Wednesday, 21 March 2012


Today - 3.21.12 - is World Down Syndrome Day.  Why today?  Because it is a celebration of the third copy of the 21st chromosome that creates the genetic abnormality known as Trisomy 21, or Down syndrome.  It is the seventh annual observation of WDSD.  And let's be honest - the first time I've paid attention.  Obviously now we have a reason to celebrate and observe WDSD.  Her name?  I can't tell you her name now, but soon you will know her as Katherine Ruth.  Very soon.  And girlfriend rocks that extra chromosome.

Whatever you think Down syndrome is, it's not.  

This 28 pounds of sass with a hair bow the size of a dinner plate showed us in about five minutes that anything we thought Down syndrome might be, it isn't.

Down syndrome is not a disability.  It's a different ability.
Do you see a disability when you look at that face?

Someone with Down syndrome is not a retard.  (A word I am absolutely ashamed to admit I used to use in a joking manner.)  When you look at that face, do you think she looks retarded?

Down syndrome does not make someone "socially unadaptable".  Does that face look like the face of someone who cannot adapt in society?

Down syndrome is not ugly.
Does that face look ugly?

Down syndrome is not someone who is a burden.
Does she look burdensome to you?

Down syndrome is not stupid.  
Does she look stupid to you?

The next time you think of Down syndrome, please think of Katie Ruth.  Today, and every day, we will celebrate her and all of her chromosomes.  Yes, Katie Ruth has Down syndrome.  But it will not define her.  I will make damn sure of that.  

She also has a heart, that will be so full of love that we will hopefully be able to make up for almost five years without a family.  Five years - longer than Jack has been a part of our family - she has gone without a mama to tuck her in at night, or to brush her teeth, or to kiss her when she falls down, or to make her favorite breakfast just because, or to have a birthday party, or to hug her before she goes to school.  All of those things were taken from her because of one extra chromosome.   

She also has sass.  Enough sass and spunk that she will fit right in with three brothers who cannot wait to get their hands on her.  Brothers who, when I showed them pictures and asked if anything looked different about Katie, said I have black hair and she has yellow.  Not that she has wide set, almond shaped eyes. Not that she has a tiny nose.  Not that she has little ears.  Not that she has any physical characteristics of Down syndrome.  That she has yellow hair and I have black, and that's different.  And, as Henry pointed out, we are all different, and that makes us special.

Katie is smart.  Is she "cognitively delayed"?  Yes, she is.  And that's totally OK.  And she also figured out how to operate my iPad in less than 60 seconds.  Cognitively delayed?  She doesn't need to be a brain surgeon or an engineer.  She needs to be the best Katherine Ruth she can be and to work hard at everything she does.  She doesn't need to be the best, she only needs to try her best.  

Today, on the 7th annual World Down Syndrome Day, I celebrate my sweet girl who is 6,000 miles away, rocking her extra chromosome.  Soon she will be here with us, and we will celebrate her every day.

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