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November 29, 2012

Loving a child on the fringe

(Continued)

PARIS —

This scruff-holding is more than physical; it is medical and mental. After spending her first year of life with serial lung infections, Eurydice evolved a frequently fatal leukemia — another risk factor of Down syndrome, albeit a rare one.

Six months of outpatient blood transfusions gave way to seven months of inpatient chemotherapy. During this period there was no exit from the hospital isolation room for either of us. Several times Eurydice hovered on the edge of death. She lost her long chestnut-colored locks and saw her satin baby chest carved up to make room for three consecutive catheters. Still today, there is a garish scar over her heart across which — either in obedience to a subconscious sense of theater or in memory of the nurses who applied disinfectant to her wound — Eurydice likes to smear blood-red lipstick.

It is sometimes said — and Solomon's book often echoes this bias — that autism is mysterious, Down syndrome is not. Autists are prodigies, introverts, misunderstood; people with Down syndrome are just dumb and dull. And yet, Eurydice has always been mysterious to me. To this day she does not speak — or, rather, she does not speak any publicly recognized language. But she has an enormous amount to say, uncanny capacities for observation, and startling social intelligence. In the French-English-German universe she inhabits, she has invented a vernacular all her own in which she makes orations so self-assured, well-inflected, and precisely punctuated by rhetorical gesticulation that strangers often inquire which language it is she's speaking.

Wherever she goes, she brings people together — imperiously gesturing to cantankerous couples to sit down together and lifting their palms onto each others' thighs, reconciling warring classmates by joining their hands, and charming child-leery adults with flirty smiles and studious imitations of their idiosyncrasies. Her gifts are the opposite of my own: Where I am shy, she is bold; where I am good with (known) words, she is good with drama, dance and music; where I am frightened of groups, she loves them, and the children in her preschool compete hard to sit by her side at lunchtime as the nurses in her hospital petitioned to be assigned to her room.

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