited knowledge, a natural response is to say they don’t know what they are talking about because who knows what each of us are capable of.

This same thought was expressed by the philosopher Soren Kierkegaard. He wrote, “When you label me, you negate me.” This is so because by trying to define someone, you are equally defining what that person is not. So, in high school, we try to shirk the labels parents, teachers, and peers try to assign: jock, prom queen, geek. Indeed, this is the entire message of that modern classic of philosophical thought, John Hughes’ The Breakfast Club.

In the context of prenatal testing, labeling happens a lot. What was once seen as a baby at the first or second ultrasound, is soon transformed into a fetus with Down syndrome. Academics criticize this process as being reductionist: reducing the complexity of a life to simply a label: a woman, a man, a cripple, a supermodel. To prevent this risk, the American Congress of Obstetricians & Gynecologists’ issued Ethics Committee Opinion No. 321 (coincidental, that “321”). In the opinion, obstetricians are cautioned that they “must keep in mind that medical knowledge has limitations and medical judgment is fallible and should therefore take great care to present a balanced evaluation for both the woman and the fetus.”

And, so, in this time of making resolutions, which are decisions to shape a person’s future life, this wisdom that permeates human experience should be kept in mind. A diagnosis provides a label, and therefore risks negating other salient features of the developing fetus. Advice about Down syndrome should appreciate that one person’s limited exposure does not reflect the full array of possibilities available to a life lived with Down syndrome. The Resources tab shares those medically-reviewed and approved resources which medical professionals and patients alike may access. If they do, they will remember that while a diagnosis says one thing about what is, it does not say everything about what may be.