October 25, 2012 7:49 AM

A Little Extra - Down syndrome awareness

Jonny headshot color.jpg
A little extra
Barbara Curtis

October is Down Syndrome Awareness Month.

My son Jonathan has a little extra. A little extra enthusiasm, a little extra innocence, a little extra charm. Oh, and did I mention an extra chromosome? The one on the 21st pair that inspires so much fear in parents-to-be.

I suppose at one time I was fearful about Down syndrome. But in 1992 when they placed the blue-blanketed bundle in my arms and I could see he looked -- well, just a little different -- I actually felt a sense of awe. Here will be a challenge -- so many things to learn.

In this culture, for a parent without one to see something positive in a child with Down syndrome requires a paradigm shift, I know. But if my counterculture years taught me anything, it was to question prevailing attitudes. I'd really never liked the dread surrounding Down syndrome, clouding the horizon for still-waiting-for-test-results expectant parents.

In years since, I've met many parents whose prenatal diagnosis was accompanied by pressure to terminate the pregnancy and "try again." Professionals are quick to point out the burdens of having a child with trisomy 21 -- possible medical problems, heavier emotional demands, a child who is "less than."

Which makes it hardly surprising that 90 percent of prenatal diagnoses today end in abortion.

Parents who search to learn more -- as well as those surprised with a postnatal diagnosis -- must be surprised by the hope they find when they connect with the real professionals: parents of kids with Down syndrome. For no matter how devastated they may have been to receive the news, parents almost invariably come to treasure the gift that they've received, as in Emily Kingsley's famous essay "Welcome to Holland": So you planned to go to Italy and landed in unexpected territory. At first you're disappointed. Then you notice the windmills and the tulips -- beauty you never expected to find. You discover it's not a bad place after all.

My own son Jonny is a hip and clever guy with a gift for acting, dancing, humor and making friends. At home or school he is the first to offer help, to comfort someone who's down and to laugh uproariously at the punch lines.

For 20 years he's taught me -- and others around him with hearts willing to learn -- how much more there is to life than intelligence, beauty and "perfection."

Read more at Catholic Herald


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An truly inspiring post. Puts Ann Coulter's recent remarks in their proper place, in the garbage bin.

Posted by: Patricia | October 26, 2012 4:55 PM

I've don't often comment but I love following your blog. I recently learn of a very interesting organisation that helps families adopt children with disabilities from other countries.

I was wondering if you know about Reeces Rainbow. It is an organisation that help to raise money for people to adopt children with Downs and other special needs.

They are currently close to winning 50 000$ that will be split in between 10 orphans in 10 different countries to help with their adoption. Can you help by voting for them? It is a simple login to facebook.

The voting ends on October 31st.

There are such wonderful stories of families literally saving the lives these forgotten children.

Thanks for the wonderful blog.

Posted by: Chantal Chauvet | October 27, 2012 1:05 AM

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