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.

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.

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.

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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.