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.

My Personal Confidence is Leaking

I think it’s safe to say I’ve never scared: anyone.

Five foot five. Birkenstocks with socks. My wrists have the circumference of an Oreo cookie.

Not scary.

Or am I?

It’s a quiet moment in the restroom of a charming professional building in Portland, Oregon. Flowered wallpaper and cozy, golden sconces.

Then I turn my head. The alarm sounds.

PLEASE DISPOSE OF FEMININE PRODUCTS IN THE RECEPTACLE PROVIDED!!!!!(The bold, all caps, and garden trail of exclamation points are not mine.)

I’ve seen these signs all my life. Haven’t you? I see them so much I don’t see them. They blend into the woodwork.

And if you haven’t seen one of these signs, they’re not talking about “feminine” products like tiaras and toenail polish. They don’t mean glitter.

This is what those signs mean. They mean blood comes out of your body and, unless you’ve been shot, that is disgusting. Any items you use to deal with this blood are disgusting. Before you use them, they are embarrassing. After you use them, they’re embarrassing and disgusting.

No one wants women to be disgusting. Not when we need them to be soft and pretty and ready to be a helpmate. Blood ruins the illusion. Blood makes women people.

Please! Our pipes are old. Nothing down the toilet but toilet paper!!!

Landlords, maintenance staff, wastewater treatment facilities – I wish you no harm. That’s why I also don’t flush facial tissues, baby wipes, cotton swabs, diapers, phones, or puppies, which have also been found in community wastewater.

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I’m curious about the “only”. If you put a paper towel in there does the can explode?

I would guess that the number of exclamation points in the sign correlates to how many plumbing backups have been experienced at a given property. Water seeping into the cracks in the linoleum. Cupboards rotted. Floors ripped out. I could really screw this up for someone. Some landlord, building manager, superintendent. Flooded. Broken. A city block brought to its knees.

Again, I wish no one any harm.

It’s just that, to be feared. It’s so new. Women spend so much time being scared. Mostly we’re trying not to get raped. It’s a fear we accept. Girl Power, Title IX, college, Sheryl Sandberg, and…all the while…don’t get raped! Like a lifelong simultaneous hobby.

It’s not like bloody tampons turn the tables, but just for a second I have to hmmmm and raise an eyebrow: Ladies…what have we here?

All those tampons we stash away. Hiding. No one taught you exactly, but we know to hide them. Even clean unwrapped ones. Just their existence is embarrassing. No one wants one to fall out of their hobo bag in a crowded Starbucks. You don’t tuck one behind your ear like a cigarette. (Even though smoking actually is disgusting.)

And it’s funny because the culture splashes women’s bodies everywhere. You’d think we loved women’s bodies. Especially boobs. Boobs in shirts. Boobs in shirts sell hamburgers, pickup trucks, gum. The only thing you can’t do with a boob is feed a person. That’s disgusting.

Women’s bodies. Hot. Sex. Mine.

Bodies doing what they do. Disgusting. Alone. Yours.

The woman on the cover of Sports Illustrated this year pulling her swimsuit bottoms down so far you can see her pubic bones. Does anyone wonder if this person on the cover of the sports magazine plays a sport? Does anyone wonder if the woman in the swimsuit, I don’t know, swims?

What if I told you she was menstruating? What if under that bikini suit she was wearing a bloody tampon. That as you ogle, she is shedding unused uterine lining!!! Would you keep the picture around? Or would you put her away? Until she can be good and sexy again.

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There were teenage boys in the aisle when I took this picture. I was so embarrassed. Luckily, I didn’t exist.

When I started my first office job after college, I learned how to conceal tampons as I walked from my cubicle to the restroom. I tried to make sure I wore pants with pockets when I was menstruating. But when I forgot I would slip the tampon up the sleeve of my suit jacket and sort of hold it against the inside cuff. Just one finger tucked up so that it didn’t look like I was clenching my fist. All the while I strode down the hallway hoping my boss didn’t stop me to chat about the new marketing initiative.

I don’t want to hurt anyone. I don’t want to hurt anyone’s property. But maybe just one teeny time, just for practice, we could stand tall in restrooms across the city, and make people pay attention. Listen up city, I got at a network of weary, slightly anemic menstruating sisters. We’ve all got a jumbo box of Supers from Costco. We can stand here all day and twenty-eight after that.

And not to be a snot, but what do you have, monsieur? A little sign you printed on your printer and hung up with Scotch tape? You got “please” and seventeen exclamation points?

Here’s a secret. You don’t need to make signs.

The women who disobey your sign aren’t going to obey just because you added seven exclamation points instead of three.

And the women who wouldn’t flush a tampon down your creaky rusty stupid pipes because that would cause trouble and trouble isn’t nice —those women will wrap a used tampon in ten yards of toilet paper to try to un-disgust it before contorting themselves to reach the tiny feminine garbage can six feet away from where they sit with their pants down around their ankles.

And I would just like to suggest here in what I’m sure shows only my bitterness and lack of maturity but NO MAN WOULD DO THIS. A friend said, you know how they have those new toilets – flush up for pee and down for poop. She said a man would have another button for flush sideways for tampons. Flush diagonal for maxi pads.

You know what else clogs toilets? Giant poops. Does the men’s room have signs:

PLEASE GENTLEMEN DO NOT FLUSH YOUR OVER-SIZED POOPS!!!!!

Like the airlines with the carry-on luggage. “If your bowel movement cannot fit in this box, please see an agent.”

And I’m not trying to get all over this but men are disgusting. They blow snot out their nose and it lands on the sidewalk. They hack up huge globs and hurk them out the car window. In front of other people. They leave the seat up and don’t even notice what is on the seat – grime and curly hairs and coagulated pee.

The man staring into his laptop, right next to me in the coffee shop, just sneezed a juice bomb into his bare hands and wiped it on his pant leg. In full view. Smiling before, smiling after.

His personal confidence.

I would flush for it.

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.

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.

How to Lie to Yourself and Others

Sometimes when I say yes, I’m lying.

1. What I want to say to my children’s school is:
“No, I don’t want to help with the five-year strategic plan task force but I feel obligated because I don’t work and because I want to be an involved parent so it reflects well on my kids.”

2. What I want to say to the old friend I run into in the Costco cereal aisle is, “No, we shouldn’t get together. I’m glad to catch up and that no harm has come to you and I’m a teensy bit surprised you’re still with the man you always called a bastard at playgroup and I will write down your email on a dry cleaning receipt but I will never contact you because I never really liked you that much.”

I never say this.

And here are some more things. Not lies, but living them feels like lies. Because it turns out:

1. I am not all that maternal.

I thought having children made you maternal. That the hormones would wash over me, coat me in endless sacrifice. Can’t you picture it? Like Ma making jonnycakes and fighting the blackbirds off the corn, Mary Bailey tending to sick Zuzu, Sally Field and Forrest. I realize these people are fictional. But I know real moms like this too. Okay, two. One. But I do know one who has a perpetually full and giving heart and I don’t think it’s just curated for Facebook. I do not have this. I don’t. I get tired. My lap gets crowded. I have limits. The hormones did nothing to bump this up.

2. I feel a teeny bit gypped.

Was this a trade? Because sometimes I don’t see what I got. I know what I’ve lost. I want my legs back, without the bumpy varicose veins. I want my brain cells, I want to finish crosswords again. Even the Saturday ones that are hard. I’d settle for Thursday. I want my work clothes. I want things you have to dry clean and the time to drive to the dry cleaners. I want my breasts back. I really, really, really miss them. These wet balloons resting on my ribcage? I don’t know you.

I want my edge back. My snarl. I used to go months without caring about people. Motherhood ruins you for edge. It robs your indifference. You have to walk around, your heart open and exposed. Do you know the exhaustion of giving a crap about people? It’s unbearable. And what did I trade for this? Fear and anxiety, exhaustion, impaired thinking, humility and vulnerability, empathy and real feeling, love without end. The chance to feel the real deal. The really real deal. I have never been so tired in my life.

And I would never go back.

Honest.