Linda Clark-Borre

Jon Will’s Gift In Light of Baby Doe

05/04/2012 23:12


Syndicated columnist George Will has written a beautiful piece on the occasion of his son Jon’s 40th birthday today, May 4. He launches his piece in the third person:

The day after Jon was born, a doctor told Jon's parents that the first question for them was whether they intended to take Jon home from the hospital.

Their baby had Down's syndrome. Around the time Jon was born, my experiences with Down’s would have been limited. I do remember my grandparents’ close friends having a son named Howard, who, I was informed in the graceless language of the day, was a "mongoloid." The teenager went everywhere with his parents, and his presence at any event or gathering felt natural to all of us who knew him.  When I visited my grandparents’ Chicago bungalow when Howard was also visiting, he’d politely pull out the chairs at the dinner table to seat all the ladies, including eight-year-old me. I saw him only occasionally, but was in love with him until I turned ten. Howard was a mystery to me: simple, handsome, hardly “abnormal”, and I loved being on the receiving end of his kind attention. He lived a full, happy life until he turned fifty and died of heart disease.

In 1982 I wrote a Chicago Tribune “think piece” on the tragedies surrounding the brief life of the now-famous Baby Doe, a child born with Down’s syndrome who starved to death in an Indiana hospital when his parents refused treatment for the correctable esophageal defect that made it impossible for him to swallow. Baby Doe presented a complex, confusing case; he died six days after the decision to do nothing to treat him.  What happened to the newborn in that small town hospital had a national impact upon medicine, law, and pediatric ethics. The details of that case, so hotly debated and painstakingly laid out, are discussed in this file:

BabyDoe.pdf (111,4 kB)

Anyway, George Will’s column has made me remember Baby Doe, who, if he lived, would have turned 30 years old last month. Today’s technology enables testing and more choice about who is permitted entrance into the world; but still, there are lots of children born with problems regardless of tests, and many decisions to be made on their behalf.  Admittedly, the columnist is a conservative and a pro-life Catholic.  I have been unable to be as iron clad about right to life issues as perhaps I once was, in large part because like many people of a certain age I have seen too much evil prosper and too many innocents suffer. Still I appreciate Will’s sentiment, and the way he looks at the impact of his son’s life in the world:

The oldest of four siblings, he has seen two brothers and a sister surpass him in size, and acquire cars and college educations. He, however, with an underdeveloped entitlement mentality, has been equable about life's sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.

The last six words bring tears to my eyes, because I too would say just that about each of my own four children.

Yes, each child is so unutterably themselves from the instant their eyes open to that first light, even well before that moment. That's just how it is, how it should be, how I too will always think of them.,0,4151670.story