Thursday, March 21, 2013

8th World Down Syndrome Day

Sophie's 1st prof photo black watermarked

This is Sophie’s first professional photo with her daddy holding her.  It was inspired by the cover photo of a book that was very important to me after our prenatal diagnosis of DS called, Gifts, Mother's Reflect on How Children with Down Syndrome Enrich Their Lives.

Why March 21st?  Down syndrome, also known as Trisomy 21, means that instead of having a pair, people with Down syndrome have 3 copies of the 21st chromosome.  That’s what makes 3/21 our special day.

karyotype 2cropped and resized

This is a karyotype, or picture of Sophie’s chromosomes.  You can clearly see the trisomy of #21.

In honor of our daughter and all our bazillions of lovies with DS around the world, please enjoy this video created to celebrate this special day by the International Down syndrome Coalition.

While today is a day to celebrate our loved ones with Down syndrome, it is critical to point out that we have SO MUCH work to do in this world of ours.  Our loved ones with disabilities are far more likely to be abused in all forms and repeatedly throughout their lifetime.  Our culture still supports exclusion in our language making the Spread the Word to End the Word Campaign so important.  Our children are still being denied access to inclusive education with critical supports and services far too often.  More and more I am hearing of families still facing exclusion from the faith communities that should be at the forefront of acceptance.  Mothers receiving a prenatal diagnosis of DS are still given limited, outdated, and gloomy information and are often encouraged to terminate their pregnancy.  This has lead to a 90%+ abortion rate once mothers receive a prenatal diagnosis of DS.  Outside of the disability community, we face brick walls and locked doors in every direction.

Don't Mess With Perfection Don't Mess With Perfection 2

It is a daily fight and it is exhausting and it is worth it.  I have to agree with Maureen Wallace in her article Down syndrome: Is awareness overdone and action overdue? when she, in righteous indignation, practically screams her demand for action.  As a community we have shown the power we have when we unite.  Although regular life is exhausting enough before adding advocacy into the mix, we need more people to pick up this mantle.  Whether people are natural leaders or not, our children teach us that we MUST be their voice.  We must take a stand and fight for their safety and dignity.  We must.  We must know our history and honor the warriors who came before us who fought for the rights our loved ones have today.  Please visit Visionary Voices, a project collecting information and stories of these warriors so that we cannot forget.


In that light and in honor of those who go to battle every day, enjoy the video below.  Oh, and happy World Down Syndrome Day!

For more who feel the same about the need for action, visit


Becca said...

Too true. I think awareness is important as a first step to action, though. We have to be able to capture the ears of the people we need to be able to enact change, and awareness within the global community, those very people who will be present to back us up, has to be present to sway the minds of the decision-makers.

Great post, Jen. Hugs to your beautiful, chromosomally-enhanced little girl! said...

So nice blogger