The topic: A Cure for Down Syndrome.
A Cure for Down Syndrome?!
Just the phrase makes me do a double take.
As soon as I hear it so many thoughts and emotions are stirred up in me.
And while I’m a person who is not at all easily offended; I’m finding myself offended.
It’s almost like saying, a world with out Macyn.
Could you imagine?!
A world void of people who see ONLY the best in others.
A world void of people who don’t make decision based on the opinions of others.
A world void of people who love with complete abandon.
A world void of people who don’t want to be anything more than what they are and even more don’t want you to be anything more than what you already are.
A world void of people who when they hear the music, they dance.
A world void of people who tear open our hearts and teach us how to love better.
Yeah, a pretty sucky world.
One of the people who brought the article to my attention was so excited to show me, like all my problems have been solved. And while this person is well intended, he does not have anyone in his life who has Down syndrome.
And I know how difficult it is to understand why someone would want a child with Down syndrome, when your are sitting on the bleachers. Trust me, I’ve sat there. People have praised me for adopting a child with Down syndrome but I’m no different than you. My heart longed for a “healthy” and “whole” child. I was perfectly fine loving people with Down syndrome from afar. But by God’s grace and His grace alone I was thrown onto the field, to play in a game that scared the crap out of me. And now I find myself looking up into the bleachers at the bystanders and I just wish they knew what they were missing. But like most things in life, you can never know something fully until you are living it, experiencing it, licking the bowl clean of it.
It’s impossible to know how rich and true and full your life will be if you have a person with Down syndrome in it, unless you have a person with Down syndrome in it.
And of course it’s not all gumdrops and lemonade. There are reasons that those people in the bleachers don’t want to get involved, reasons people are looking for a cure. Things such as cognitive delays, congenital heart defects, low muscle tone, increased risk of leukemia and shortened lifespans, just to name a few, are not to be taken lightly. It’s serious business people.
But then I wonder, when did we decided that a good life is one void of difficulty, and struggle? I can only speak for myself here, but when I look back on my short 31 years of life, the times I was functioning as the best version of me was because of difficulty and the lessons it taught me and the person it helped me become. Don’t get me wrong, in the midst of the struggle and difficulty I was a miserable human being. But looking back, I’d do it all again, because of the person it helped me to be. And how many times in your life were you terrified at how difficult a situation may be and it turned out to be one of the best things to ever happen to you?
As an external processor I could write about this topic for hours, but I’ll leave you with just one more thought (okay maybe two). A few weeks ago one of Macyn’s followers on her Instagram said something that really struck a cord with me. She said that maybe our kiddos with Down syndrome aren’t the ones who should be striving to be more like us, maybe we should adjust our understanding of what “normal” is and just let these people be exactly who God intended the be…out of control awesome!
As a final thought I want to share a quote I read from a mom of a child with Down syndrome. At the time she was pretty bummed to be having a child with DS but now that she has one she says: “I wish they had told me I hit the jackpot. It’s a slightly different journey than we expected, but it’s a far more beautiful one.”