Monday, March 21, 2011

World Down Syndrome Day and the legacy of Jerome Lejeune

Today has been designated World Down Syndrome Day. Pictured above is the man who discovered the cause of Down syndrome. More about him in a minute. Because he rocks.

And I figure anything that rasies awareness about the individuals born with Down syndrome--and their accomplishments, struggles, and lives--is a good thing.

I have always passionately believed that there is a dignity to life, one that cannot be minimized or trivialized, regardless of one's standing in society and regardless of the way in which they are born. I participated in my first pro-life walk (to raise money for a crisis pregnancy center) when I was but 9 years old. I remember, at age 11, spending a day at a ranch hanging out with middle school students who were developmentally delayed. Then I volunteered with Special Olympics in junior high school. While I was far from being a saint (do you cringe when you think about the stupid things you used to do/think/say, or is that just me?), these things were on my radar screen and embedded in the very depths of my heart from a young age. Instilled in my by my parents--so, so grateful to them for that. (And who says kids don't listen to their moms and dads?)

As you all know, I am about to adopt two little girls who were both born with Down syndrome. NOT because I have any desire to be an activist. (We can all agree that is a horrible motive for adopting a child. So that is definitely not what I'm trying to say here.) But because we are open to life. Feel called to adopt. And there were two little girls who needed a home. We didn't think Down syndrome should matter in that sense. It is something our family will embrace and address.

My beliefs about dignity and life feel so much more personal now.

All of a sudden, it's not simply me being frustrated-from-afar by the way people treat those who are different from them--it's my future daughters we're talking about. Who are children that happen to have Down syndrome.

All of a sudden I'm thinking, really thinking, about the type of world these little girls have been born into. They are leaving their birth country which, sadly, cannot offer much in the way of resources for developmental delays. And coming to a country rich in resources for kids who need a little extra practice with walking and talking. Yet still I grieve because our society is, whether we want to admit it or not, incredibly hostile towards individuals with Down syndrome (and various other medical needs, for that matter). We assume they must not have a good quality of life. We assume they won't achieve what our non-developmentally-delayed children will achieve--and believe all of that actually really matters. And we currently eliminate 92% of the precious, lovingly-created souls with Down syndrome from our country. Before they can even be born.

It is my view that we simply struggle to see people as being created by God, period. This of course isn't limited to babies with Down syndrome. It extends to people sitting on death row. And people struggling through addictions. And, for goodness' sake, people who speak a different language from us. Why, oh why is it so very difficult? Why do we struggle to acknowledge that ALL life is valuable, every single one, every sweet, individual soul? Why do we jump at the chance to draw lines between "them" and "us" as if somehow WE are more capable of eeking out a meaningful existence (and attempt to rob them of the same in the process)?

So today, for World Down Syndrome Day, I wanted to introduce you to an incredible man. This article is an interview with the daughter of Jerome Lejeune (the French geneticist who first discovered the cause of Down syndrome. Pictured at the top of this post with one of his patients.) Have you heard of him? Quite possibly not. Because this man was not only a brilliant, famed geneticist, he ended up spending the majority of his career fighting for the lives of those born with Trisomy 21. He faced opposition, discrimination, and all-out hatred, but still he continued on: a true hero of the faith. I am so anxious to read more about this amazing man and about his work, as I know I can learn so much from his Godly, selfless example.

What a legacy Jerome has left. Just Google his name, and you can find dozens of articles about him, and books he has written, all in the name of life. (I feel a little proud too that my husband's middle name is Jerome, as well as one of my sons' middle names. Not a bad guy to share your name with!)

This man exemplifies so much of what World Down Syndrome Day ought to mean. May we all have the courage and conviction of Jerome Lejeune!


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