The passion for such children contains no ego motive of anticipated reciprocity; one is choosing against, in the poet Richard Wilbur’s phrase, ‘loving things for reasons’. You find beauty and hope in the existence, rather than the achievements, of such a child. Most parenthood entails some struggle to change, educate and improve one’s children; people with multiple severe disabilities may not become anything else, and there is a compelling purity in parental engagement not with what might or should or will be, but with, simply, what is.

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