I Did Not Support The Cause

Today is World Down Syndrome Awareness Day. It happens every March 21st. I used to pretend that I cared immensely about this, but I had to be honest with myself, and I stopped making it into something that I just don't get.

And this is where everyone in the world of DS that reads here looks at me in horror. And hovers over the little icon (wherever it may be) to remove me from their reading list.

But let me explain before you pass judgement. I'm not sure what "raising awareness" means. Call me dense, but most of the world knows what Down syndrome is, so we can't be making people aware of that, right? What are we making people aware of, then? That people with DS are just normal people? Except not? (Who is normal, though?)

In order to raise awareness, the movement of the day was to wear funky socks to draw attention to yourself. So that you could raise awareness. I get that interesting socks could be eye catching, and in the event that someone would ask about them rather than just look askance at you and think, "somebody needs to teach YOU how to dress," I'm not sure where I'd go from there. "I'm wearing these socks to raise awareness for Down syndrome," is an awesome thing to say. But I'm socially inept, and very slow with things like this. What would be the next line of that conversation?

Here's the thing. Everyone that knows me knows that I have a son with DS. Everyone that knows me is already more aware of DS than they were 10 years ago before Micah entered all of our lives. And that's exactly what he did. He's not just my son; Micah belongs to everyone who's ever met him. It's just his super awesome personality. And the best part is that everyone else with DS has that same super awesome personality, too. If you know someone with Downs, you'll never forget them. Ever.

I came to the conclusion years ago that there is absolutely nothing I can do to educate people about Downs. I can tell others that my son, and those like him, are some of the happiest people you'll ever meet. I can say that they're simply non-judgmental and accept everyone for who they are, and it's a wonderful thing. I can say that they're not petty, or catty, or vindictive. And for everything I could say, there are a dozen more things that I could never put a voice to. But everything I could say, or couldn't find a way to say, means nothing if you've never met someone with Downs. It's simply words, because you cannot comprehend something that can only be experienced.

I experience Down syndrome every single day. Some days I realize that we are the most blessed people on the face of the planet for being chosen to parent someone so amazing. And some days I wonder how I'm going to get through the day because that boy is trying my patience and it's all I can do to hold it together. Parenting Micah is just exactly like parenting any other kid. Except not. And that, too, is something that you just have to experience because it can't be explained.

Today is World Down Syndrome Awareness Day. Today I did nothing to raise awareness, because there is nothing that I can say or do to help anyone understand what life with Micah is like. I can, however, introduce you to Micah, and he'll help you understand exactly what I cannot say. Ironically, the boy can't talk. Sometimes words just aren't needed. You just need a heart that isn't afraid to love those who are different than you are.


Martha McKinley Murphy said...

I love how you said this and I love that you "did nothing"....although you really did because like any parent you expressed the love and hopes and fears you have for your child...wonderful Micah

Cindy said...

Great post! Love the check up from 'Dr. Micah'. :)

Mary said...

Well said. I didn't nothing as well and only felt a smidge of guilt as I heard all our friends planing to taking blue and yellow cupcakes to school to celebrate. I struggle with it because anyone in Riley's world knows that he is amazing. They already understand that a little different isn't bad or scary. In his kindergarten class drawing more attention to it singles him out to be treated different when really we've been trying to avoid that all year.

As always I love your blog!

wendy said...

What a wonderful post!!

Tara said...

"Except not." Love that! Exactly. :) Since I work outside the home, I love WDSD because it gives me an opportunity to showcase my boys! To show those that have met, but don't know, them that we celebrate them. To explain that they are not weird, or scary...just boys with a little extra. It also allowed my co-workers to celebrate with me by wearing their funky socks and having lunch at Ruby Tuesdays with me. They felt good showing their support. (So, no...not deleting you! :)

Karen said...

Tara - I love that you loudly and proudly support your kids at work. If I worked outside the home, I'd probably make this one of the biggest days of the year. I'd also consider passing out blue and yellow ribbons for co-workers and restaurant wait-staff, and strangers on the street...

Maybe in future I can do that for my friends.