What to Do With the Pain of Wanting Somebody Else to Change

My eldest daughter started first grade this year. As the school year began and we stepped onto her new campus, I knew our journey would be much different than the majority of the kids on campus.

You see, my daughter has Down syndrome.

And with that extra chromosome comes a whole lot of awesome.

She’s basically one of the coolest people I know. But with that extra chromosome comes a whole lot of junk. The junk we deal with because of her extra chromosome has nothing to do with her, but rather everything to do with the way she is perceived by the people around her.

Photo Credit: Adreas-photography, Creative Commons

It’s as though she popped out of the womb waving her “awesome” flag and as she encounters the world, the people in it, the ones who have chosen not to get to know someone like my daughter, are splattering her “awesome” flag with their ideas and agendas and ignorance and trying to cover up her awesome.

As my daughter began school I wished people saw all the awesome.

I wished when the kids and the teachers and parents saw her march in, waving her awesome flag, they would have lined up to see who would get to sit next to her in class, or be her teacher, or invite her over to play.

But by the time she enters first grade, her flag is already tarnished by the paint those who don’t understand have splattered on it.

As the mother of a chid with Down syndrome I see, know and live the reality that something has got to change. And honestly, I have done almost all I can do on my end. I find myself up in the middle of the night wondering how I am going to make things change for my daughter when the change she needs is hinging on the people around her making a change.

I can’t tell you how miserable it is—waiting on other people to change.

And it’s almost impossible to make someone understand something they are choosing to ignore.

It’s impossible to ask someone to change their thinking when they are not even aware they are having such thoughts.

So while I dream of a time when the people around me make the changes needed for my daughter and all people with Down syndrome to be seen for the awesome people they are, I have to stop and ask myself: whose flag am I tarnishing with my ignorance and thoughtlessness?

Who’s very humanity is contingent on my ability to change?

Who am I standing in the way of?

Because I can sit here and point to the thousands of people standing in the way of my daughter, but if I do that then I have to stop and ask myself the same question.

Friends, who are we standing in the way of? Who is desperate to be seen as awesome but the only way that can happen is if you and I make a change?

When I ask others to join me as I fight for the changes needed for my daughter to wave her “awesome” flag free of splatters and blemishes, I am asking them to get uncomfortable, I am asking them to think differently, I am asking them to make a change.

While I stand up and at times beg for others to be the change my daughter needs, it is my hope that I too can look around me and see what kind of changes I need to make. In what ways do I need to become uncomfortable, think differently, and change so that others can wave their “awesome” flag high?