I’m the father of a child who has a rare chromosomal disorder, trisomy-18. It affects about one in 5,000 births and leaves children with profound mental and physical disabilities. Life expectancy is harrowingly brief; some 90% of affected infants don’t see their first birthday.
There are many reasons why it’s important for people to know about this syndrome — to encourage more research, advance better policies for families coping with it, to “raise awareness.” But when I consider my daughter Esprit, I’m interested in a specific kind of awareness, the kind that helps people feel comfortable interacting with her. Medical details and statistics don’t put anyone at ease around a severely disabled child. But a parent’s perspective might.
Chances are, you and your children will encounter Esprit or a child who is similarly disabled at a store, or in a park. Your child will be struck by Esprit’s appearance. Typical for trisomy-18 kids, her head is small, her eyelids droop and her ears are low-set. Add the wheelchair and the braces on her feet and midsection, and you’ve got quite a sight. Older children pointedly refrain from staring (usually with a furtive peek or two), but younger children gape uninhibitedly. Embarrassed parents will try to distract their child, or drag him away, probably delivering a “don’t stare” lecture once out of sight. But you can’t blame a 4-year-old for staring at a child who looks different. His curiosity is natural.