what god thinks of down syndrome

this weekend held world down syndrome day within it.  3/21.  if ever there was a reason to dust off the ol’ blog, this is it.  a conversation with my dear friend, jamica, reminded me of what being mazzy’s mother has taught me, is teaching me still…this post was an article that was published in that last issue of Hope Signs – a newsletter of L’arche USA. enjoy!

jaja

when my daughter was born with down syndrome, the views of the people in our faith community regarding her diagnosis swung widely back and forth on a spiritual pendulum.

on the one end she was an angel.

i remember a very levelheaded man helping me carry her car seat out to my vehicle one winter.  he told me he’d be praying for us as we drove home.  then he nodded towards mazzy, who was barely three months old, and said, “but I know someone is praying for you already.”

i was confused.

then driving, it came to me what he meant.  he meant the infant in the backseat must have full knowledge of our situation and that her special connection to all things heavenly was working even now on our behalf.

mazzy

on the other end, the pendulum swung to the view of disability as affliction.

one night a friend came by, our daughter again only months old.  he let us know he had waited until we were settled in, but could wait no longer.  he had to tell us the truth: down syndrome was not of god and we tonight could begin praying for her healing.

i stood stunned with my brand new babe in arms and felt as though i’d been sucker punched.  i loved this friend, and over the coming days i engaged him in his views and debated various parts of scripture, but in the end i had to ask him to please leave our family be. i told him that if he was right then God would be able to tell me in some other way, but for now i wasn’t going to be praying for her complete healing.

i didn’t buy either of these spiritual takes on disability.  they rang false and missed the point and the person, entirely.

above all else, they both lacked love.

best

i went on a spiritual retreat a few years after mazzy was born and found jean vanier’s From Brokenness to Community while looking through the bookshelves there.  i didn’t know anything about l’arche at this point, but as i read my heart started beating faster.

this is it!  i thought.  this is the right way to understand disability and spirituality!

when jean vanier meets a man or a woman with a disability, he has the unique ability to see god clearly.  from the start, he had so oriented himself towards god that when the moment of decision was before him, he answered, “yes lord” in regards to living his life with those men and women.

that ‘yes’ has blessed my life and many others besides.

friends

my daughter will never measure up to the world’s standards.

not to its standards of physical beauty or of intelligence.  in this world’s eyes she is flawed and she will never attain its approval.

i remember then that if it is impossible for her to attain it, then it is meaningless.

mazzy is a beloved child of god.  he is completely pleased with her as she is.

mazzy is not an angel, she is a human being.  she is not afflicted, she was crafted in love on purpose.  so physical beauty and human intelligence get put in their proper place and i give thanks for this pointing towards true north once again.

forever

i so appreciate the spirituality of disability i’ve found in l’arche and the vision of jean vanier.

it imparts freedom to those with eyes to see and ears to hear.

it pays attention to the truth tellers among us who testify with their very existence about what is true, what is beautiful and what has real meaning.  i respond to jean’s vision by giving financially to the men and women who are living out that vision every day.

i gladly give whatever i can to support a spiritual view of disability that loves the same human being I love.

vist l’arche’s site here and make a donation in mazzy’s name if you feel led

a beautiful interview with jean vanier 

Posted in disability, faith, good life, love, mazzy, real life | Leave a comment

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building a platform

building

i started writing this blog with no end in mind.

i’ve always written.  ever since i was little and the blank, yellow page seemed safer than any other place.  i’ve got thirty journals for people to burn after i die.

then came the internet.

boy

staged

i lived in a small town in ohio when i wrote my first blog post.

i had two tiny children and i’d moved away from my friends, from my family.  i started sending out my little thoughts on the line for them, for anyone.

for myself.

scripted

glue

and it worked.

people i loved who lived far away knew how my children grew.  they knew what i was thinking about.  they knew what i’d been up to yesterday.

years went by and i met real bloggers.  bloggers who had followings and wrote books.  i had already thrown my hat in the ring it seemed, so i kept writing and writing and writing.

m'lord

welcome

i’ve written enough for a good sized book.  which i might try to get an agent to help me share with the world one day.  but i’ve also written myself into a corner.

i never counted on my voice on this blog sounding like one particular thing.

but it does.

if i had to categorize this blog it would be a Christian, Married Lady Blog.

blogging to me now is little more and a little less than picking up a script and reading the lines i started writing for myself back there somewhere.

these days i feel like an actor on a stage when i sit down to write.

m'lady

maestro

i’d like to do something else now.

i think it’ll look a little less flat.  it will have three dimensions.  a bit more depth with a few surprises.

a real place that i made with my hands.

i’d like to write more than considerate neighbor.

so i think i will.

pages
maybe you will miss me.

that’s okay.  give me a call or drop me a line.

or maybe you won’t.

that’s fine, too.  there are many Christian, Married Lady Bloggers, so i trust you will be well provided for.

thank you for reading.  thank you.  thank you.  thank you.

i’m sure we’ll meet again.

Posted in contentment, new year, real life, writing | 11 Comments

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the invisible ties that bind

solo

a mother can forget her child.

it’s true.  it’s in the bible.

and it’s true in my life.

i like to go and have a cup of coffee alone.  i’ll read until i forget where i am.  i like to get lost in thrift stores and have long conversations with friends i love.

i can forget that i ever had a child, let alone three.

at least, that’s what i tend to imagine is true.

place

rooftops

the sky is so blue like my only son’s eyes and when he isn’t okay i can’t think of anything else.

i dream solutions when any three of them has a real problem.

i reorder life to meet them low and lift them high.

like the dark blue sky over a snow-covered place, each one of their souls have been trusted to us.

it is no forgettable thing.

son

so i stay tied at the other end of this rope that binds me to three small humans right now in three small classrooms.

just because i can’t see the invisible length that keeps me theirs, doesn’t mean it isn’t there.  

the rope gets let out further and further the further they go out into the world.

and i need to remember that this world is a beautiful place.

it is.

it still is.

this globe crisscrossed with all the ropes that tie us to one another.

no shadow

i know that the bible is right, that a mother can forget her child.

i’ve seen it, i’ve read the stories.

but that’s no place for you and me.

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jesus died for you and other sentences that don’t mean anything

frostbite

waves

“i’ve heard so many teachings on why he had to die, but it never seems to stick in my head.”

i’m looking out at the frozen neighborhood.

sentences can freeze and crack, too.

the meaning they once held is nowhere to be found.

they are brittle, ready to snap.

justice

“the question of sin used to keep people up at night – but no one even thinks sin exists in our culture, so why care about the cross?”

sin is just a word.

is there a better one?

death.  destruction.  evil.  wrong.  wicked.  crime.  offense.

those words are still alive and well.  green with life.  filled with meaning.

we say and hear them everyday.  they matter.

but sin has frozen over.

trees

has there been a culture so righteous as ours?

each one of us able to judge with such accuracy about what is true, about what is not allowed.

everyone sure of our own viewpoint and able to humbly bow before the opinion of another no matter what it is.

so permissive and so unbending.

marilyn said it best.

“in this culture everyone thinks they are god.”

sunset

it’s a cold morning.

cold enough to kill a man.

never have we needed new words like now.

new stories.

new sentences.

i pray for them to come soon.

i pray they come before the whole world freezes over like hell itself.

Posted in christian culture, real evil, real hope, the church, the weather, writing | 1 Comment

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santa is over for now

christmas

the holidays.

sigh.

the holidays found me bumming a cigarette off strangers and wandering through the woods with bright sunlight blinding my eyes.

there was so much to do.  so much to get done.

i felt the absence of youth this time around.

into the woods

doors

when i was a little girl we would put our christmas tree together.  first we’d assemble the metal trunk pole.  we’d place the color coded branches in piles and then stick them in at just the right time.

it was thrilling.

it was just as good, if not better, than driving out to a christmas tree farm and chopping down an honest-to-god, real tree ourselves.

falalalalala

bright lightsmy mother loves christmas.

and she handed down her love to us like another wrapped gift under the tree.

but this year, i don’t know.

i didn’t feel the thrill.  i felt the work and the budgeting.  i felt the plans and the going here and there.

i saw the kids and i heard them, too.  they were in the wonder and i was…watching.

bullseye

it’s okay though.

i don’t have to feel everything.  i don’t have to experience every pang of holiday wonder each time in order to say “happy holidays” to the lady at dollar tree and really mean it.

i don’t.

but i tell you what.  when those kind folks in the park handed over that marlboro red with such compassion, the camaraderie of getting through the holidays written on their faces, i nearly wept at the milk of human kindness.

“i really appreciate this.”

and i stumbled away down the worn path into the wide open woods wondering what next december might bring.

Posted in christmas, contentment, new year, thankful | 5 Comments

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he loved me

dead
i like to remember that i was without hope and without god.

i was foreign to the promises of good towards me.  i was separate and excluded from all of it.  no luck around every corner then.

until – and then he loved me.

close

he came and spoke peace, calm in the storm.

peace.

i was far off, delirious with anger, an object of wrath most days.  he came close and said it slowly.  i was as treacherous as a snake.

peace.

and when a dead thing hears a kind word, it cannot, does not understand what is being said.  true kindness though, the beating heart kindness of a loving god, well…it is steady and constant.

it beats out it’s indecipherable code to dead ears.

i needed a code breaker.

living

i was more than lost.

i was deceased.

little more and a little less than a puppet strung up by whichever spirit wanted its way with me.

a zombie, a dead man propped up, weekend at bernie’s.

and then a brilliant mind broke the code and told me the good news close like a whisper to my ear.  like a lover with a promise.  like real breath on a real face.

he did it to make me alive.

with christ

so i am no longer a stranger in the house of unexpected goodness.

i hope this year that god will strengthen you.  i hope that his close words would fill you in your inner being so that christ may dwell in your heart through faith.

i’ve broken the code, so hear the good news.

you are loved.

Posted in death, faith, love, real life | 2 Comments

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when it doesn’t snow

spray snowi’m walking across the wooden floor and grime comes with me.  there is dirt under my red slippers.  boots, kicked off on a towel also dirty, lay on their side with mud caked on.

there is no snow to play in this year.

no soft white quiet to cover the whole mess of the earth for a little while.

it’s a muddy christmas.

bottom

agnes

my kids are getting older and i feel the slip of their days.  i try to hold them closer and they tug away.

they say what i wouldn’t want them to say.  they do what i hoped they wouldn’t.  i start to wonder what exactly went wrong and when.  how much is my fault and what can i start to fix today?

it’s christmas eve and the sky is grey.

no flakes falling into a blanket to shhh the world into peace tonight.

charlie brown

i bring out a bag of pine cones and we cut up paper squares.

abe just wants to spray the can of snow.  mazzy carefully glues her ornaments on.  eleanor is on her second cone.

we concentrate together.  we laugh and take turns.  then we take it all outside.

we shake the can in our pajamas and more snow than we anticipate covers our work and ella’s hands and the muddy, wet ground underneath us.

snowo christmas treeoh christmas tree

sometimes you have to make it yourself.

christmas can come together to be more beautiful than you can stand.

you’re going to have to cover your face like children hiding their eyes.

somehow the small, imperfect efforts of our lives are going to shine and be greater than the sum of their parts.

grace and peace to you this christmas.

Posted in beauty, childhood, christmas, the weather | 3 Comments

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the mother of god

fabric paint

one place in my heart holds a grudge against humanity and all my friends.

weddings and birthday parties.

whenever i catch wind of another girl’s birthday party happening with no invitation for mazzy, i plot a little murder in my heart.

every time i see friend’s daughters walk down the aisle trailing after our dearly loved companions, i must resist the urge to oops! trip them as they pass us by.

soldiers

sheep

but that’s okay.

because god answers the prayers we didn’t realize that we’d prayed.

i thought those murderous thoughts were just evidence of my sinful nature – not prayers.

but i was wrong.

dear lord,

let mazzy get to do these things that little girls delight in.  let her be a flower girl with a basket of blossoms and let me drop her off at a bowling alley with a present in her arms. let her be loved and accepted like all these other lovely children.

amen.

god heard and he did me one better.

marywise man #2wise man #1

this year the christmas pageant was cast and i held back tears.

ella and abe were wise men.

and mazzy?

mazzy was mary.

mother of god

so take that flower girls!

in your face birthday parties!

mazzy, set apart for honorable, holy times.  mazzy, holding the cabbage patch christ-child in her arms so carefully.

mazzy, the mother of god.

Posted in childhood, christmas, disability, forgiveness, friends, mazzy | 9 Comments

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tell me the old, old story before i hurt someone

sit at your feet
i’m remembering last night.

i’m remembering the tone of his voice when he interrupted me.  i’m remembering the exasperated sighs when he had to do what i do all the time for children.  i’m remembering his apology that seemed half-hearted.

i’m making a list of the wrongs done to me.

i’m fueling unforgiveness in my heart, in my marriage.

i’m wondering how to get an eye for an eye.

i’m preparing for a hard conversation. i’m drinking down self-righteousness with my coffee.  they both are bitter, but i’m getting used to it.  it’s an acquired taste.

i need them both some mornings.

good books

copywork
i reach for my bible and look for god to back me up on this.  i open it up to where i’m at in luke.  always reading through the old, old story – jesus is teaching today.

“don’t pick on people, jump on their failures, criticize their faults—
unless, of course, you want
the same treatment…be easy on people; you’ll find life a lot easier.”  luke 6: 37-38, the message

oh right.

deep sigh.

would i like waking up to my disappointed face at the breakfast table?

would i enjoy a list of each remembered thing i did wrong from the night before?

does that sound good?  does that sound like love?

i have to read it a few times to accept the words.  i’m waking up to pick on my husband. that’s my morning plan.  i want to jump on his failures and criticize his faults.

what exactly will that do?

it will bring about the same treatment.

i want to be loved well, but i refuse to love well.

stories
oh lord, i wonder if i’ll ever believe you.

instead someone has to answer for the many wrongs done to me.

never mind that they are small.

never mind that i could overlook them.

never mind that they were apologized for.

i could forgive them.  i could go easy on a person.

my heart is slow to learn your ways, jesus.  don’t stop telling me the same thing.  i need to hear it every morning.

i pick up my bitter cup of coffee.  this is no garden of gethsemane.  this is just marriage -this is my life.

these are small things.

help me, lord.

edited repost from the archives (thankfully)…

Posted in forgiveness, jesus, love, marriage | 2 Comments

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when madeleine l’engle kicked my ass

corinthians

after i hung up the phone and told joshua what i’d just learned, we knew that our tiny church plant was done.  there had been signs leading to that moment in our kitchen.  but this was it.  the final nail.

he leaned over onto the counter and put his head down.

and that was a while ago now.  almost two years.

two years of trying.

two years of getting over it.

i’ve never had words to talk about the whole experience.  i’ve only had the wanting to get away from the one word that spoke most loudly.

failure.

winterberry

there is the quick looking away and ending up just saying, “i don’t know” when i am asked why did we do this thing.

did god really tell us to move to detroit and start a church and we failed?

i don’t know.

did we want to move to the city and convinced ourselves that it was god calling us?

i do not know.

i don’t know.  i just don’t.  the roots of certain choices we make are buried deep and even when i dig them up and slice them looking for the answer in the cross-sections – even then it’s not that simple.

so i sat down and talked with madeleine l’engle.  sort of.  i’m reading her book.  books really.  just finished wrinkle in time and am now reading walking on water.

she saw me coming, i think.  she’s very personable, mild-mannered even and all friendly like – until.

until she isn’t.

until she pulled back and hit me dead in the face.

fence

“One time I was talking to my spiritual director and I was deeply grieved about something I had woefully failed at.  Finally he looked at me and said calmly, “Who are you to think you are better than our Lord?  After all, he was singularly unsuccessful.”

That remark has stood me in good stead, time and again.  I have to try, but I do not have to succeed.  Following Christ has nothing to do with success as the world sees success.  

It has to do with love.”

i reeled backward at the force of the punch.

i have to try.

but i do not have to succeed.

following christ has to do with love.

the penny dropped and i have my answer now.

walking

we moved to detroit to try and start a church because we wanted to say i love you to jesus christ.  that’s why.

and did we do that?

yep.

we totally did that.

100%.

i didn’t fail at that.

the why and the unearthing at the root for the reasoning behind it – it’s still important. it’s right and good to learn from what we did and what went into the choices we made.

but the waste was never waste.

we told him as loudly as we could manage at the time.

peace

so let this be a lesson to you.

when approached by a gentle choir director or a helpful volunteer librarian, someone who looks as though they would not hurt a fly, you may want to keep your eyes on their hands and look close on which foot they are placing their weight.

because there is power in lives well-lived and written down.

there is strength in years closely maintained with the fine-toothed comb of truth.

beware the left hook of madeleine l’engle.

Posted in love, thankful, the church, the past | 8 Comments

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