Yesterday I attempted to replace the heater vent cover in Addison's room. I am typing this with bandaged fingers, so as you can imagine, the heat vent won.
As I sat on the floor, frustrated by my lack of success, I couldn't help but stare at the wall in Addison's bedroom.
I saw wild colors and a variety of lines leading nowhere. I saw her imagination at work. I saw something that traditionally was meant just as a blank, space-holding device, transformed into a physical manifestation of her uniqueness.
But yesterday as I sat on the dark, wood floor of her room and stared at the light gray walls that are hers, tears brimmed in my eyes. I've seen her drawings here a million times, but never had I stopped to really SEE them.
This was far more than scribbles on a wall. This was an exploration of emerging fine motor skills. This was celebrating freedom of movement. This was Addison, being Addison. No rules to follow, no specific drawing instructions. Just heart and soul flowing directly through her crayon of choice.
I got up from the floor, found the biggest frame in my storage closet, and placed it over her artwork.
It reminded me of my relationship with Addison...with Down syndrome.
The longer I parent a child with Down syndrome, the more I realize how little this is about me and my feelings about Down syndrome. This isn't about my hopes or dreams or fears for her future.
I am just the frame. And an imperfect one at that.
Like any art display, the focus is not the frame but rather the art held within. Or, perhaps, within and around. Because who is the frame to define what the big picture should be? And in this case, the colorful, creative picture is Addison being perfectly...Addison.
I figured I would train her to rock that chromosome. To learn and achieve so impressively that she prove what an incredible human being she was by wowing the world. I would set her up on a pedestal of achievement and set an example and advocate the HECK out of Down syndrome.
I would take her extra chromosome and shove and shove until it fit PERFECTLY inside my frame.
A bit into my "rocking the extra chromosome plan", something dawned on me. (Actually to be more accurate...a large, rocky boulder of realization knocked some sense into me.) Addison does not become more of a person by being pushed and trained toward normalcy. Her worth does not increase the more she accomplishes. She doesn't need to prove anything. She doesn't need instructions to "rock it". And furthermore, my interpretation of Down syndrome means nothing.
I learned that she rocks that extra chromosome and proves what an incredible human being she is...simply by being Addison. No achievement required.
I stepped back from "my plan" and let the person who owned the picture take over. I stepped down from the podium and sat down to take notes.
Why had I been trying to make Addison into something different than who she was? Into my vision of what Down syndrome should be? Why was I attempting to change her and PROVE her to the world? She doesn't need to prove anything.
Addison is this wall art. Beautiful, thought-provoking, outside the lines, colorful, beautiful, not easily explained, entirely unique, captivatingly interesting. It's not my job to try to draw lines between hers to make the picture "make more sense". Or paint over part of it so it fits into the frame.
No. I am the frame that sits passively, watching the master artist at work, allowing her to shape what the picture should be.
Don't get me wrong. She achieves, we push her to do so, and I think she's amazing! She's reading, counting, jumping high, running fast, and is fiercely independent (and can we talk about her chocolate thug climbing skills???) I ADORE watching her emerge into her best self.
But none of this achievement is about proving anything about Down syndrome.
I love LOVE when I see adults with Down syndrome making the news for their achievements. Seriously these news bits bring me such joy.
But I also love LOVE when I see adults with Down syndrome in the grocery stores...just living and enjoying life.
To me these two things are the same. It's not about the headline, it's about the person.
Addison has taught me that this is false. Oh so false.
We all have these small idiosyncrasies that make up our personality. Tiny oddities unique to us. We are allowed to be "us" without apology as we navigate life, achievement or not. Isn't someone with Down syndrome afforded this same courtesy? Yes and YES.
Furthermore, how much of this personality thing is tied into Down syndrome and how much isn't? How much of her exists within the extra chromosome and does any part remain untouched?
Here's my highly scientific response to that one: I don't care.
It's okay. You're allowed to be you. We will more than tolerate it. We will cherish the youest parts of you.
And so yesterday as I sat on her floor (for hours....seriously that heater vent is a beast), I took time to just appreciate Addison for being....Addison. No additives...no subtractions...just her...perfectly whole and exactly as God designed her to be.
Down syndrome acceptance goes far beyond the words, "I accept Down syndrome". It's digging deep and throwing away all prejudice. Maybe this is one of the reasons why God created Down syndrome. Because what a lovely way to learn an important life lesson. These words explore what it means to love another human being for exactly who they are.
Chocolate stealing and all. (-;