“ What I found is that again, that time of diagnosis and the time of birth is often very difficult and upsetting for people. Kids with Down syndrome are, by and large, quite affectionate and relatively guileless and frequently, the attachments to them grow and deepen. And the meaning that parents find in it grows and deepens. So the story that epitomizes it perhaps was of Tom and Karen Robards, who were a couple I met in New York who had gotten involved in changing the way education services are delivered to people with Down syndrome. They set up something called the Cooke Center and they did really noble and heroic work in that arena and their son is now 30.
And I said, 'Look you've given your lives to this.' I said, 'Do wish you wish you'd never heard of Down syndrome? Do you wish you could make it go away?' And his mother said, 'You know for our son, David, I wish I could make it go away because for David, it's a difficult way to be in the world. And I would do anything to make David's life easier.' She said, 'But speaking for myself, while I would never have believed 30 years ago that I would get to such a point, speaking for myself it's made me think so much more deeply and appreciate humanity so much more broadly and live so much more richly. That speaking for myself, I wouldn't give it up for anything in the world.'
And while she articulated that idea with particular eloquence I found it was not an infrequent refrain — that most parents had become very attached to their children. And at some level I kept thinking, 'But surely you'd rather have children without Down syndrome?' And then I thought people become attached to their children with whatever their flaws are. I'm attached to my children with whatever flaws they have and if some glorious angel broke through the living room ceiling and offered to exchange them for other better children, I'd cling to my kids and pray away this specter.”
“It is not pleasant to experience decay, to find yourself exposed to the ravages of an almost daily rain, and to know that you are turning into something feeble, that more and more of you will blow off with the first strong wind, making you less and less. Some people accumulate more emotional rust than others. Depression starts out insipid, fogs the days into a dull color, weakens ordinary actions until their clear shapes are obscured by the effort they require, leaves you tired and bored and self-obsessed - but you can get through all that. Not happily, perhaps, but you can get through. No one has ever been able to define the collapse point that marks major depression, but when you get there, there’s not much mistaking it.”
“Perhaps the immutable error of parenthood is that we give our children what we wanted, whether they want it or not. We heal our wounds with the love we wish we'd received, but are often blind to the wounds we inflect. ”
“There is no such thing as reproduction. When two people decide to have a baby, they engage in an act of production, and the widespread use of the word reproduction for this activity, with its implication that two people are but braiding themselves together, is at best a euphemism to comfort prospective parents before they get in over their heads. In the subconscious fantasies that make conception look so alluring, it is often ourselves that we would like to see live forever, not someone with a personality of [their] own. Having anticipated the onward march of our selfish genes, many of us are unprepared for children who present unfamiliar needs. Parenthood abruptly catapults us into a permanent relationship with a stranger, and the more alien the stranger, the stronger the whiff of negativity. We depend on the guarantee in our children's faces that we will not die. Children whose defining quality annihilates that fantasy of immortality are a particular insult; we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do. Loving our own children is an exercise for the imagination. ”
“Ability is a tyranny of the majority. If most people could flap their arms and fly, the inability to do so would be a disability. If most people were geniuses, those of moderate intelligence would be disastrously disadvantaged. There is no ontological truth enshrined in what we think of as good health; it is merely a convention, one that has been strikingly inflated in the past century. ”