By Ursula Hennessey
A mom wrote an article for the New York Times about a month ago that stuck with me. Her son was born with a cleft palate and lip. She wrote about learning the news, coming to terms with it, and, finally, feeling ambivalence knowing that the cleft palate – which she had grown to love – would disappear with planned surgeries. How is it possible to grow to love something like that?
I’ll tell you how.
When we first learned from my doctor that Magdalena would be born with Down syndrome, I did the first thing everyone does when they get unexpected and troubling news: I hopped right on Google. The pictures of people with Down syndrome I found there were so hideous to me, so revolting, I turned away and cried. Those are hard words for me to write, but they accurately describe my earliest memories of that time. I did NOT want my child to look like those pictures. Repeated exposure, via pamphlets and books, did nothing to make the feeling go away.
But the most amazing thing happened and has continued to happen. All of my little Magdalena’s Down syndrome features became more than dear to me. I am actually sort of obsessed with them. I kiss her toes, which are short and spread apart. I stare for long stretches into her eyes, totally mesmerized by their neat, flat shape. I love to play the “hand-sandwich” game with Magdalena’s teeny tiny hands, her short fingers so much more lovable than long, lean ones. Her tiny ears, her hop-along-Cassidy hitch when she walks because of her mismatched leg bones, the protruding tummy and short arched back, her thick thighs – these are qualities of rare wonder for me and my husband. We chuckle and lovingly roll our eyes when we catch a glimpse of these unique and beautiful traits.
Before Magdalena was born, I was the type to move a few seats away from the mumbling “crazy guy” on the bus. I avoided the grocery store line staffed by the checker with the speech impediment. I would avoid eye contact with people in wheelchairs. I definitely steered clear of people with Down syndrome. I wouldn’t say that they disgusted me, by any means, but neither did I think I was a particularly bad person for feeling uncomfortable.
One of the many miracles of our life with Magdalena is freedom from this terrible feeling of unease. I didn’t know how deeply I was affected by it until I realized it was gone. I no longer look away or tighten up when I’m confronted with disability. I am perfectly comfortable saying, “Could you please repeat that?” when I don’t understand what someone has said because of an impediment. I’ll happily listen to a rambling, kooky tale on the bus. I’m in no rush. I smile in delight, now, and say hello to people with Down syndrome and their family members.
My life is richer for these experiences. So I understand the strange and contradictory feelings of the mother of the child with the cleft palate, just as I understand the sudden impulse to look away from things that appear to us to be grotesque aberrations or tragic afflictions.
But when we do look away, when we do cross the street, we reveal that the true disability is ours.