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.

Beliefs

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.”

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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.

My Husband’s New Wife

My husband’s new wife is a peach. I really like her. My husband is the happiest he’s ever been.

She’s the kind of woman I always thought I’d be.

She and my husband have so much in common. If they don’t have it in common, she gets it in common. If he describes the cool way the circuit-amp-breaker-plugs were wired in our new living room she says Wow that’s fascinating and doesn’t excuse herself to watch Downton Abbey.

My husband’s new wife likes war movies. She thinks chick flicks are lame. She doesn’t watch a romance and then sigh and glare at her husband and think not once have you stood in my yard with a boombox over your head blaring an 80s love song.

Even if she did like chick flicks she wouldn’t get annoyed by the term chick flicks and say then why we don’t call war movies dick flicks and my husband wouldn’t have to sigh and think Lord not this again.

My husband’s new wife thinks bacon is a food group. She does not order pizza with zucchini on it. She doesn’t know any recipes for garbanzos.

She never gets PMS. She’s never happy and sad at the same time and all weeping into the salad spinner, not knowing why she’s crying except that love is huge and pain is huge and when it all gets too big it doesn’t fit in her heart and has to come leaking out as tears.

My husband’s new wife owns makeup. And she wears it. She can shade and contour and conceal.

When she’s back from a run she changes out of the sweaty running clothes.

My husband’s new wife says thank you when he unloads the dishwasher,

thank you when he folds laundry,

thank you when he replaces the bar of soap which never happens.

She doesn’t care if he doesn’t change the toilet paper. She just changes it!

If he leaves a wet towel on the bed she just picks it up! Or lets it sit there and grow mushrooms! They eat them for dinner! Wrapped in bacon!

My husband’s new wife thinks, he does so much. He’s a good dad. He is give give give. Why bug him about stupid stuff?

Before she married my husband she dated some real losers. She remembers walking through the city alone, boot-steps on concrete. She will never forget the miracle of waking up to see this incredible person next to her. By what miracle is he here? Sharing life with her. Step by blessed step.

You don’t find this every day.

My husband’s new wife fills his car when it’s on empty. Week after week. She doesn’t say do you ever fill this thing??

She doesn’t say ever. She doesn’t say you always, you never.

When his alarm goes off at 5:00…5:07…5:14…she doesn’t knee him in the back.

She doesn’t save him the last chocolate chip cookie and then resent him for actually eating it.

She isn’t kind and generous and then needing neon signs to point out how kind and generous she is. She’s not writing the invisible book of her loveliness.

When my husband decides he’s going Paleo two days before Thanksgiving his new wife doesn’t think, oh my fucking hell. She orders a cookbook. She makes a pecan pie out of cauliflower.

My husband’s new wife doesn’t talk to him when he’s on his phone. She doesn’t frown and convey her silent judgement that he’s wasting time with this tiny screen that he could be spending talking to her.

When his new wife wants to talk, she waits until he’s ready. She can wait forever.

She’s not younger but she seems younger. She has endless energy. She thrives on tasks. She organizes coat drives. She shapes policy. She has a career she never quit, thinking it was more important to make homemade diapers out of organic cotton that she grew in her backyard. She didn’t stumble out of the preschool years, squinting into the light going, where the hell am I?

She is supremely confident and there’s nothing sexier. Your husband’s old wife would feel confident but then worried that her confidence made her arrogant. She lopped herself. She gave when she had nothing to give. She accepted emptiness.

My husband and his new wife entertain every weekend, drink apple martinis by the fire pit. She invites his college buddies, high school buddies, she doesn’t grumble and say how did she get in charge of his friends what is she his mother?

He stops working on weekends. He stops because she calmly and clearly and showing gratitude for his contributions to the household explains that this is not working for her. She asks for what she needs. And because she can do this, he hears her.

My husband’s new wife plans romantic trips to Colorado or maybe Zurich. It is assumed that time together is more important than elite swim camps for the kids.

My husband’s new wife loves our children, to pieces, but she does not let them dictate their lives. They sleep in their own beds. Their needs are not more important than hers. Or their needs as a couple. How could there be anything more important, she says, than the well-being of the people responsible for the children’s well-being?

It makes so much sense when she says it.

My husband’s new wife feeds on chaos. It fuels her. She likes when two kids and a husband talk to her all at the same time while the phone’s ringing and the timer’s going off and possibly in the oven is a small fire. Her hair doesn’t pop out on end like she’s been electrocuted.

My husband’s new wife is everything he wanted, all he dreamed of. Everything his mother wanted for him, when she gazed at him in his crib, wondering who was out there for her beautiful baby boy. My husband is happier than he’s ever been. He wonders why sometimes it seemed so hard.

Not any more, dear husband. Your new wife is coming.

2015.

It’s still a new year. It’s still possible.

I am your old wife.

And your new wife.

I’m really going to like her.

I’m going to like them both.

Why You Will Never Be Happy

When you have a baby who has Down syndrome you find out that almost everyone in the world has a cousin with Down syndrome and they all work at a grocery store.

And they’re all incredibly happy.

You know, I hope most people are happy. I hope all kids are happy. And babies.

Are people as a species so unhappy that my now five-year old daughter reading library books on the couch stands out in such contrast?

There are many ways I would describe my daughter – brigadier general comes to mind – but I wouldn’t describe either of my kids as happy. Just like I wouldn’t describe them as people who breathe. Or sleep. Or clip their fingernails. There are just a lot of words I would use first.

I did have a new acquaintance tell me that my daughter was very loving. I looked around to see if we meant the same girl. It was indeed the one dog-piling her big brother. Thank you, I said.

It seems like we all want to be happy. Pills, teas, lavender lotions. Link after book after glossy magazine:

Are You Happy?
Five Signs That You Could Be Happier
Twenty Simple Ways To Get Happy

In the Parenting section is The Happiest Kid (Toddler, Child and I believe Teenager) on the Block.

As a special needs parent, I’m not sure happy is all you’re going for. I’m guessing you want more.

No one watches a nine-year old in a chess tournament and says, “She’s so happy!” The Happiest Child finishes soccer practice, piano lessons and French homework. Then she does her happy flashcards.

Maybe happy is what we work on when the checklist is done.

If you have Down syndrome, no one thinks you have a checklist. You float around finding ways to keep busy while the rest of us have real lives. And the reason we don’t find this a waste is because we tell ourselves people with Down syndrome are: happy.

Do we really want to give away “happy” to a sub-group? Remember the Native Americans who gave away Manhattan. We might want it back. Think it through.

Sometimes I dream that my daughter with Down syndrome will actually become a giant pill. A crank in a beret. I was secretly proud the day she dressed herself in all-black for preschool, Johnny Cash-style.

Do we typicals want to be happy, but only after we’ve earned our PhD’s? How do we want to be described in the Christmas newsletter? “Justin is so happy. He is forty-five years old. And just so darn happy.”

Isn’t it weird how happy can sound pathetic? When it’s on the cover of Cosmo it doesn’t sound pathetic. It sounds hot.

How will we get the right kind of happy? I want the good happy. The best happy. I want the happy that gets me my own parking spot.

Deep down, do any of us ever think happy is actually kind of optional? The icing on our achievement cake? If you had a choice between massive wealth or simple happiness, would any of us hedge our bets and go for the dough? I mean, how bad could it be?

When I Googled “Am I happy?” there were 1,470,000 results.

When I Googled “I am happy” in the declarative-  there were only 1,120,000 results – 350 million fewer. And most of them were the Pharell Williams song.

So I took the Oprah “Are You Happy Quiz?” to see if I was happy. It turns out I am. I was kind of surprised. The dark clouds, the Pacific Northwest rain, after two weeks it already seems endless.

I scored between 52-70. This placed me in the category “Your smile is your guide.” I’m happy.

Then it was my five year-old daughter’s turn. Since she has Down syndrome, I thought I should test this once and for all.

I found out that:

Yes, she feels better when she gives unconditionally to others.
No, she does not dwell on people who disappoint her.
No, she did not feel her life would truly begin only when the right circumstances came along.

She does not think giving a present is better than getting one.

She. should. get. what. she. wants.

Not getting what she wants does not help her develop as a person.

Life is good and she appreciates what she has.

She has no trouble making her health a priority.

All totaled, she only scored between a 30-49. This puts her in the category of “Needs to Look on the Bright Side More Often.” She’s “not miserable”.

But she is not happy.

She hopped off the chair to finish her puzzle. Red barn, spotted cows. A snack bowl of snap peas.

I didn’t have the heart to tell her.

 

Is Gratitude a Sham?

Lately I’ve been having trouble with gratitude. Sometimes it feels like a sham. Like another thing people do to make themselves feel better, like go to church and eat organic food.
(I go to church and eat organic food.)

How could there be anything wrong with being thankful for all you have? Keeping a gratitude journal? Posting the list on Facebook and challenging others to do the same?Who gets skeptical about “feeling blessed”?

And I do feel blessed. I have so much to be grateful for. My life has included cancer surgery, radiation, divorce. It’s not like I’m sitting here with my golden ticket saying, sucks to be you, because at many points in my life it has sucked to be me. When I wake up and I’m healthy, trust me, I’m grateful. When my kids wake up and they’re healthy, I am grateful. Like you have no idea. Thank God.

But sometimes my “gratitude” feels a little too much like “whew”.

Today, at least, we were safe.

And then I feel guilty. Grateful but guilty.

My husband is a police officer. He once made a traffic stop when he was working the night shift. It was two or three in the morning, the couple – the parents – were on their way to drop off a drug delivery. Their toddler was in the back seat buckled into a car seat. Across the tray of the car seat the parents had scattered a bag of Skittles for him to eat. At three am. On the way. To the drug drop.

What is that dear child of God grateful for today?

Sometimes gratitude seems like another way to talk about luck.

Sometimes gratitude seems like heads when you called heads. Tails when you called tails. Heads my kids get Bob’s Red Mill Organic Steel Cut Oats. Tails your kid gets red-Skittled saliva dripping down his chin.

Not only that, but it’s healthy for us to be grateful. To boot! Like a supplement. If you have food, water and shelter you will live longer. And if you’re grateful for those things you will live even longer. It’s an upward spiral.

Something about this seems convenient.

I drew a long straw today. Who knows about tomorrow. I better keep being grateful. It’s worked so far. Lucky socks. Rabbits feet. Thank you God. I really like the stuff you brought today. See me being grateful. Do you see me, God? Wow, what a servant. Makes you want to keep it coming, huh?

While I’m ostensibly a Christian I’m not a very good one and if I’m honest I have to admit that I would thank ANYONE if it kept my husband and children safe and healthy. False gods? Of course I worship false gods, I worship New Seasons, I worship flax seed smoothies, I worship Oprah and her columnists, I worship Hanna Andersson long johns, I worship my emergency preparedness kit in the basement, for a time I appeared to worship Thomas the Tank Engine, believing that collecting the entire line of trains would keep my three-year old encircled in an oval track of safety/happiness/contentment. A rosary of steam engines.

There are children in India who live on mountains of trash. I do not want to live on a mountain of trash. I do not want my children to live on a mountain of trash. I promise you if the Flemings end up living on a mountain of trash that I will not find one single thing to be grateful for and if you tell me to write in a daily gratitude journal I’m going to tell you to fuck off. Fuck off you happy blessed person. Fuck off and get me off this fucking mountain of trash.

Tails.

My son’s word since he started first grade has been random. A random kid at school, a random Lego guy, for a snack he asks for a “random” blueberry muffin. Random: not part of a pattern. Unpredictable. Without cause.

Babies learn cause-effect. You drop the rattle. I pick it up.  You cry. I pick you up. As grownups, we still see the effects. Do we ever stop looking for causes? Do we ever stop looking for the big cosmic mama? Do we think we keep getting the good life because we are thankful for it? Are we scared, possibly terrified of what can and does happen in this world, and have to try something?

My greatest fear is that I will get cancer again and die and leave my babies alone in this world without a mother. My son loves me “so much it makes the moon look like the tip of a marker pen.” My daughter has Down syndrome. I believe in her more than anyone in the entire world. Who will be her army general without me? What would happen to her life?

I can’t breathe.

If expressing my gratitude keeps our winning streak going, I will do it. I’m missing the whole point I’m sure, but I’ll do it. On with gratitude. On with thanks! I would thank God, goddesses, Life, Creators, or a sequined skunk on meth if it could promise me I will get to finish raising my children.

My seven-year old said something to me the other day. He said, “One thing I notice, Mom, is that you say thank you to people a lot of times they don’t say you’re welcome back.” I knew what he meant. You’re welcome gets dropped.

Maybe that’s my problem. I’m dragging on the you’re welcomes. Maybe thank you is like a hot potato. Maybe by the time you say thanks you should have passed the thing on that you’re saying thank you for.

Wake up in a warm house, say thanks, get dressed and help someone else find a house. Wake up healthy, say thanks, and drive off to help someone who’s not healthy.

Say your “thank you” but by the -ou” part you should be out the door.

Maybe thank you is too hot to hold. Maybe that’s my trouble with gratitude: my blessings are burning my hands.

Maybe, oh maybe, that’s why sometimes it hurts.

From PO to LO: Is There Life After Portland?

Link

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:

“Oh.”

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

conformist

homogenous

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.