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.


Celebrities: We’re Just Like You

Celebrities. We need gas. We need groceries. Our kids want to go to the park. We push them on the swings. Sure there are some divas, but a lot of celebrities are pretty down to earth. And it’s the same for families with Down syndrome.

Celebrities. And Down syndrome. We’re just like you.

We’re in line at Starbucks. You see us. We see you see us. We see the stare that lasts a half second too long. You look away. But you’ll look again. You have to. You have to be sure of what you’re seeing. Something at once familiar and new.

Wait? Is that…?

Celebrities. And Down syndrome. It’s hard not to look.

Some of you want to talk. We have something in common and you will tell us what it is. The checker at Fred Meyer lights up to see my daughter. One look at her uncorks his memories of working with adults with disabilities. It was amazing. It changed his life. A transformation. All these years he’s never forgotten. He shakes his head, remembering.

But we only came for milk.

We didn’t tie our shoes this morning and say, okay family, let’s go out there and show them what a family with a disability is. We don’t wear badges, we’re not official representatives. We have school. We have work. We have seven errands on our to-do list and if we stop and Have An Experience with every person we encounter we’re not going to make the dry cleaners by five.

Celebrities. And Down syndrome. Sometimes we just want to walk down the street, like a regular family. Sometimes we want to blend in. But you can’t put the cork back in the bottle.

Celebrities. And Down syndrome. You think we remember you. From a concert, a train trip, the taqueria. From my daughter’s school. Four hundred children, of whom 300 and their parents greet her by name, while I look blankly at their child, hoping to return the greeting. I have no idea. I’m so sorry people. What are we calling you now? Regular people? Civilians? Typicals? I have to tell you a secret. All you non-disableds? You all look the same. I can’t tell one blonde-haired girl in leggings from another.

What’s the alternative? People could ignore us? Turn away in horror? We could go back to segregating people, locking us in categories—physical, social, economic. Adjectives for all. Adjectives that unlock some doors, double-bolt others.

This all sounds really ungrateful. Would it kill me to listen to some lady at the MAX stop talk about her niece while her dog sniffs my shoe – is that my re-payment for having a child who wasn’t whisked away at birth? This might sound selfish and entitled but being grateful that my daughter lives her life in full view of society feels a little like being grateful I was never sold as a child bride. Um, sure, but in Portland, Oregon, kind of removed.

Undoubtedly someday, too soon, I will miss people talking to us. Stopping me to tell me how adorable my daughter it. We hear it all the time. The person at Powell’s has no idea we just heard this in World Cup and before that in the Rose Room and before that on the streetcar.

What a luxury to complain about someone complimenting your child. First world problem? First and a half? And it will seem either a paradox or disingenuous when I say that I appreciate every comment. I know that doesn’t make sense. Parents of other kinds of children assuredly hear familiar comments that fit their child’s “category”–twins for example. Parents in general hear many of the same comments over and over. “Got your hands full,” is a popular one.

Given that children with disabilities were until embarrassingly recently hidden away, blotted from existence, being noticed in public perhaps has a special resonance. And I don’t blame the public. The public hasn’t had much practice. And the fact that so many people aren’t sure what to say and reach out anyway carries special weight.

So while this will seem hypocritical, I thank people from the bottom of my heart for trying to connect with us. Maybe they’re trying to make up for the past. Maybe they are acknowledging the recent injustice. Maybe they see the little social triumph that is my daughter, in her pink flowered flip-flops stirring her hot chocolate to cool it down. And if they want to offer a little thumbs up? What crank could have a problem with that?

Not to mention, my daughter, is pretty adorable. But she’s six. Heading toward seven. One day 10 and 11, the awkward years. She’s going to be an adult. People can’t call her adorable when she’s forty. She’s going to need to be noticed for her other characteristics. She is also kind, thoughtful, silly as a snail sandwich, and as I tell her multiple times a day, a hard worker, which is the understatement of all time.

Celebrities. And Down syndrome. It’s good to have a fallback, after the looks fade. One day the smiles will dry up, the comments, the conversations, the adorables. Just like they say you’ll eventually miss every aspect of parenting you currently struggle with, I will hate myself for complaining, for not realizing it could be so much worse.

What if my daughter grows up and no one notices her? What if someone gives her a hard time, makes a rude comment, and no one looks, no one sees. And I’m nowhere. No one who loves her is anywhere. And the smilers? Well, lady, you told us not to. You told us to leave her alone and let her live. We’re just treating her like we treat everyone else. We’re busy and we’re tired and we don’t have time to notice anyone. So welcome to the club.

Celebrities. And Down syndrome. It’s a tough game. You catch us in isolated moments. Sweet moments. Awkward moments. Unglamorous moments. Maybe you think the moment stands in for the whole story. But even we don’t know the whole story. We are stumbling, struggling, piecing it together, while the opinions, the trolls, come quick and furious, darts at a dartboard.

Celebrities. And Down syndrome. Images in the public’s eye. Skin deep. One-dimensional.

Take a look.

A deeper look.

From PO to LO: Is There Life After Portland?


Is there life after Portland, home of the weird? This week we move to Lake Oswego, Oregon, home of the…?

Stereotypes work both ways. In many ways, Portland’s hip weird alternative reputation is just another stereotype. I mean, I live here, I seemingly fit in. And I can attest on a stack of compost that I am nowhere close to hip.

I know this, I always felt at home in Portland. Over the years I wandered, searching for home in New York, Boston, Baltimore, Washington, D.C. Waiting for home to hit me in the face. When I moved back from the East Coast for the third and final time, and I came up over the Marquam Bridge from the airport, where Tom McCall Park and the waterfront first rise into view, it was like the hole inside me was healed. And I thought, maybe home doesn’t hit you in the face. Maybe home hugs you in the gut.

The forests, the Willamette, the bridges, Mount Hood. The glowing articles in the New York Times talk about Portland’s cupcakes and whiskey bars. It’s true, there are a lot of nice blocks with a lot of nice places. But when you live your life here, you know where Portland is. To see Portland, you look up and around. To see Portland, you see the clouds, ten feet over your head. And they remind you that here, things are close to you.

So now the moving truck heads ten miles south. When we tell our Portland friends we found a house they are excited! “Where is it?” Expecting the old Portland neighborhoods – Laurelhurst, Sellwood, Eastmoreland. We say Lake Oswego and they say:


This past year alone we have met families from Chicago, New York, Ohio, Michigan, another from New York, another from Michigan, southern California, Arizona, central California, another from central California, and more I’m forgetting. Portland has become a meet-up spot. These people didn’t pack up their lives and move two thousand miles to come to an off-shoot, a shadow, a little sister of Portland. They came for what was promised in the ad.

To Portlanders, I believe, Lake Oswego is:

a bunch of rich white people



without culture

without sidewalks

a foodie wasteland

Or maybe these are my own fears.

I know this, crime is lower, schools are smaller, and you can hear birds. It is my feeling that I will be able to let my children play in our front yard. I also know this: in Portland I almost never ride my bike, I repeatedly drive the car when I could have walked, and I’ve never been to organic ocean-sustainable Bamboo Sushi but buy the eight pack in the plastic tray from Trader Joe’s. (Which I drive to.)

Maybe Portland was the possibility. That I might one day put on an ironic cowboy hat and direct an art film in my driveway.  That I might tear up the front lawn and grow a one-loaf-a-summer patch of wheat. That I one day might loosen the shackles that weld me to safety and conformity. That I might be everything I am free to be. Marlo Thomas. There is a land that I see, take my hand and we’ll run, it’s right out the window. In Portland the best was yet to come.

In Portland you never grow old.

In ways then, our move to the suburbs feels like a door closing. That we are going there to build the final nest, our children’s base camp as they age and launch into adulthood. This move is for them, not us.

Moving to Lake Oswego feels like getting married. Not that I was a crazy single person -but the options were there. In the suburbs it seems there is an expectation, a commitment to the stable. There may be nights spent downtown in a hotel after a night of turtle soup and Afghani film, but I will never again live here. I will never be: from Portland, for seventeen years the coolest thing, by far, that could be said about me. I have no idea why at this age I still give any credence to anything as shallow and immature as the word “cool”.

I tried to make it work. Raising kids in the city. The diversity, as we say. Sure everyone was actually white like us, but there were different KINDS of white people. There were white people on homemade unicycles, white people with beards down to their high tops, there were white people dressed up as kitty cats. What better place to teach the children that there is a place for you here in this world, whatever you are.

It got harder to explain the man who stormed down our sidewalk as we unlocked our front door. “DON’T GO IN THERE! DON’T YOU DARE GO IN THERE!!!” he shouted at us, high on meth.

And now that my son can read, free-speech redolent Portland offers a highway lined with darkened parlors full of naked dancers. There’s not a route to the dentist that doesn’t pass a strip joint. I did okay explaining “Lucky Devil”. It got harder to explain Hot Hot Hot Girls. And why they were so sweaty.

I’m scared to move to Lake Oswego. I’m excited to move to Lake Oswego. The truck comes Saturday. Have we hidden our treasures in faceless cardboard? How will we arrange this new life? Will there be a place for everything we’re bringing? What will be missing?

The road goes south. In geologic time, it’s a blip. In the context of the globe and the millions of people and what people struggle through, this is nothing. We’re heading down the road, to see what we find there.

Down Syndrome Goes on a Field Trip

The school days are the hardest. For me as a mother of a daughter with Down syndrome, that’s where the pressure is. If she fusses and whines at church – all is forgiven. In the grocery store, it’s practically expected of young children. At Thanksgiving, the relatives agree she is either a) tired b) coming down with something or c) full.

School. School is where it’s all being tested. School is make or break. Will she make it? Can my four year old daughter with Down syndrome cut it in the real world?

Most days, maybe all of them, I would say she can. She is so close to where other kids are. Academically, emotionally, socially. But today – field trip day – I start to doubt. For a moment, I think I’ve had my head in the sand. For a moment, I think, maybe it’s time to face facts. For a moment I think maybe I’ve been so busy believing, that maybe I couldn’t see what really is.

Today – part of a six week investigation on chocolate – voted on by the students, the class is visiting a local chocolate factory. As usual with my kids (both kids) I prepare my daughter for what’s going to happen. I will drop her off in the morning at school, then come back in an hour to drive her and a friend to the chocolate factory. She gets it. When I leave she says she will see me later. Hug. Kiss. Mwah.

In an hour I return with the other chaperones. There’s a happy educational din of children putting on jackets, clutching their research clipboards, parents jangling car keys, the teachers giving instructions.

All I hear is my daughter.

In their efficiency, the teachers made a color-coded string necklace for each child with their names and cell numbers. Each child is wearing one, the laminated safety information dangling at their tummies.

My daughter is not whining exactly. Not crying. Not yelling. It’s like the sound if a small person, perhaps reduced by a shrink-ray, screamed “no” into a pillow. It’s a sound that makes her classmates stare. It makes their parents stare, until they remember to look away. It makes even her lovely, open-minded teachers glance at me. I imagine their look saying: “You got anything?”

Here’s what I’ve got. I’ve got thirty people waiting for me to figure this out so we can go. I crouch down and put my face inches from hers and say in a low voice, low like Darth Vader, you have to wear it. Willing the depth of my voice to make her put it on. Summoning the power of parenting from a bygone era when children obeyed and that was okay. She said, no I don’t like the necklace. Her articulation is off the charts! Stay focused. I say if you want to go on the field trip you have to wear it. In five seconds I’ve bypassed three volumes of creative parenting and have landed at the chapter on Threats.

She says no. She says I don’t want to.

I look around again. All the children are wearing the necklaces. All the children have shiny shoes, freshly pressed trousers and are fluent in French, German, and one of those lost languages that only thirteen people left in the world can speak.

And my heart rips itself in half.

In general, I want her to say no, loud and clear, for reasons I can barely acknowledge. For four years, almost five, we have taught her that it’s her body and she makes the decisions about her body and what touches it. It’s her mouth and she decides what goes in it. I have sat holding the toothbrush until my forearm hurts waiting for her to open her mouth, on her own. Later I will show her what to do if someone tries to make a decision about her body. I will show her where to aim and how hard. Her ability to say no is an answered prayer. Already I see that this girl speaks up. She stands up for herself. Someday I won’t be with her.

But from the little I see about the public education system, where my daughter is heading, I’m not sure they appreciate the girl who sticks to her guns no matter how many levels of educational arrows are being slung at her. There was a Far Side cartoon years ago with a picture of thousands of indistinguishable penguins. A mass, a mob, maybe even a classroom of thirty-four? And one little guy in the back jumps up and sings, “I gotta be me, I just gotta be me.” It’s a great cartoon, it speaks to a lot of people. But in public school, that little penguin is getting an IEP.

So yes, I’m a little torn about the necklace. I can see where it’s coming from. But how to explain to the hallway full of parents, children and educators that honestly deep down, while I’m trying to be a team player here, while my whole reason for being is for her to be part of the group, I don’t really want her to have to wear a necklace if she doesn’t want to. And the reason I am deep down secretly proud that she won’t put it on is because I’m afraid it will lead one day to a fellow high school student inviting her to a house after school to be used or ridiculed. To someone on her front porch trying to con her into giving away her VISA number. Is it only the truly paranoid mother who could make the leap from being forced to wear something around her neck to sexual assault?

But then what is my daughter thinking? I’ve already softly growled that if she doesn’t put this $*#(@ necklace on she’s off the field trip. What is she thinking? Mom’s inconsistent. She cares too much what people are thinking. Mom’s stressed out and it makes her make poor parenting choices.

She would be right on all counts.

We agree that she will hold the necklace in her hand. I think this is a small victory. (Why does only a “victory” make me feel like a competent parent?)

The chocolate factory gives us a warm welcome. Factory is not the right word. It’s a family-owned, chocolate-making boutique close to residential neighborhoods and parks. Incredibly, one of the owners names is Charlie. We line up outside. It’s sunny, not too warm. The scent is chocolatey and woodsy.

My daughter is lined up with her classmates. She’s holding her research clipboard. Her research partner, a friend and a really neat girl, is next to her. They came up with a research question together. The kids are so good. They’re all on their best behavior. A lady from the chocolate factory comes out. She is so glad to see us. She is so glad we came. Welcome welcome.

I look at my daughter, listening and smiling. I’m in love with education. With learning. With trying and failing. I’m so proud of her. We can do this.

The lady holds out a mass of something pale brown and kind of fluffy. She peels off something beige and soft, soft as a fluffy chick. She holds it out. There’s just one more thing, she says, before we go in.

Everyone will need to wear a hair net.