I came upon Moxie the other day as she was sitting by herself. The ‘Big, Little’ book was open on her lap, her legs outstretched. She was signing the pictures, signing “tree” then signing ‘flower”, turning the page (with a flourish and slam) and signing on.
I thought my heart was going to bust out of my chest with the explosion of pride that I felt in her. It’s similar to the feeling that I get as I set a blank sheet of paper in front of her along with some art supplies and watch her just tear in. Or the feeling that I get as she walks down the beach: she knows her own mind so well, she is clear about what she wants and the path she desires. Her “yes”’s and “no”s are firm.
I am so proud of her.
Far from challenging me to enjoy a slower pace in life as many people talk of with their children with Down syndrome, Moxie pushes me to run as fast as I can. She is quick.
In response to my post on how I appreciate her speed, I have been asked, “What if she were slow?” – That is to say, what if she didn’t move as swiftly as she does, what if her “yes”’s and “no”’s were not firm, if she didn’t know her mind as well as she does? What if she embodied all that I have not professed to value?
It has been asked if I would still appreciate and adore Moxie if she were none of these things.
Moxie has Down syndrome. She has an extra chromosome, she has an intellectual disability.
There are so many cards that are stacked against her, I don’t even know where to begin. The biggest one though, the most glaring one to me is this idea that we have as a culture that there is something wrong with her, that she’s broken or something.
“People with disabilities are broken”
There is this idea that she needs to be molded into some kind of mainstream form. That she needs to do as all do, that instead of looking to her to see what she offer and trying to move with her flow, we staunch her flow and divert her stream.
We will never truly learn what anyone with Down syndrome – or any disability, or plain ole’ human being when it comes to that – have to offer if we push people into molds. If we don’t let them be who they are, if we don’t encourage every aspect of who they are to flourish so that flowers that we never even knew existed would have the wherewithal to emerge, sprout and bloom.
And that’s part of the key here to me – ‘flowers that we never even knew existed‘ – because we know very little about Down syndrome in particular and intellectual disabilities in general. We have been so busy for so long in not listening.
I want to listen. And I want to encourage her to flourish in all the ways that I know, and I want us to provide a space in which all the ways that we are not aware of will have the positive soil in which to emerge.
If Moxie was not quick, if she was not so sure of herself, there would be something else.
Three years into raising this child and I’m sure at this point that that something else would shine so brightly that I’d forget about how much I admire whatever it is that I laud now. I’d be singing about that something else.
It’s not that I’m oh-such-a-holier-than-thou-pollyanna.
It’s simply that she is my daughter.
And I love her.
I’ll always see the bright in her.
Not that she makes it hard.