3-21

Tuesday was the first day of spring and World Down Syndrome Day, and it came and went without too much notice on our part. And I kind of like that.  I like that we just went about our day, a typical family doing typical things--we raked the yard, and cared for a sick little girl, and played, and worked, and ate together.  Wednesday we celebrated the first day of spring with a trip to Plum Island (stay tuned for pics in a future post). It was incredible and exhausting--we're in a stage of family life where day-to-day survival is a challenge no matter whose on deck for the day.  One parent, two parents, extra friends and family, healthy kids, sick kids, happy kids, cranky kids, rested kids, tired kids--it just doesn't matter.  Even the best circumstances do not overshadow the fact that we are outnumbered by very busy, insatiably curious, often irrational little creatures. In the busyness of the mundane, the day slipped by.  

However, I do feel compelled to recognize the wave of healing that continues to sweep me up in its wild and crazy grip. Last Saturday we attended the MDSC conference, where I spent the first half of the day holding back tears. We were overwhelmed with information and surrounded by impressive experts and equally impressive young people of all ages and abilities. We rubbed shoulders with parents who love nothing more than to share their journeys with their unique son or daughter. And it all felt so normal. It was hard and good to stare Down syndrome in the face and to feel OK about it and to laugh about it and to cry about it.

I've loved Kaleb from Day 1, but I haven't loved that extra chromosome that laid a particular path across his life and ours.  I haven't accepted it quickly or easily. Part of me never will. But I am learning to embrace what 3-21 means, looking it in the face and not backing down.  The wave isn't pummeling me against the rocky bottom anymore, it's buoying me up to engage in new challenges and to build new community and to reshape the communities I'm already part of. 

It's not always easy for me to be in the business of building and reshaping, because I'm not particularly bold by nature. Unless something hits a nerve. And I have a new nerve. Tonight I read an online article called "Weakness that Makes us Strong" by Prof. Randall Smith. It's about Down syndrome and the newest prenatal tests that identify its presence at ten weeks gestation.  Someone sent me the link to it and it was very good, until I read this:

What makes such children so threatening that some people feel they must be eradicated completely? Indeed, why do they make many of us feel so uncomfortable? If I may indulge a Freudian impulse for a moment, I think it is because we see ourselves in them. That is, we see ourselves in all the most embarrassing moments in our lives: when we dropped our tray of food at school and everyone in the cafeteria laughed and applauded; when we didn’t know the answer to the question we were sure everyone else knew; when we acted in our usual fashion, and it turned out to be radically “uncool” and all the cool, sophisticated kids rolled their eyes at us in contempt. 

 

Those children are us when we were at our weakest, our most vulnerable, our most embarrassed. And no one wants to look or feel that way.

  

That, however, is precisely why they are some of God’s greatest gifts to humanity. Remember Paul: “When I am weak, then I am strong.” So too with us. When we can look upon that weak, vulnerable, socially awkward part of ourselves and say, “Yes, this too, God loves; this too, God sanctifies,” then we will finally be on the road to health and human flourishing.

The author was describing why people with intellectual and physical disabilities make us feel uncomfortable. I get his point. He writes this in the context of critiquing these reactions, in making a case for the value of children with Down syndrome.  His argument points to the way they teach us. But to that point I say this: My son is not a token, a symbol, a lesson on the landscape of humanity. The value of his life is not contained in what he will teach us. "He's just using kids with Down syndrome," was Mark's reaction. "We don't talk about our typical children this way, about what their lives represent." Mark is exactly right.  K is not a representation of a weaker part of ourselves sent to teach us that we are all worthy of love; he is not a life lesson. He is a baby boy who happens to have Down syndrome. And when I look at him I don't see a child who is weak or vulnerable or embarrassed by "defects."  I see a boy who is determined and smart and funny and affectionate and just as emotionally complex as his typically developing sisters, and far more emotionally perceptive than the average one year old. 

We do individuals with disabilities a disservice when we categorize them in the way this author does.  And we do the families who love them a disservice as well.  I appreciated many things about the article, and I agree to a certain extent: we have learned a lot from K and he will continue to teach us new ways of seeing the world.  Still, the author's approach perpetuates a perception of disability that is well meaning but wrong. His use of language such as "the mentally retarded," and "these children" reveals a misguided view of how disability should and does touch individual lives.  Dear author, if you want to draw conclusions about the value of all individuals with Down syndrome, you have a lot of work to do--you'll have to get to know each and every one of them personally.  I think you'd find their lives and personalities as varied and complex and hard and beautiful as every other human's. I think you'd find they have far more to teach us than to embrace and protect weakness and vulnerability. 

If you're interested, here's a beautiful montage of the varied ways families like ours experience this journey--watch this video and be amazed.

Happy Belated 3-21.