considerate neighbor

slay trick or you get eliminated

September 29, 2017

this summer there was internet buzz over the near eradication of down syndrome in iceland. people wrote articles against eugenics and disability. and i agree, it is terrible, right? deciding that your child probably shouldn’t live because they may have down syndrome? i mean, geez louise.

mazzy wasn’t too concerned though. she listened to a lot of beyonce this summer. last year we saw her on the formation tour. we’ve practiced the butt-slapping move from the all the single ladies video in our kitchen. honestly, maz knows that routine better than me, but i’m working on getting the formation choreography down.

when we were getting ready for the concert, i tried to put on jeans and my smack it, smack it sweatshirt (see 7/11) and mazzy was like, “no mom.”

so i put on a dress i don’t normally have the confidence to wear and some beyonce-worthy heels and had a darn good night orchestrated by my daughter who was born with down syndrome.

when beyonce had her twins there was a part of me that hoped one of them would have down syndrome. she’s such a champion, such a beating heart for the world to see kind of performer, i just knew she would have been a champion for her child, too.

then the world would see it and take note that if someone so realized, so accomplished, so flawless could birth a child with down syndrome and accept them and love them then maybe they’d change their minds and nurse them at their breast, too.

but she didn’t.

i did.

in the song formation, beyonce sings, slay trick or you get eliminated.

beyonce learned this truth young. you either slay, you look perfect, dance perfect, sing perfect and live perfect – or you get eliminated. you get sent home like a challenger on star search. you don’t get to be queen. you won’t get to smile back at thousands of fans who paid hundreds of dollars to see you in the flesh.

if you don’t slay, you get eliminated.

really the line means, kill or be killed.

i love my daughter because she’s the most original thinker i’ve ever met in real life. her mind can’t conform to the world’s expectations so she soars above them. her perspective is fresh, always unlike anyone else’s.

mazzy is untethered from the typical life and moves through her days in a way fewer and fewer people are born to. she’s beyond the rule of slaying or being eliminated, more beautiful and realized than all the stadium concerts and hard work to become the baddest woman in the game.

i think beyonce could learn a thing or two from mazzy.

so here’s what i’d say to a pregnant chick with a baby in her belly that may have down syndrome. it’s okay. perfection is overrated. a perfect life is an oversight, that’s the real mistake – not your son, not your daughter.

eliminating everyone who doesn’t slay?

we’d be left with a world filled with murderers and death.

beyonce doesn’t want that. mazzy doesn’t either.

listen to mazzy. listen to beyonce.

turn the music up real loud and dance in the kitchen with your children. then your light will break forth like the dawn, and your healing will quickly appear

Posted in beauty, disability, good life, mazzy, teenagers, the human heart | 5 Comments

raspberry beret

September 9, 2017

a funny thing kept happening as we walked alone in rows of raspberries. every spot we stopped to pick there would be a better one directly across the way.

each time the very next row would hold larger berries, branches with fruit threatening to drop from the weight.

how can it be, i wondered each time.

why is it superior anywhere but where i am?

so i laughed at myself.

i thought, isn’t that the way? isn’t it that i assume everywhere is better than where i end up? so fickle am i, i reasoned, so unwilling to be satisfied with what i’ve been given.

but no…

no.

i took a closer look across the way and found that it really was better over there. i had landed at the inferior spot over and over again.

i looked at mazzy and she looked at me.

what of it?

what if the other rows have more?

what if i have to settle and make do and be content even while knowing there was more to be had?

can i do that?

some of us can do it much better than others.

some of us can not. we refuse to and are eaten alive by what is on the other side of the row, the place we can never quite reach.

and what about me?

what can i do?

i’m learning to count my days with you, child. not because of life expectancy or because i have a spiritual practice of thankfulness.

i’m learning from you.

there are so many rows that will ever be out of your reach, girl – and i would smash the entire world to give them to you if i could.

but nothing like that works.

only the truth of you works.

the truth that if something is unavailable to you, dear one, than it isn’t worth having. it changes before my eyes and i see it for what it is.

through your eyes this whole world has been unlocked. so let’s camp where the berries are too green and the branches are barely laden. i can see it now.

there’s no place so golden.

Posted in beauty, contentment, disability, grief, hidden life, mazzy, outside | 3 Comments

whether or not you have ever dared to pray

July 21, 2017

maybe the light at the end of the tunnel is really a lamp lit in the window.

seems the largest part of my life is a grasping, a strangling, trying to make a good thing and hold on to it as tight as i can.

it turns into a mist, sand, a memory and i open my hands to see nothing but the lines of time itself etched into the very skin around my bones.

but in all this ending there is a light.

a lamp lit in the window that welcomes.

maybe i’ll arrive at the other side at night. the secret then is the secret now – to trust that i am not left alone. to seek in that darkest of nights the light lit for me by the one waiting for my arrival.

to finally make it home.

the light at the end of the tunnel has been seen by those who come back, but they haven’t walked the path to it. they haven’t had the reunion that i will know.

they didn’t climb the stairs inside to find the beds made up with clean sheets waiting and no one yet has told the tale of the sunrise, lamps blown out and the first new day right outside the door.

i want to be there on that morning.

Posted in beauty, contentment, death, doubt, faith, outside, time | Leave a comment

maybe i might love you

July 17, 2017

friends

maybe you’re like me.

maybe light has always hit friendship at a strange angle.

i’ve always looked for the true friend, the real friend, the friend i could trust no matter what.

and i’ve never found her.

i’m watching my daughter play in the yard with her newest friend. hours of play fly by like seconds and they say this over and over.

“we’re sisters. we’re twins. we’re twin sisters.”

everything the same. everything just like me.

girls

it is good not to be alone. when you’re a child you reason like a child. the hope and belief that you find someone who sees this world just exactly the same, it’s an intoxicating proposition.

part of me wants to pull my girl aside, keep her out of harm’s way.

“friendship is dangerous ground.” i want to whisper. “don’t hand over your heart too quickly. keep safe, child. keep safe.”

alone

because at some point you realize that the person you thought saw the world just like you doesn’t and all the earth becomes shaky ground. nothing abandons like a friend.

i’ve had friends lie and i’ve lied to friends.
i’ve had friends change the course of their lives and i’ve changed course on friends.
i’ve had friends tell my secrets and i’ve told the secrets of friends.

there is no perfect friend.

just human beings wrapped in all their troubles and all their glory. just people who mess up and say their sorry. or not.

but peter and jesus met up on the beach. after god had been left high and dry by 12 of his closest friends, they sat on the shore and built a fire.

jesus seems to believe that friendship is stronger than death.

child's play

i don’t why he thinks that.

why he believes that you lay down your life for your friends. that brother and sister, mother and father, are those who hear his voice and do what he says, not flesh and blood.

god has a strong redefinition of relationship for us and friendship is nearly front and center.

i don’t know why he thinks that.

but if i’ve believed anything he’s said – i’ll believe this part, too.

maybe i might

so i’m sorry my friend.

i’m sorry if i’ve hurt you and neglected you. i’m sorry if i abused your trust. let’s meet at the beach and swim to the sand bar. we can stand there and i want to hear your heart and tell you mine.

let’s trust the great god of friendship. let’s talk through the moments that we didn’t think we’d speak of. let’s cry and pray and laugh and talk some more.

and on that day when one of us has abandoned this old world entirely, let’s remember how peter jumped into the lake when he saw his risen friend.

let’s believe that friendship is stronger than death. and as we grieve, let’s not forget that all our conversations will pick up right where they left off.

repost from the archives…

Posted in friendship, jesus, me, you | 12 Comments

moms forgiving children forgiving moms

May 14, 2017

i broke ella’s tea cup.

she found a set at an estate sale that was pretty perfect and upon carrying it in from the yard, it slipped from my hand.

way to go, mom.

its tough not to venerate your mother. to gloss over the past and the short comings and hope your own children will do the same for you. its like the funeral phenomenon where the deceased suddenly gets saint status even though they broke your heart.

a mother is broken.

she messes up and forgets about you and ignores you when you need affirmation. she says the wrong thing and she hurts you and you get to see her mess up in a front row seat.

moms are given brand new babies that are pretty perfect and they break stuff.

but they make stuff, too.

both of our mothers rejected a paint by numbers life, picked up a brush and now both of our daughters are original masterpieces.

both of our mothers rejected a spirituality that told them what a woman was and hammered out a relationship with god like a blacksmith and now our daughters wear crosses around their necks forged in refining flames.

that’s the thing about a mother, she lives life right in front of you. you invade her world. she lives for two or three or four or five, to be with her is almost like to be with yourself.

there’s no hiding for the broken mom.

i threw the pieces of the shattered cup away last night.

i apologized to ella and she forgave me quick, like the way i’ve forgiven broken plates and cups before. i noticed it and was thankful that i’ve never held broken things over her head, that i’ve been quick to forgive.

i woke up this morning and realized i could have glued it back together.

i dug through the garbage, coffee grounds and banana peels. old tea leaves and paper plates. i looked through it twice. i found everything but one piece.

sometimes a mother looks through the garbage to find what is still valuable to make things better.

sometimes there’s still a missing piece.

and that’s okay.

because we know you tried and still try.

its that you looked through at all, that you were willing.

i forgive you mom, just like you forgave me.

imperfect mothers are a given, forgiveness isn’t. i recommend embracing both so your children know how when the time comes.

Posted in childhood, forgiveness, mothering, the human heart | 1 Comment

the great intelligence of kindness

May 1, 2017

mazzy has been busy with her high school musical.

she’s been spending nights at rehearsal, putting together costume ideas and driving to the performing center right from school with friends who have cars.

driving in a friend’s car. walking together out of the school to the parking lot and dropping her purple backpack onto the floor of a friend’s car. sitting in the passenger side and feeling the wind by the lake on her face in a friend’s car.

she’s loved being a part of it.

when they get there, everyone says, “hi mazzy!” with hugs and smiles. she’s hanging around backstage waiting for her cue while girls in dresses with crinoline fly by and boys in tuxedos quick change into argyle sweaters.

we came to opening night and there she was on the actual stage for all of eight minutes in a 2 1/2 hour show.

it was hard not to feel disappointed.

we watched her and then she was gone until the final number where she was buried behind much taller teenagers with many hours of singing and dancing logged.

we waited for mazzy to come and receive her admirers and her flowers. when she saw our little group her smile was bigger than her, bigger than the lobby. any and all disappointment was dwarfed by her joy.

“you came! i can’t believe you all came!”

there is a singer who stole the show. her voice in the mouth of a senior in high school makes you wonder what the future has in store. i’m a little star struck when she comes out later. the wig is gone, the makeup is off. we tell her how much we enjoyed her performance, but she hardly hears the praise. she only has eyes for mazzy.

“mazzy! you were amazing tonight!”

i watch her hug mazzy and i know that she means every word.

the star and the girl whose feet barely touched the stage.

kindness is its own form of intelligence.

it is the sort that you can’t test for. it will only be experienced. kindness can’t be compared to last years scores so it sounds unimportant, insignificant. but tonight seeing the humility of this talented singer telling my daughter how wonderful she was tonight, i know there is something better than stage time.

and mazzy knows it, too. she’s known it all along. she’s had to learn it in ways most of us never have to.

there is vulnerability in kindness that sets things free, that loosens the strangling cords of the expectations of this cut throat world, there is genius there.

“of course we came mazzy!”

where else would we be?

you child are the great heart revealer. the state of a human being’s heart is plainly visible around you. who embraces you? who avoids you?

i have both failed and passed this test of yours, thankfully it’s not offered yearly, but daily – and so here i sit with my sharpened number two ready to learn what kindness means again today.

Posted in community, friendship, high school, inclusion, kindness, mazzy, pride, teenagers, thankful, the human heart | 4 Comments

the reliable enemy of good friday

April 14, 2017

our cat is pretty reliable in this way – if we open a window, soon the cat will appear there on its ledge. he can also always be found when we open the back door, trying to run out between our feet and prowl these flowering yards.

the other day he caught a bird in flight. he pierced its neck with his tapered, needle like cat teeth. we stood around and stared down at its grey feathers puffing up in the wind against the grey sidewalk. none of us knew what to do. not even the cat.

today is good friday.

the day we celebrate an innocent man taking the blame for what he didn’t do. it’s a tough mystery to unravel. how when we love people to know where is the line of when we speak up for the wrongs done against us and where we just bear it never saying a word.

i tend to lean harder on one side or the other.

either never able to suffer an offense done to me, always defending myself, making sure everyone knows loud and clear, or quietly and passively, how they’ve hurt me.

or i keep it all inside. folding wrongs done against me like shirts, one on top of another and another, until my heart is nothing but drawers filled with memories that i go right to and pull on when i like.

we are pretty reliable in this way – if a wrong is done to us, we have a way of dealing with it that likely does more harm than good.

the other day a man was caught in the thorny, razor-sharp teeth of his natural enemy and when he was dead, no one knew what to do. not even the one who had killed him.

is it untrue that people live so much of life just coping from the ways they’ve been hurt? it sounds bleak and constricted and like a hell of a lot of work. yet, i’ve got a feeling based on forty-two years of living and nearly every important conversation i have…i’ve got a feeling that it is true.

that man caught in the jaws of his enemy, the bird on the cement, all this end of living can lead us to another way to live.

not with a chest of drawers heart and not having to rake your claws across anyone you think has done you wrong.

there is the good friday way.

we scooped up the innocent bird and walked to the trash can. children felt responsible and we worried over the taking of the life. we lifted the black bin lid like rolling back a stone.

then from joshua’s hands we thought the feathers still ruffled from the wind, but no. it fell from his palm but before it hit the ground it was up, seemingly unwounded and it flew.

we watched it fly and we celebrated how unharmed it was from the wrong done to it.

a promise made of another way to leave this earth.

Posted in death, easter, forgiveness, good friday, resurrection | 3 Comments

stout-hearted

March 14, 2017

i’m going through the motions. laundry. dishes. downstairs in the basement i hear change in my son’s jeans as i go to put them in the washing machine. i dig around in the pocket and bring out three coins. they feel like quarters in my hand, but when i look at them, i see three words staring back at me.

no cash value.

it’s strange the things that make us calm down. it can be random what causes us to suddenly feel peaceful. but for me it has always included an element of surprise.

last sunday a guy named johnny prayed that i would have the courage to change my habits.

is that what is required? courage? i was under the impression it was a force of will or better yet – a surrendering to my own inability and asking for help.

but courage?

i hadn’t thought about it like that.

all the synonyms for courage are breathing life into my soul today.

audacity. grit. spunk. backbone. pluck. mettle. nerve.

do i have the audacity to change my own life?

someone told me recently that when life becomes less of a gift and more of a burden there are three things you need to already have developed.

deep friendships.

an intimate relationship with jesus.

and the ability to rest.

i’ve been running on the fumes of a couple of these as of late. i can’t seem to force myself back either. so to see these coins, i can’t explain it, but it helped me today.

that money is of no consequence to god has always been a warm blanket straight out of the dryer to me. our current cultural climate is tossing out everything that doesn’t make more money. art – who cares? human compassion – what does it matter?

the bottom line has become the party line and i think it’s been eating away at my heart.

i want coins that say no cash value on them. i want to take those coins into the grocer’s and buy milk and wine and food without money.

i want to remember what matters.

i want the courage to change the things i can.

Posted in depression, faith, hidden life, provision | 1 Comment

and i’m so glad

March 3, 2017

joshua and i celebrated 19 years of marriage a couple of weeks ago. the first four years of it there were no children. no mazzy. no abe. no ella.

i remember the counseling and the fighting. i remember how hard it was to suddenly be married in a new city where i knew no one. i remember not knowing the first thing about putting someone else before myself.

someone told me recently that the word “saved” in the context that i used it was “tacky.”

but i didn’t mind because i know what it feels like to be saved.

over and over again, i’ve been saved.

this anniversary was pretty much spent with the kids. we went out to dinner alone one lovely night and woke up alone one lovely morning, but the minutes and hours ticked by as fast as time tends to.

at this point i don’t know marriage separate from kids.

and i like it.

i didn’t always like it. when i was drowning in diapers and depression, i used to count down the hours until joshua came home. i used to count down the hours until i could drive away with a friend and not be a mom for two or three days. i used to…

but time has ticked like it does and i hear the warnings from empty nests. don’t put too much of your life into these kids – they’ll be up and gone before you know it. then where will you be?

who will you be?

i’ll be the same. lonelier. happier. sadder. but i’ll be the same. here with my saving god that has taken me from selfish and young to 40 and kind to 60 and who the hell knows.

but not give everything to them now?

…does not compute.

all my days are written.

yours are too.

19 years has flown though, hasn’t it? if you were there and saw two incredibly young and naive and broken people tie the knot that friday afternoon in greenfield village – can you believe that was 19 years ago?

i smiled so big that day that my face ached by the end of the night.

what was i saved for and what was i saved from?

josh, mazzy, abe and ella.

and you.

i was saved for all of you.

Posted in family, grace; free gifts, marriage, mothering, redemption | 4 Comments

a blog post about a person with down syndrome

February 7, 2017

i had a dream last night about bloggers who write about their children with down syndrome.

some are so famous online that you’d recognize them in public.

in the dream i was walking by lake michigan and a mother had set up her kids for a photo shoot complete with lighthouse in the background.

mazzy

mazzy turned 15 a couple of weeks ago.

last night she was asked to be an escort in the mr. blue devil event at her high school.

mazzy continues to unfold like a flower.

i don’t share it enough.

i share it too much.

she’s a person. she’s her own person. she’s my responsibility. she’s fine.

mother and child

what is it that is so compelling to people about down syndrome?

why do they want to read about it? why do they want to eradicate it? what’s the mystery to be solved there?

joshua said recently that people are obsessed with the idea of their worth. that we all have a slight notion that our lives are valuable beyond measure. i agree and i wonder if a person with down syndrome pushes the bar just a little bit higher.

the qualities that make us human; love, kindness, vulnerability, joy and dependence – these are on display in a person with down syndrome in ways that we can’t replicate. we are literally unable to be so free.

but not mazzy.

sweet

so here’s a blog post about a young woman with down syndrome.

her name is mazzy and she’s 15 years old. she’s at school today taking drama class and art class and studying earth science. later on tonight she’ll do her homework and go to dance class.

nothing terribly out of the ordinary about her life but still we read away.

Posted in beauty, disability, good life, mazzy, teenagers, weakness | 4 Comments