What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Thursday, March 21, 2013

World Down Syndrome Day

Today, March 21st is World Down Syndrome Day.  

Why 3/21?  

Down Syndrome is officially known as Trisomy 21 - individuals with DS have three copies of the twenty-first chromosome.

I don't have any new insight into Down syndrome - and I am planning to spend the day advocating in my local community, so let me suggest that you check out some other blogs:

This post at Just a Little Muchier Muchness is right on target:

socks, really?
I participate in World Down Syndrome Day and the 31 for 21 blogging initiative for Down Syndrome Awareness, not for you to know about my kid, to be aware she exists...hey, you can look at her and realize she's not like all the other kids...it's so you can understand more about my fears for her, my child's triumphs and struggles, and maybe become more encouraging and supportive...maybe make a difference and a more inclusive future for her later... 

And you can hear from four different moms at Not Alone:

Mothers Share Truths Learned Because of Down Syndrome

The truth is, most of us did not choose to become special needs parents. For many of us, dealing with the diagnosis was hard, we had to let go of hopes and dreams. Yet, as time goes by and we find ourselves parenting and loving our children with Down syndrome, we change. We begin to use words to describe them, like “gift,” or “blessing.”
If you want to spend some time reading about other families who have kids with Down syndrome, there is a wonderful list at Down Syndrome Blogs.  If you scroll down, you'll see a ticker with everyone's recent posts on the right.  There are some amazing kids out there!
I also should share the following video, but before I do, I want to make a comment on the song.  The first time I saw this video, I was disappointed.  Not because of the pictures or the message - they are beautiful! - but because of the music.  It seemed negative and so defiant to me.  There's a recurrring refrain that "You don't like the way I walk, you don't like the way I talk" in the middle of the singer announcing that she will be herself - anyway.  "It's who I am!"

I listen and it makes me uncomfortable - maybe because it's presented with these wonderful images of kids and adults who are loving their lives.  I am a diva ... compassionate ... sassy ... confident ... a dancer ... a ladies man ... And I think to myself, who doesn't like the people on this video?  Who would stare or glare at them? (Another lyric).

And then I think ... well, maybe that's the point.  So far, nobody has stared at Ben.  Or glaredTo meet Ben is to love him.  

But that may not be true for his whole life.  As he gets older, he may be teased or laughed at or just plain not-liked because he has Down syndrome.  And maybe the point of that particular song with these images is to make people stop and think.  Do I stare?  Do I glare?  Do I judge people who are different than I am?

Can I just be me and let Ben be Ben?  And not treat Ben any differently - or see him as someone who is less than - because we're all just trying to be ourselves.  Whoever we are.  Whoever God made us to be.

Check out the video:

Thanks for loving my boy.

And have a happy World Down Syndrome Day! 

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