Merry Christmas

Can’t believe it’s been almost three week s since our last blog post!   Between Jonathan’s birthday, the school Christmas play, the church Christmas pageant, the Nutcracker (which unfortunately was not to be for Charlotte since she sprained her ankle during one of her final rehearsals :-(), and Phil’s and my annual Bad Christmas Sweater Party :-), seems there’s been precious little downtime.

Jonathan's Birthday party

Charlotte in the school Christmas play

Charlotte as Lucy in the church pagent "Charlie Brown Christmas"

Charlotte in Nutcracker Party-Boy outfit…and bum ankle

Bad sweaters = good times

So here we are, Christmas morning, and – “IT’S A CHRISTMAS MIRACLE!” I actually feel somewhat calm and organized and able to sit down and reflect on an amazing year.

From the bottom of our hearts in the May household, we cannot thank you all of you enough for supporting Deedah this year!  Because of your support, Deedah has been shown throughout the country in school classrooms, PTA meetings, in front of medical students, has been screened at the National Down Syndrome Congress, film festivals and at numerous Down Syndrome Support Group meetings and at Buddy Walks. It has made its way into new parent packets.  It has also won an “Indy” – an award for excellence in independent film making!  We are so excited that it is gaining traction, not only in the Down syndrome community, but in society at large.  We are so grateful for every opportunity to expose the film – not only to those who have a connection with a person with Down syndrome, but also to those who don’t.   We are also grateful for all the creativity, energy and passion many of you have put into getting Deedah “out there.”  And we are humbled by the numerous kind words we have received throughout the year – can’t tell you how often I have read your comments and emails and have sat down at my laptop and cried, (happy tears :-)!)  –  so touched that you have been touched by our little family film project.

As I wrap up this amazing year, I am struck by an image that could not be more pertinent during the Christmas season.  It is a 16th century Flemish painting depicting the birth of Jesus.  Among the figures in the painting are an angel and a shepherd who appear to have Down syndrome.  The first time I saw the painting online I was blown away.  (And in September, I tried, but was unfortunately unsuccessful, in seeing the painting in person when I went to the Metropolitan Museum of Art in New York City – seeing that painting in person is still on my Bucket List :-).)

To me, the painting speaks of an era where people with Down syndrome were possibly fully accepted and included. Sure angels and shepherds were on hand for Christ’s birth – but check it out – there were even shepherds and angels with DOWN SYNDROME on hand for His birth! The shepherd is right next to Mary.  Could it be that in 1515, being a shepherd with Down syndrome was no big deal?  Or could it be that people (and angels) with Down syndrome were not only accepted, but revered back then – to the point where you couldn’t accurately depict the manger scene without including them?   Or does the painting just accurately depict societal numbers back then – that in every gathering of a certain number of people, at least one or two of them would have Down syndrome?  Could it be that in 1515, they had it more together in terms of inclusion that we do now in 2010?

So as we celebrate Christmas 2010, I have a wish – a wish that all of those with “something extra” will receive something extra under the tree – the gift of friendship, understanding, acceptance and peace.  And for those of you who do not have that extra chromosome, I wish that for you as well.

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4 Responses to Merry Christmas

  1. Bobby Thanepohn says:

    References to the painting and DS:

    Andrew S. Levitas and Cheryl S. Reid. “An Angel with Down Syndrome in a Sixteenth Century Flemish Nativity Painting.” American Journal of Medical Genetics 116 (2003), pp. 399–405, figs. 1–3 (overall and details), propose that two of the figures depicted (the angel next to Mary and an earthly admirer in the center behind the angels) show facial abnormalities associated with Down syndrome …; suggests that the painting could be one of the earliest European representations of the syndrome.

    Tim Cornwell. “Challenging the Attitutdes to Down’s Syndrome through Art.” Scotsman.com. March 19, 2009 [http://living.scotsman.com/tim-cornwell/Challenging-the-attitudes-to-Down39s.5086722.jp].

  2. Karen Strite says:

    Many years ago children like ours who had Down syndrome used to be referred to as “blessed” because then, the word “blessed” meant “innocent in the eyes of God”. Therefore, if you had a “blessed” child, it meant that God had shone his favor on you.

    So, from one Favored of God to another, Merry Christmas! We’re so glad we were introduced to you and DEEDAH in 2010! And btw, DEEDAH makes a wonderful Christmas gift for therapists and teachers!

  3. Judy says:

    Love’d Charlotte in the green outfit – sorry about the injury though – and she sure looks like she’s having fun as Lucy.

    Can’t wait to see what ya’ll do for New Years!

    Happy New Year!

    Judy

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