Having a Child with Down Syndrome Part V: Changing Eyes

Copyright © 2009 Steve Hawley, All rights reserved.

Familiarity, it is said, breeds contempt, but I don’t think this is the case at all. Before Alice, I had limited exposure and a fair amount of ignorance with Down syndrome. I knew the outward physical signs and really not much more. Like many people, the differences stood out and looked odd and I had a fair amount of fear.

When Alice was born, I read up on all the common phenotypes (and more), so I would know what I was seeing with my daughter. Low muscle tone? Check. Epicanthic folds? Check. Nucal fold? Check. Brushfield spots? Nope. The list goes on and on.

Over time, like I mentioned in Part I, I’ve gotten good at spotting people with Down syndrome, and the oddest thing has happened over the past six years. Instead of regarding with curiosity, I see people with a sense of warmth and fondness. Alice has shown us so much love that we look for that in other families as well. It also makes me think of two things that happened the first year that we went to the Massachusetts Down Syndrome Congress’ annual convention. At lunch, we sat at a table with complete strangers, including a young woman named Tracey Newhart. Tracey had recently been the subject of a number of news stories because her high school career spanned the transition to Massachusetts’ MCAS exam as a requirement. In brief, she was denied her diploma and had her acceptance to Johnson and Wales rescinded. Awful. Tracey was quiet and a little nervous. I had just finished feeding Alice, who had just turned 1, and I asked if Tracey wanted to hold her. She lit up like a Christmas tree and it was terrific to she the joy on her face. Tracey holds a special place in my heart.

Later that day between sessions, Alice was fussing and a young man named Raphael came up and picked Alice up and soothed her before putting her back. He had violated typical social boundaries, but I didn’t feel he was a threat and he was terrific.

Yesterday, we went to our local DS resource group’s annual picnic – our 6th, and in the first we were still mourning, but now I look forward to seeing the other families, but most importantly to see the other kids. Now, instead of seeing a collection of phenotypes, I see some of the most beautiful kids on the planet. I see kids with differences, yes, but mostly I see the smiles and the laughter and the other emotions.

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