I Have Never Once in My Whole Life Understood You

What if I’m spiritual, but I don’t believe in organized religion?

What if I want justice, but I don’t believe in organized rallies?

Should we open the zoos and let out all the animals?

Should we open the libraries and let out all the verse?

Maps are old-fashioned. They’re ancient. They point to places that aren’t even there any more.

Did your book clubs last? Mine started strong. I still read though. Every night I read.

Will our schools stop learning? Will we unspool education into threads?

In college they make you say — declare—what you will learn. Your major. The college says you have to —that you have to want to — learn one thing more than any other thing.

Study until they say you’ve studied it enough. Paper in a frame. Hang it.

I never not once in my life understood college. Not one time.

The transfer of knowledge from one person to another.  I dropped the baton. Then I found stuff on the ground I liked better. Ants and acorns. Shiny objects.

I thought things would make sense when I got older.

I eat healthy but I don’t believe in organized nutrition. Avocados can pray or not pray, as far as I’m concerned.

I can’t kneel at church. I don’t kneel. Don’t you know it’s taken me this long to stand tall, shoulders back, head up? Not everything is my fault.

I don’t believe in organized exercise. Pilates killed aerobics. Aerobics killed black coffee and cigarettes. If I want to run I’ll run to the basement and scream while the washer’s on so the neighbors can’t hear.

I drive but I don’t like organized transportation. Why should the government tell me where my sedan does and does not belong. Our old gray pickup growing up had three gears on the steering column. I stayed off the roads, so the government never found me. Underage driver. Coughing and sputtering and clouds of dust. Jerk shifts. I killed it.

I grew up far away from here. You never went there.

My friend Missy got her license and ten minutes later almost murdered us. Headed home from school at 90 mph. In some places 16 is still young enough to kill your friends.

I need a heart but I don’t believe in organized transplants.

Isn’t an audience just organized listeners?

If your alphabet isn’t organized you have a learning disability.

What if I like people but not all at once? What if I like people scattered, random, a little lost.

I have never once in my whole life understood you.

I want to make a church out of something you can’t see. What’s that sound? the kids will ask, looking up into their parents’ eyes. Eyes burning with love. With fire. What’s that sound?

We are closer now than we have ever been.

I have always wanted a god that had something to do with cardboard. Flea markets. A shaggy Shepherd wet from a storm, it shakes and the water drops fly. Who knows where they’ll scatter.

I miss people I don’t even know. I want to be with you. I want to zig and zag to get you a tissue in time when you sneeze. I want to be everything our Lord and Creator meant me to be. I want to share it with you. Everything I have.

But not every time.


I’m a Bitch, I Looked it Up

As a middle-aged woman, I’ve ninety percent stopped smiling. It’s not that I’m not happy. I don’t even know why I should have to explain that. I just don’t see the connection between, say, living my life and walking around with a grin painted on my face.

I’ve never really worn makeup. Maybe that’s what a smile is, another decoration for your face. Which makes us Christmas trees?

I went to Paris years ago and the guidebooks said don’t walk around smiling all the time or they’ll know you’re American. It being the age of Freedom Fries I wanted to, one, reflect well on the United States and, two, pretend I wasn’t from there.

I remember how weird it felt not to smile. Like my muscles were going backwards. My face kept making the motions and I’d have to stop myself. At ease, face. Do something else. Like see Paris, Bombay, Antarctica. The moon. Even though I stopped smiling in order to conform to yet another culture, it became an open door.

In Seattle I walked with my best friend a couple weeks after she’d experienced something horrifically painful. I couldn’t even believe she’d left the house. As we made our way through the crowd a young man barked “Smile!” My friend walked on. I looked at this man and I wanted to yell that he had no idea, no idea at all. I still hate myself for doing nothing. Meanwhile, this man has no memory. To him it wasn’t an event, a moment, it wasn’t anything.

What if my friends and I shouted out helpful suggestions to the men around us? Smile! Stand up straight! Try some hair plugs! Loosen your belt and your belly won’t so dramatically cascade over your crotch region! We’d chuckle and then pound some more mini Snickers.

For my trouble, I’ll expect a smile back. Recognition, from you, that I’m charming. Acknowledgement, from you, that I’m witty.  I will need reassurance, from you, whatever it takes you to provide it, that I am allowed to lob my thoughts at you, and that you will have to drop all your parcels and grocery sacks to catch them.

Or you’re a bitch.

You know who doesn’t smile? Babies. You smile at them for months and they don’t smile back. They don’t have resting bitch face. They have resting genuine true self human being face. The face created by their Creator.

I don’t think bitchy is a look. Bitchy is merely the absence of what you were expecting from my face. Your expectations are not my concern.

Though even in my 30s, I thought I had to answer to those expectations. I couldn’t let you down. I thought I had to respond to every inane comment that came my way. Do you know you have the complete option to look blankly at people who make inane comments? About you, your children, your choices. You can let them hang. Sure it’s awkward. But they can stew in it. You don’t have to think up a way to make them feel less awkward. You don’t have to toss them a lifeline. You don’t have to save anyone or fix anything. Walk on.

There is a school of thought about Christian kindness. I am not able to address this.

I’ve stopping using exclamation points in emails to try to seem more fun and less serious. Serious leads to cold. Cold leads to bitchy. I think this is where people can stop liking you, also a deadly fear for a woman. I’m stepping off the ledge. I will sit at home alone with no friends, not smiling at myself in the mirror.

I guess I’m taking the chance. It’s starting to feel worse not to.

I looked up bitch in the online Oxford Dictionary. I wondered if they’d actually list the word but of course they do.

Bitchy as an adjective had one meaning. Malicious or spitefully critical. Malicious means the desire to harm someone. Which is weird because the crime stats show the ones harming others tend to be the dudes. What’s the word for how a man’s face looks before he harms someone? Does the witness say, yeah I knew he was going to kill his neighbor, he had a total bitch face.

What’s the antonym of bitchy? There is none listed.

There are synonyms for bitch: vixen, she-devil, and hellcat. I was surprised when I read the synonyms because my first reaction was that those words didn’t seem negative. Maybe I’m way off but she-devil and hellcat I can almost picture on sports jerseys.

The second meaning of bitch is “a spiteful or unpleasant woman”. This is the second reference to spite. What’s all this fear of being spited? This meaning is marked informal so that you know only to call a woman a bitch in casual settings like a barbecue.

Here’s where I truly was surprised. And lost some wind in my sails. Under meaning 2 point A– marked as offensive so you know you’re about to be offended– bitch means “a woman”.

A woman. Just, a woman. Any woman. All women. Cheerful or spiteful. This takes all the impetus out of the smiling then doesn’t it? Because I lose either way. So does your mother. And your grandmother. Your favorite auntie who sent you tins of oatmeal cookies in college. Your kids’ 3rd grade teacher. The principal with the little duckie collection. The doctor who delivered your babies. The surgeon who knit your heart back together, scowling over your gaping wound. Your senator.

It’s not easy to stop smiling.

Oh wait.

It is.


Am I an Atheist Christian?

Do I believe in God? I have no idea. I think the problem is I don’t believe in believing.

I’m not trying to be difficult. I just don’t know what it means to say that I believe in something. What happens if I don’t? Does it *poof* go away?

Do I believe in good and evil? Of the two, I choose good. Does that make evil weaker? Is belief like voting? Is belief off in the wings, waiting for enough of us to choose wisely? After the votes are in, will the winning belief take the stage?

Is belief like wearing 3-D glasses? It’s the same stuff in the movie but with belief you get a heightened experience?

Do I believe in spring because it keeps coming? Do I believe in winter because you can’t stop it anyway? Do people in Arizona not believe in winter? Did they stop believing and their winter went away?

Does Arizona believe in my snowman?

Can I believe in sounds? Symphonies and speeches and heart-moving sermons? Do I have to believe in the air that carries the sounds? – because some days I can’t tell the air from nothing.

Kids believe in Santa Claus. Some of them get toys, some of them don’t. The child with the scooter believes. The child with the empty stocking, used to believe.

If I believe in soap, does it clean better? Am I absolved from bathing? If I believe in hot baths should I walk around carrying a bucket of hot water and a towel, because that’s who I am, that’s what I believe? Should I lug the towel and hot water around in case someone needs them? Does that make me a believer? Or a lugger? Can you be a believer and not a lugger?

Is it my great privilege to still be entertaining the idea of belief at all? Does that mean I haven’t had enough crap happen to make me give up this topic all together?

But there has been a lot of crap. About a wheelbarrow and a half. It might have been halfway into that second load I started to wonder…what is all this open and shut belief? Believe in God and nothing bad will happen to you?

And when the hard times come, if you have a lack of belief, then you know what your problem is. Ye of little faith, if only you’d believed. The crowd says tsk.

Is belief like a really, really long wish? A wish you wish your whole life? A good luck charm. Hold it tight in your palm and shut your eyes and imagine what you want, imagine it so so so so hard.

Do I believe in things because I love them? Do I believe in people because I love them? Because I need them? Do I believe in God in case no one else cares about me? Who wouldn’t pick God to be on their side? Who wouldn’t pick the biggest, strongest, smartest deity on the block. OF COURSE you’d say God was on your side, pulling for you night and day.

Do I believe any of what I’m saying? Do I believe in myself? Do I believe in the cancer that grew in my neck? I saw my lymph node. It looked like baloney. Did I believe in the doctors? I don’t know if I did, but I thought it important that they show up. I didn’t believe God was with me or watching me or teaching me a great big fat lesson. It just happened. I can tell myself it happened for any reason, I can tell any story, quote any book, tape any psalm on my bathroom mirror. The belief can’t make it real, not if I curated it. The story – the thing I tell myself so I can breathe, so I can hug my children good night and ever let go – that story is my story. I write it, and re-write it, every morning, so that I can get out of bed. Which means, it’s a story. I made it up. I made 3-D glasses and put them on. So I can stand to look.

Maybe I believe in stories. Maybe I’m believing in myself as the creator of my own stories and not thanking God for giving me the ability to make them. Or maybe I’m cutting out the middle man.

Is there still time to become a believer? Could things go smoother here on out? Could I save myself a lot of trouble? I see the believers at their party. My old neighbor, she checked in with God on the tiniest decisions, God told her the answer, and she never looked back. I say, lovely. How nice to think belief is driving the minivan, while I’m back here piling rocks behind mud-stuck tires.

I can’t conceive of a life where I don’t question: everything. I believe in the questions. If I believe in anything, it might be them.

Maybe it’s not clear. Except for a time in my twenties, I’ve gone to church all my life, quite often thought to be a place for people who believe in God. Yet the more I attend, the less and less I believe. I’ve been told by a religious person this is okay. (Thank you, Episcopalians.)

And if I understand less than ever, there’s a contented sense of wondering. Maybe it’s moving farther away from categories, the yes/no’s, the columns. Heading out into the Great Something, something you feel in your gut. You are in some kind of communication with it, no? So what is that?

I’ve made some sort of loving liturgical commitment to my gut.

When I had the cancer, I was 25. A few days after the diagnosis, I sat on the edge of the bed. The shock was there but I was tired of crying. I looked out the window and it was a sunny July morning. Like you couldn’t believe. I tried to pray but shook my head, fuck it, and then I had this weird experience, a feeling and an image in my head of the prayers and church and God as I’d known them as so much scaffolding, and that scaffolding just buckling and falling slowly and gracefully and beautifully to the ground. And THAT was a peace that surpassed understanding. Peace like a semi-truck. Like wasabi lighting up your head.

Years later, I can’t begin to describe how beautiful it was. I still remember it, though I’m older now, the upstairs bedroom with the creaky wood floors, a crack moving diagonally up the wall, and, that weird dusty peace streaming in the window. Peace that was utterly familiar. And completely unknown.

I think of that peace sometimes. It lets me come in and visit, again and again. And every time I can get there, it’s like the peace was waiting for me to come back. Like it knew I would. Like it believed in me.


I don’t believe in God the Father or God the Mother, but more the Mother than the Father.

I believe in God my piano teacher who made ham and Miracle Whip sandwiches and Scotch Broth for lunch and her husband who said they called it Scotch Broth because there were wee little Scotsman in the can.

I believe in God the newspaper, crisp and clean until the moment it’s unfolded.

I believe in God the tufts of grass poking up through the cracks in the cement – cement! – and still it grows. I believe in God like that, that you could pave the whole world and all our hearts and still the grass, the thin, thin green, would find a way through.

I believe in God my grandparents and an impromptu picnic at the Legion of Honor all in our sunglasses and a Coca-Cola for everyone; I believe in God the best friend and sleepovers at her house and her dad playing Creedence Clearwater in the morning and feeding his parakeets; I believe in God the yippie dog who won’t quit and God the cat who could give a crap; I believe in God who didn’t create Earth, or will us here, I believe in God who is here like water is here, like helium and maybe arsenic are here, because they’re just here and we’re here and why not – why not try if it makes me one inch kinder than I am now.

I don’t believe in God with a map and a plan and making bad things happen to you so you can learn something. I don’t believe in prayer. I don’t think the imaginary letters get read but I think it matters that we write them.

I believe that you often get more than you can handle.

I believe in the God of questions, the God of no answers, the God of you think too much and why not close your theology book and give that man a sandwich.

I believe in God the flat and colorless, the bland and cardboard box. I believe in God the kazoo and upside-down soup pot banged on with a wooden spoon.

I believe a lot of things sound better when you bang on them upside down with a wooden spoon.

My daughter is banging on this world with a wooden spoon.

Saying, “Here. My life is your life. Believe it.”


IMG_0373A version of this piece was produced as part of Just Like You, a theatrical performance of stories written by mothers of children with developmental disabilities though a partnership between Well Arts and the Northwest Down Syndrome Association. The show ran January 10-18, 2014 at the Firehouse Theatre in Portland, Oregon.

I am posting this 11 days before her IEP meeting at Westridge Elementary School in Oregon.

Jesus was a Baby Girl with Down Syndrome

As Christmas approaches and my children learn their songs for the Christmas pageant, I’ve been thinking a lot about the first pageant my daughter was in. It was her first Christmas. She was seven months old. We were still very much coming to terms with her diagnosis. I don’t remember everything about that Christmas, I don’t even remember whose house we celebrated at. I know I had a lot of fears and worries. Like, a lot. It’s not that they’ve gone away, like a switch flipped and now it’s all golden and lovely. But we’re past a lot of things.

There are people who stick out in my mind as helping us get to where we are now. Like little stepping stones across the pond. One of these was our priest. An aging, white-haired male, everything that says traditional, gave us the nudge that set us on the path. He came over to meet our baby. He didn’t say all those stupid things about God sent you an angel or God wanted her to have the best parents. He didn’t say much really. Just held our darling and listened to our worries. And before he left he said all he could figure about life was that it was about love.

“That’s it?” I thought, hoping for some nugget that would make this easier.

It would make this, and everything, easier, but it was more like a seed than a nugget. It grew and grew.

And a few months after that visit, as the air turned chilly, he asked our baby girl with Down syndrome to be the baby Jesus. And I can’t even type that, four years later, without crying. (Damn it, I’m in a coffee shop too.) I’m not a very good God-follower. What I hear on Sunday seems to slide off my duck wings by Tuesday afternoon. And we don’t even go to that church anymore, but I never said thank you. So Father Stephen, thank you.

And, in honor of children’s Christmas pageants practicing across the nation, this is my Christmas pageant memory:

I look through her dresser drawers, pawing through the stacks of sleepers. Why did I wait so long?

“Do you have the camera?” I call to my husband

He can’t hear me. He can never hear me. If we lived together in a yurt he couldn’t hear me. I get the camera.

“Where’s the extra battery?”

My two year old stares at me from the doorway. He’s in red socks. How did I put him in blood red socks?

I haven’t talked to him about what’s going to happen – how in an hour I’ll drop him off with the director, a man whose name my son doesn’t remember, to walk with kids he can’t tell apart. But he’s two, almost three– eons older than my baby daughter – so I think he can handle it. He’s going to have to be able to handle this new life of ours.

My husband rushes down the stairs, he goes in the bathroom, leans in closer to the mirror and smoothes his hair with his hand.

“Does this look okay?” I say holding up an ivory sleeper with gold on the collar. We don’t own any more regal sleepers.

The church parking lot is already half-full an hour before the performance. Families with eager video cameras. My husband carries our daughter, asleep in the car seat. I’m glad she’s asleep because on the Excel spreadsheet I did of her sleep cycles the optimal time for her to nap is an hour before our cue.

I walk my son to the Sunday school room. He’s still in pull-ups. He can’t say all his words yet. He has impossibly huge blue eyes that look at me when I kiss him goodbye. He’s holding his stuffed lamb, not clutching, just holding, because he’s a shepherd, and shepherds take care of lambs, they don’t cling to them, and he seems to know this.

My husband and I sit down. The plan is for us to sit in the first pew, on the aisle. I will hold Margaret and wait for her cue. The priest approached me a few Sundays ago asking if she could play the baby Jesus. I couldn’t ask what I really wanted to ask – what would people think? So I asked an easier question. “Even though she’s a girl?” And the white-haired male priest said, “I like to think what made Jesus a neat guy was more than his gender.”

And maybe, more than his chromosomes.

The grandparents file in, my husband’s parents, my mother. They don’t go to this church and I wave to them so they can find us. My father isn’t there, but I think of him a lot in December because he was always happy on Christmas. My daughter’s godmothers are there. All the friends who came to my daughter’s baby shower, before we knew.

The hundred year old organ starts and the shepherds come down the aisle. My son, the one I’ve been counting on to behave, is scared to go down the aisle. My husband slips to the back and becomes the newest shepherd. As they find their places at the altar, he scrunches his six foot body among the pint sized boys, with my son cuddling against his plaid shirt, and I’m in love.

“God doesn’t make mistakes,” that’s what one of my friends said. “He knew she needed the best mommy.” I hate that shit people say. Like the angel comments. So help me I’m going to lose it if someone makes an angel comment.

And here come the angels, the little girls dressed in white, with gold garlands in their hair. Then poor Mary and Joseph, tired and poor, their sad donkey collapses at the base of the altar. Everyone laughs, which delights him. He has autism, or Asperger’s, or something, which I only really think about right now, as he’s flopped on his belly smiling.

Mary and Joseph take their place in the nativity scene. There’s a shortage of boys so they’re both girls. The girl who plays Joseph is maybe in the fifth grade, with long brown hair and a stern nose. She looks ready to defend her family, peacefully. The girl who plays Mary, I’ve never seen her before the practices, and I never end up seeing her again, after tonight. She sits serene as a queen, a queen who wants social justice for all. Her face is patient and kind, and she has a calm like I can only hope for one day.

I stand up and I hug Margaret to me, and I walk up the steps, and the people watching – there’s a, not a gasp, but like a gasp, like a loud murmur, not because it’s Margaret, but because they didn’t know Jesus was going to be a real baby this year, and they didn’t know where the baby was going to come from. They didn’t know the baby Jesus was right there, waiting in the first pew, one of them.

I look at Mary, like I have to look at her one last time to make sure I can trust her with my baby. She smiles like the Mona Lisa and holds out her arms. I set Margaret in her arms and she turns and looks out at the congregation. Her smile, too, is understated.

I can’t remember the rest of the play. My entire family was out there in it – sheep, shepherds, Saviours.

I remember this. After the pageant was Communion. I’d had my bread and wine and was sitting again with Margaret, closest to the aisle. The rest of the church was filing past, waiting for their turn at the altar. And Margaret wanted to stand up, her feet pushed into my thighs. I held on to her, and as people passed, she raised her hand to them, open palm, just out in front of them, like the tiniest little Pope. And people saw her, and they paused, each one, in front of her, like she was a station of the cross. My hipster friend Jacob said quietly, “I think she just blessed me.” And they all had this look on their faces. Some were almost teary-eyed. Like they were seeing something they’d always wanted to see and didn’t think they would. Something they had deep inside them, but they’d never seen in on the outside. And Margaret just kept blessing them all, and I held her up, and I thought, something is happening. It’s hard to explain. And it was all so new to me. Back then, it was so new.


Merry Christmas all you babies out there having your first holiday (or other holiday, sorry I’m not trying to be Christmas-centric) – girl babies, boy babies, babies who are super cute and were born with a diagnosis of a Down syndrome. Swaddle you all and bring you gifts. We celebrate you. It’s all about love.