Thursday, March 21, 2013

A Celebration of Extra


  Today is World Down Syndrome Day, set aside to build awareness and promote inclusion of those with DS. 
  Like many people, my own awareness of DS was pretty limited—no understanding of even the cause, much less how it might be manifested in different people.  It’s pretty typical, I think, for folks to think about the things differently abled people can’t do, as opposed to what they can.  And it’s very typical—regardless of the circumstances—for us to focus on our differences, rather than our similarities.  We miss out on a lot that way.

I recently mentioned my friend, Kim, and her son, Nathan.  His 16th birthday would have been last week, had he not been taken from this world far too soon.  Nathan was like a lot of kids: sweet, funny, and had a way of making people smile.  He was a picky eater (I used to say one of the few people even pickier than I), enjoyed school, and liked participating in the Buddy Walk.  And he loved Santa Claus.  I mean, seriously, loved him.  I’m a fan of Christmas, and Santa, but I’ve never known anyone who enjoyed it as much as Nathan.  He had Santa pjs that he liked to wear year-round, a Santa beard, and Santa toys.  He even had his room decorated in a holiday theme; Christmas didn’t ever come to an end as far as Nathan was concerned.

And, as you might have guessed, Nathan also had Down Syndrome.  I remember when he was born, Kim was understandably upset.  It isn’t easy to learn that the precious baby you’ve dreamed of for so long isn’t perfectly healthy, and to know right then, in those earliest moments, that his life—and yours—will  never be what you’d imagined.  But it didn’t take long to realize that whether or not he was exactly what was expected, he was every bit as precious as anyone had ever imagined he’d be. 

A Facebook friend, who also has a DS child, commented today that her son was born with “extra”, and I thought that was an apt explanation of Nathan, too.  An extra chromosome, sure, but so much more than that.  Mostly, I think it came down to an extra bit of love and goodness.  Nathan always had a smile or a hug, and he found true joy in simple things.  And whether he knew it or not, he shared that joy with others. 

I miss Nathan, and the joy he brought to those around him, but, mostly, I feel blessed to have had the chance to know him.  The chance to learn that those with DS are more similar to the rest of us than they are different, and that they have more abilities than disabilities.  It’s a lesson that can be applied to a lot of people and a lot of situations, if only we will learn.  World Down Syndrome Day is a good way to begin learning, to help us recognize the value those with “extra” can bring to our lives, but I can’t help but hope that there will come a time when no such day is necessary.  I think Nathan would’ve liked that.