here i am to worship, here i am to bow down
i smell her hair.
thin arms and legs with a head too large for any human body.
i inhale and wish for the scented air i remember from the doll of my youth. i would have taped that doll to my face like i once tried to tape mazzy’s pacifier to her head when i was a brand new mom, callous and selfish.
i am holding her close right now and my nose is at the top of her head. my real girl, my flesh and blood girl, her hair is red, too. but not the bright pink of strawberry dolls. it’s brown with lights high in it of red.
she is falling asleep and I am wondering what is wrong today.
i’ve become used to people staring. i don’t care most of the time and when i start to, i hum under my breath. i don’t know which song it was today, jingle bells or the superman theme. the mindless music gives me courage. it makes their wondering stares less real, more like a movie.
i don’t look them in the eye; i barely look at my husband as he carries her out of the building and off the premises. i steal one glance before they are gone. there she is, still fighting, still crying. she is hitting him and i have her glasses in my hand.
little wire frames.
people like to call people with down syndrome angels and that may very well be because people with down syndrome have said fuck it a long, long time ago.
maybe when they were five or maybe six, they tried for the ten millionth time to state their opinion and no one, not even dear sweet mom, could comprehend them.
so right then and there it was decided.
five years of trying to be understood is quite enough, thank you. and we admire them because we are unable to say that to this world. we think it divine to not give a flying fuck.
people with disabilities suffer long with us. and with a much better attitude.
i try to understand it, but who can translate the ocean? i don’t know how to turn salt water into fresh.
here we lay now after another tiny fiasco. she’s asleep already and breathing deep, breath catching at the back of her throat. she’s curled up next to me like she was curled up inside of me twelve years ago.
the girl that i’ll never completely reach. a simple page of a life. this complex heart behind the scar cut down the middle of her chest when she was four months new. my oldest child, a weak thing shaming the wise.
“do you think abe gets left behind with all of mazzy’s needs and eleanor’s needs?”
my son? the one shouting from the rooftops that he doesn’t get enough attention? whatever makes you say such a thing?
of course. yes. mmm hmm. yeppers. just like me and her dad and the cat and every single other person on the radar of our lives. yes sir. mazzy’s needs and the needs of a five year old really don’t bode well for feeling affirmed day in and day out. and guess what?
there’s not a thing to be done.
there’s a lot of life that is more than we wanted. we live on the fringe edges of life as we understand it and life as it is. it’s the truth tellers that let go of the threads of that magic carpet of a wanted life, they just let it go.
i can’t change disability. i don’t know what you can’t change. maybe you married what you can’t change. maybe what you can’t change just up and died when they were needed like air is needed. maybe what you can’t change is you.
jesus is the stone placed in zion.
and i should like to take a sledgehammer to his girth and his strength. i would spend my life and perhaps, i do. i try with all my will to reduce him from what he is.
i suppose i will continue this way until i die.
i will be in mid swing to pummel the one that will not diminish and my heart will stop and i will fall onto the piles of bodies around this cornerstone. and he will pry the hammer from my dead hands and lead me into life everlasting.
that’s what he does.
that’s what it means to follow jesus.
he is the greatest thing that we can’t change. all these smaller true things that we are powerless to alter, they point us here. back to the biggest truth we can’t change.
the things we can’t change are the most important parts of our living.
i lay my head back on the pillow and breathe the existence of her in deep. if you can’t beat them, join them.
maybe that’s the other part of following jesus. if you can’t beat him, join him.
repost from the archives