here i am to worship, here i am to bow down

princess

i smell her hair.

strawberry shortcake.

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.

queen

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.

my daughter.

devan's street

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.

again.

so right then and there it was decided.

fuck.  it.

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.

mazzy

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.

lovely life

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.

three

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

This entry was posted in disability, jesus, mazzy, mothering. Bookmark the permalink.

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18 Responses to here i am to worship, here i am to bow down

  1. B says:

    whoa.

    just whoa.

    (and love)

    xo

  2. zena says:

    whoa yourself.

    love you!

  3. Paula says:

    YOU have a gift of literary insight. I felt everything you described, not because I have a special needs child but because I am a mom and I believe in God. Very profound and real and thank you. Your daughter seems like a lot of work and frustration( and love of course) but she has given you a gift …thanks for sharing her.

  4. zena says:

    thank you, paula…

    she is a lot of all of those things and much more, too.

    i appreciate your comment.

    ~ zena

  5. Jessica says:

    This is written beautifully Zena. And although I don’t have a mental disability, I do have a physical disability which has made me feel isolated from the rest of the world way too often and I have too come to the point of fuck it. It can’t be changed and I can’t explain it anymore than I have. When I finally got to that place grace felt real again. I could see Jesus without being pissed off at him. It’s hard to get there. Really hard.

  6. zena says:

    Grace felt real again…

    that’s the point. thank you Jessica.

    – Zena

  7. chelsea says:

    My favorite so far.

    A group of people were discussing your writing at the park yesterday in Columbus. We were discussing its boldness, its efficiency, its offensiveness (in the best way!), and its beauty. Thank you for your precious pearls. We see their costliness and treasure them!

  8. tonia says:

    Oh Zena. This is so pointedly *right.* I appreciate so much this honesty, this glimpse of the feeling of what it is to be locked inside with something that you can never change but that is wearing parts of you (and the other people you love) away. (And then people come along and say, “He/She’s so lucky to have you!”)

    So many times I’ve caught myself teetering on the edge of another vista trying to find the path down into the life I am sure I should have had – it is so clean and neat and beautiful and creative and expansive there! – only to realize that there is no path down there, that is not my place, my country.

    Sometimes, I have wept for the loss of that beautiful land. And other times I have thanked God for the grace of being entangled, entrapped, entwined with people who have no pretence, no false faces (and some who are so defined by addiction and falsehood that they, too, anchor me to a cold reality.)

    You are right about Jesus…the offense of Him, the immovability, the frustration and the comfort. Thank you, friend, for saying it aloud.

  9. zena says:

    tonia,

    anchored in reality.

    i like that.

    sometimes it’s cold and sometimes it’s salvation. he sees to it that we don’t stray to far.

    prone to wander, lord i feel it…
    zena

  10. Me says:

    “Maybe you married what you can’t change” devastating. Brought me to tears. Weeping.

  11. zena says:

    i pray that what you can’t change brings you to the unchanging one. and i hope that you are okay and better today.

    ~ zena

  12. Bonnie Fox says:

    I like this post, but why would you feel the need to say that word? I love your blog and actually feel like I can’t read it anymore because of the language 🙁

  13. I love this:
    “the things we can’t change are the most important parts of our living.”
    Thank you for your honest and beautiful writing.

  14. Janel says:

    sometimes there just aren’t other words that express what needs to be said. Thank you for being YOU for expressing frustration in the most poignant way possible. thank you for sharing a common fight we all feel in trying to reduce God to something we understand, something that might make sense of the world we live in, the life we’ve been given. Thank you.

  15. zena says:

    you’re really kind janel.

    and a good reader, too! i spent time visiting your site. so lovely…

    nice to meet you.

    ~ zena

  16. Jen says:

    This post is why writers need to write. Your words are so well written and saturated in truth! I don’t know you but I love you for being a truth teller. I’m amazed by the number of Christians who believe they are in control of their worlds. Their good fortune in this world is a result of right living, right decisions, right faith. How far would I wander from the God I love without this thing I cannot change? What if the Christian culture in America validated trials instead of the good life? What if we actually saw the value in the thing we cannot change which tether us to our Lord? Keep writing and God bless you.

  17. zena says:

    hey jen,

    thank you.

    and not just america…me, too. what if i validated trials instead of the good life…i’m still trying to get that one down deep.

    ~ zena

  18. Grace Scott says:

    Weeping at this one. Thank you for putting your thoughts out into the world. Helping my heart grasp words for the unnamed spaces.

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