and i’ve seen your flag on the marble arch
and love is not a victory march
it’s a cold and it’s a broken hallelujah
mazzy wants to be in the choir.
she’s sat in the audience applauding her brother and her sister for a few years now.
she wants a turn. but the polite email from her teachers told us that while mazzy would be allowed to participate in class, the performances were very competitive and so, yeah…well.
last year’s school production didn’t go as well as the first one. she ended up in the audience for that show, too. but still, she practices and stands at the foot of the stage in her imagination, just like every other sixteen-year-old girl.
but she’s not just like every other sixteen-year-old girl.
these days having a child with down syndrome is a ticket to the blogosphere.
it’s good, too. positive images and t-shirts and videos of these lucky few families abound. and i admit it was great having a tiny person of unspeakable cuteness toddle around our home.
it was also incredibly hard to accept that they were not just like everyone else.
inclusion is great.
it can also be heartbreaking for the person who is alone in the room.
we were at the pool the other day.
eleanor and maz were sitting on a bench waiting for me to collect towels and flip-flops. when i made it over to them ella pulled me aside. “mom, almost every person who walked by us stared, like openly stared, at mazzy. like for a long time!”
yes, i told her, that happens. mazzy is very unique, i told her, and it satisfied for the moment.
i looked around and stared back, remembering that feeling ella was feeling. i’ve become immune.
one day i was interpreting in a classroom and one of the deaf students asked me, “why are people deaf?”
when i could breathe again, i told her the truth.
“i don’t know.”
mazzy wants things she can never have and one of those things is an answer.
a real one.
the older mazzy becomes the more she understands how down syndrome separates her from the world at large.
it’s just true.
what she accomplishes must be a collaborative effort because she needs help.
and she will always need help.
that’s part of who we are as her family and her community.
the people who help mazzy.
it can feel abbreviated to see families that present the shiny newness of down sydrome because that is not the whole story.
yes, mazzy is mazzy. her brother and sister would lay down on railroad tracks for her, as would josh and i, and maybe, as would you.
but there is also glaring unfairness in the lives of people with down syndrome and the families who love them. it blinds like when you’re driving and the visor just won’t block the sun, no matter how you try.
we carry it the same as we carry the nameless blessing of the privilege of having her in our lives and i can’t pretend it’s not there.
it’s our life. i wouldn’t trade it. i wouldn’t trade it for the world.
not for anything, not for normal, not for relief from pain, not for people who never stare, not for nothing.
i’ve learned through mazzy that there is a life that sits and watches. it sees how people really behave from their truest heart. this life can only exist when you’ve been rejected by the world and the rejected of the world know something we don’t.
rejection is another word for freedom.
once you’re free, you can do whatever you want.
it’s not simple to have down sydrome or to love someone who does.
it makes you see the world as it truly is.
and in the end, that’s nothing less than then god saying you’re welcome all the days of your life.