All is not quite right

Common baby gadgets were transformed by our situation into quasi-medical equipment. We found that the walkie-talkie set used by most parents to hear when their napping children awake could monitor Aidan's breathing. By turning the receiver to maximum volume, we could listen to the reassuring puffs of air moving in and out of his chest. All around the house, wherever nap-time chores would take us, the little white and blue speaker gave forth the staticky hiss of his breath. It was an odd sort of reversal: we straining to hear the sounds of sleep while others waited for the first signs of wakefulness.

The baby books were similarly remade into their opposite; instead of providing a record of progressive development, for us they chronicled, in excruciating detail, our slow realization that Aidan was not gaining basic motor skills and cognitive capacities. At 9 or 10 weeks old, the books told us, Aidan should have been able to roll from his side to his back with some facility. By 3 or 4 months, he should have been grasping for objects. At 5 or 6 months, he should have been able to bear the weight of his head and shoulders on his forearms while lying on his stomach, an important prelude to crawling and standing.

None of these things was happening, though he would occasionally get himself from his side to his back, but never from his back to his side. Once, when he was about 3 months old, while prone on a large flowery pillow next to Maureen's mother on the living room couch, he raised up his head and turned it from side to side. It seemed at the time that it might be a breakthrough, the beginning of the wondrous chain of physical actions that culminate in the full range of boyish activity. But no. He hardly ever repeated the move in quite the same way.

Our ability to gauge his progress, or lack of it, was hampered by the fact that this was our first child. We had never been through, in such an intimate manner, the stages of early childhood development. Without the experience that would have provided certain points of reference, we watched as the days slipped by with virtually no physical or cognitive change, unable to appreciate fully the accumulating signs of profound limitation and not wanting, really, to know just how far behind he was falling. We were too afraid to draw the increasingly evident conclusion that Aidan would be seriously incapacitated.

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Aidan is 9 years old now. He cannot see, stand, walk or speak. Maureen and I have followed him through experiences we could never have imagined when we were just starting out, fresh-faced new parents full of expectation for our firstborn son. We have seen too many emergency rooms and intensive care units and postoperative floors and doctors' offices.

But we, and he, have done more than just survive. We have learned, from his silence and stillness, that good lives take myriad forms, that what appears to be stultifying limitation to some is simply a reordering of the most basic human needs and rhythms. He sleeps, wakes up, takes nourishment, has friends, is loved and can love in return. His severe disability has transformed our worldview in ways that call to mind a passage from fourth century B.C. Chinese philosopher Chuang-tzu, for whom the concept of the "Way" encompassed the complex unity of nature:

"The blade of grass and the pillar, the leper and the ravishing beauty, the sniveling, the disingenuous, the strange -- in the Way they all move as one and the same."

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