Not long ago I had an experience that made me rethink what I know and how I communicate about Down syndrome.

I was having a telephone discussion with someone whom I value and respect. We were talking about providing resources and lessons via my day job with Learning to Give, and I mentioned wanting to make sure what we were planning was inclusive and open to a diverse audience. The person on the call agreed and we began chatting about why inclusion is important.

To be frank, some of the parts of this conversation have been rewritten because I wasn’t recording the conversation or intending to remember it word for word. So, this is my recollection, but the gist remains:

“I think it is really important to have full inclusion,” she said. “When I was working oversees, I was in a classroom where three young boys had Down syndrome. They were fully included. They got along with everyone and we could all see how much being with their peers was helping them learn and grow. It was like there was nothing wrong with them.”

Did you catch that? The closing remark? “It was like there was nothing wrong with them.” It hit me like I just finished sprinting a lap around the track. I felt winded. My hands began to shake. Instantly, my brain was working overtime to try to figure out what to say.

At first I couldn’t say anything. I let the conversation continue on as if nothing cracked a hole in my atmosphere. But after a few minutes I managed to get my thoughts in order, and before the conversation switched to a new topic, I advocated.

“Wait, I want to go back to something you just said,” I ventured. “I don’t think you meant anything by it at all, but there’s nothing wrong with a person who has Down syndrome or any other exceptional need. I just want to be sure that we’re on the same page about that.”

We all say things and do things based on what we know and what we’re socialized to think. In some ways, our thoughts are “stuck in the past” and so ingrained in us that we don’t realize that what we are saying, or rather, how we say something can be harmful, to both our understanding and to human progress.

Our worlds are socially constructed, or the development of our understandings of the world form through the basis of shared assumptions about our realities. In this theory of understanding, development is socially situated and knowledge is constructed through interaction with others. We are a product of our environments plus our willingness to step outside of our comfort zones to experience new surroundings.

How we talk about things and how the world talks about things are not always the same. Big D Discourse is the written or spoken communication on a large scale; the way the world communicates about a topic. Little d discourse is the written or spoken communication in our own communities and circles.  Discourse, discourse and social contructionism are concepts I learned in graduate school and I see played out on a daily basis.

For me, the above conversation became a moment for me to consider how an innocent comparison in conversation can be harmful to the Discourse surrounding a diagnosis like Down syndrome.

The Discourse about Down syndrome is changing for the better, but there is still work to do, just as the above conversation displays. Even when we are true advocates for a cause, when we see value in all human life, when we work together to provide opportunity and support, we likely unintentionally fall back into the rhythms we grew up with. We must be active in our advocacy and by that I mean we need to be aware of our own faults and bias.

But simply being aware isn’t enough. With awareness comes the responsibility to do the hard work to train ourselves, our minds and our actions, so that we are able to fully immerse ourselves in new rhythms. It’s about learning from the past so that we can progress toward a more inclusive, whole, and purposeful future.

I want my son to know he is loved, valued, and able. There’s nothing “wrong” with him. He is exactly who he is meant to be.

Hills and mountains rise in the distance.

Peaks may reach above the clouds.

Swirls of wind and gusts of air.

Greenery growing like wisps of hair.

Stretching toward the sky unknown.

Rooted to the ground that’s home.

Water flowing down, down, down.

Paths of motion toward the ground.

Little rivers full of hope.

Up above and far below.

Choices flowing with each slope.

Things known and things to know.

This or that, then or now.

I flow and fall in a careful current.

I select the path I explore.

I step in and I step out.

The sky becomes the floor.

A different view where water flows.

What then?

Part I and Part II

In 6th grade I joined the basketball team. The girls’ team. I couldn’t play because I was a grade too young. So I acted as the team “manager” and participated in every practice and attended every game.

Martha was a cheerleader. She enjoyed the chants, the curling of her hair, the sparkles and the rhinestones. I liked glitter, but I also liked the thrill and challenge of dribbling, shooting, blocking, and running.

That was us. She the “girly-girl” and me the “tom-boy”. Best friends with different interests. But we had one thing in common. We did. And it made us close, so close that we’d tell one another everything and anything. We dreamed together. We cried together. We learned together. Martha knew me.

Martha was loved, and I was tolerated. She was a boy whisperer. At that time she didn’t even notice them, but they noticed her. And I noticed them noticing her.

Forrest was a quiet boy. He was the nicest, kindest, most generous, well behaved boy in our grade. And, Forrest was head over heels in love, or at least “in like” with Martha.

“Sam,” he said one morning before homeroom. “Will you give this to Martha?” It was a note. Martha’s name written on the top folded section with a little lopsided, boy-drawn heart.

“OK,” I said. Forrest nodded and walked passed me into the crowd of students.

“Here,” I said to Martha as I handed over the note. She snatched it from my hand with a smile. She ran her finger over the little heart and looked at me with her eyebrows raised. “Open it,” I said.

I assumed the note would say something like “do you like me, yes or no?” That’s what all of the movie and TV show notes usually said.

With class just about to start, Martha put the note in her trapper keeper. She didn’t open it right away.

I could see myself and how desperate I looked. I’d floated up and away from myself. I wanted to know what Forrest said. I wanted to open that note. I wanted that note to be meant for me. I felt selfish for feeling that way. Martha was my friend. She was my best friend. She still is.

Alas, no notes came my way. Not in sixth grade, not in eighth, and not even during my sophomore year.

Pathetic, right? I cried and cried. My mother told me it was because I was too mature and too pretty for my age. But I could see what she couldn’t. That smirk. That glint in my eyes. That empty soul. I couldn’t be trusted. And the boys, well, they knew that without even realizing how.

Martha and I, we opened the note together under the bleachers by the football field that afternoon just before 4th hour. It was a word find puzzle with clues as to what words Martha might find. And the words, well, they weren’t as wholesome, nice, or gentlemanly as the Forrest we thought we knew. But, does anyone ever turn out to be the person we thought they were?

—

“Shit,” I said as I tripped in the darkness. “Where’s the flashlight?”

“I didn’t bring one this time,” said Martha. We made it to the cemetery in record time. And after chowing down on that Drost’s goodie box, I still had a few mint meltaways to look forward to later on the ride home in the car.

The cemetery is nestled at a junction in the road just outside of town. A bar packed with Friday night karaoke singers, pizza eaters, and lonely drinkers is just across the road. It’s a small cemetery with maybe 200 headstones of mostly families and family members of people who’ve lived here their whole lives. Everyone knows someone who knows someone with a relative up on cemetery hill.

My grandma is buried in the cemetery next to her own parents. Her plot is always neat and clean. A little chicks and hen plant and daisy grow by her side. And she’s under the shade of a large oak tree.

She’s in the main part of the cemetery. There’s a cluster of headstones back beyond the main grounds with only a few headstones to date. Eventually, the yard will be full of ancestors, but for now it is a field of cut grass and open skyline views.

“It’s really dark tonight,” I said to Martha as we made our way out to the open field. “The sky is so clear, look at those stars.” Glancing upward into the darkness, I thought of my grandma. Her eternal resting place just paces away. I smiled into the darkness and gave a quiet nod. Every time we come here, I always send a special thought her way.

“I think I got the full moon wrong on my lunar calendar,” said Martha. “I could have sworn tonight there was going to be an eclipse.”

“A what?”

“An eclipse. You know, where the sun and moon align and a bright silver ring of light flashes out of the sky.”

“Oh. All I see of the moon is that little sliver over there,” I said as a pointed to the north. Or at least, in my head I felt like I was pointing north. Directions and I are not the best of mates.

“Well, I thought we’d see one out here tonight. Forrest thought so too.”

“Where is he anyway? I thought he’d beat us here.”

“Not sure. We’ll just put down the blanket and wait.” We spread out the small sleeping bag and proceeded to sit next to one another. Martha grabbed her cigarette carton and took out a stick. The flash of her lighter made an orange glow over the blanket. A few puffs and the cigarette smoke was wafting in the night breeze. I laid back to look up at the sky above.

“Do you remember when we were kids and we used to play in the snow out in front of my house?” said Martha. “And, after it rained on top of the snow and the snow got a crust, we’d pretend we were digging up crystals?” I did remember. We’d be all bundled up, only our faces showing. Cheeks red and noses running. We’d play in the bushes out front by her flagpole. We’d sit in the evergreens and dig at the ice crystals with our hands. They were so pretty. So pure. Frozen snowflakes, falling and melting together one on top of another, over and over melting and molding into one substantial mass

“I do remember. We were such dorks.”

“I don’t think we were dorks at all,” said Martha. She stubbed out her cigarette and laid down beside me. “We were creative. And, we made due with what we had. We made up our own world and it was glorious.”

“We still kind of do that, you know,” I said. “Make up our own world.” Martha sat up then. She was quiet for a few moments and then she turned her face toward mine.

“This isn’t made up. This is real,” she said. She inched her face a bit closer. “This,” she said as she put her hand on mine, “This is real. This place is real. What we are about to experience, it is real. Everything else is a farce. Everything else we’ve ever known, we’re all just bits of matter floating around, bumping into one another. What’s real for one person is a dream for another. Reality is relative. Reality is only real when we choose to make it so.”

“Hey ladies,” Forrest said as he walked toward us in the dark. “How’d you beat me here? I know I left in plenty of time.” Martha leaned back and turned her head toward the sound of Forrest’s voice.

“Yeah, yeah,” said Martha. “We’ve heard that excuse before.”

“No flashlight for you either?” I asked Forrest.

“Nah. I have eagle eyes you know. And bat-like senses that help me navigate this here cemetery in the dark.”

—

I love the cemetery at night. The crickets, the bats diving for mosquitoes, the glow of the stars. And the stillness. The dead really know how to relax and take it all in. Obviously, they have no choice in the matter, but for me, that sort of quietness is heaven. I’m the most myself in this cemetery. I can see how calm I look. The tension from the game has completely left my body, my shoulders are at ease, and my eyes are alert but content. I look the prettiest here in this space. Surrounded by darkness, death, and silence.

Forrest unfolded a small blanket as he sat down between Martha and me. The soft underbelly of the fabric brushed against my face as it settled down on my lap. The warmth from the blanket against our bodies was almost immediate. It intensified his scent, the smell of vanilla and cinnamon, sweet and bitter, with a hint of espresso. We sat, the three of us, under his blanket and stared off into the dark distance.

The time passed. Slowly at first and then it gained momentum and seemed to speed by like a bullet train.

The darkness enveloped us. We were part of the nothingness of night. Each of us, individual bodies, eyes wide and minds clear. But we combined together as one mass of matter in the open space. My breathing slowed, my pulse doubled-back to match the flowing sap of the surrounding trees. Martha, on the other side of Forrest, was sitting just as still. Forrest rocked back and forth slightly, I couldn’t see it, but I could feel the slight motion, forward back forward back, his arm brushing lightly against mine.

Slowly, a glow appeared through the darkness. A small flicker of light. And then another. And another. In a matter of seconds, the darkness glowed, glimmering and shining in the distance before us.

I saw us there, sitting, the three of us shoulder to shoulder under a blanket in the night. I remained quiet. We all did. Without sound we could hear the light. I noticed each flicker grow in intensity and power. And then, just as quickly is a light appeared, it would fade in the darkness and a new light would emerge brighter and bolder in its place.

A little something written with youngsters in mind. 

Woop there it is! Wiggle, waddle, widdle, woo, with one blue eye and a giant grin, the Wild Woops are back again.

They sing, they dance, they jump, they play. They stay up all night and sleep all day!

Waggle, widdle, waddle, wood, the Wild Woops know just how to lighten the mood.

“You can do it! You’re awesome! You’re amazing! You’re kind!” They’ll say it every day, all day, all the time!

Wiggle, waddle, widdle, woo, the Woops will make a dreamer out of you.

“Think big, think small, think grand, think tall. Your dreams can be anything at all!”

They say it with gusto, they say it with might, the Wild Woops are the kindest, all right.

Waggle, widdle, waddle, woo, Wild Woops inspire in all that they do.

They give, they motivate, they grow, they learn. They volunteer often and donate what they earn.

Wiggle, waddle, widdle, woo, the Wild Woops are made of a little of me and a little of you.

They’re in your heart and in your mind. A voice of support, no matter what kind.

“You’re amazing! You’re funny! You’re smart! You’re wise.” They say it because they mean it, a Wild Woop never lies.

Waggle, widdle, waddle, when, the Wild Woops are love times ten.

They’ll love you when you’re happy and when you’re sad, when you’re scared, or when you’re angry or mad.

They’ll love you through it all because that’s just what they do.

Wiggle, waddle, widdle, woo, the Wild Woops always see the best in you, and I do, too!

I love you with my whole heart.

I love you with my whole brain.

I love you with my whole body.

And, I’ll always love you just the same.

I’ll love you forever more

Every day,

every hour,

every minute,

every second from 1 to 1 trillion 55 billion 13 million 64.

Lotto luck or loss, my love is true.

I love you more and more and more and more and more, because you’re irreplaceably you.

Part I 

We won. It’s just a conference game and it’s early in the season. But a W is a W. I’m the starting kicker on the varsity football team. And I’m the only girl.

As the guys make their way to the locker room to hit up the showers, I walk over to the fence beyond the track to chat. As the crowd files out of the stadium, I see a few familiar faces and hear a few familiar voices.

“Nice game, Sam!” yelled Mrs. Jones.

“Keep it up, Sam!” said Mr. Ward.

“That’a baby, Angel Kisses!” cheered Martha. Ever since our kindergarten meet-cute, Martha’s called me Angel or Angel Kisses or Angel K.

“Nicely done, kiddo!” my Dad said as he walked up to the fence. “3 extra points tonight, you’re going on 7/7 for the season and counting!”

“Thanks! Thank you! We did alright, we have a lot of work to do to be ready for East Hills. But we’re getting there.”

“See you at home, kiddo?” my Dad asked.

“Mr. Haskins, there’s a dance tonight. Do you mind if Sam and I hang here for a little while and then head over?” asked Martha. Dad looked at Martha and then at me.

Smiling, I nodded. I could see the look of concern rush over my dad’s face. He liked Martha but she was going through a recent wild streak and he, being a member of the Cheboygan public safety force, knew about all of her recent escapades.

“OK,” he said. “But you both better be home by 11. Got it?”

“Got it!” laughed Martha. “Got it, Dad,” I said.

—

It’s lonely in the locker room after a game when you’re the only girl on the team. I don’t like the feeling. It’s like when you go into the basement and turn around to go back up and you feel like there’s something or someone watching you. Maybe there is, maybe there isn’t, but you double time it out of there just to be sure.

That’s how I am after a game. I hurry. A quick shower, a quick towel off. Jeans and a t-shirt. Hair up in a ponytail. A little bit of mascara. Lace up my converse sneakers. Organize my dirty clothes and straighten out my game pads. Done. From the moment I step into the locker room to the moment I walk out, it’s 20 minutes, tops.

Martha usually waits for me outside. She doesn’t like to come into the locker room. She says it’s “dirty and dingy and she’s not a fan of sweat smells.” She may not be wearing turquoise peplum and hot pink jellies anymore, but she’s always put together, perfumed, makeup and picture ready.

I take a final look at myself in the mirror. My freckles are as pronounced as ever. Patches of caramel spots splatter my nose and cheeks. My eyelashes look long. The mascara helps bring out my eyes. That’s what Martha says. I wipe back a few wisps of hair behind my ears. My shoulders shrug, almost involuntarily. I see this happen. I think I do this as sort of a ‘good enough’ or ‘it is what it is’ gesture. I’m telling myself “this is it, this is what you are.” I’ve tried not to, but the gesture is as much a part of me as my angel kisses. Every time I see myself shrug I shudder inside. It bugs me. I bug myself.

I can hear the music thumping through the heavy air as soon as I push open the back door of the locker room. Martha looks up from the glowing light of her phone.

“Ready?” she said.

“Yeah, let’s go.”

I don’t normally lie to my dad. And I don’t like to. I saw how difficult it was for him to give the go ahead to even attend the dance tonight. I’m sure I’d completely break his confidence if he knew I wasn’t at the dance. But he can’t know. He wouldn’t understand.

I don’t think my parents can tell or see a difference in me when I lie. But I see it. I look almost smug. There’s a constant smirk on my lips, a slight up-tick of my eyebrows. My cheeks even look flushed some of the time. I look childish. Lying is childish, so I guess that’s fitting.

Although, we only learn to lie because we are lied to. Santa Claus, wait 30 minutes to get in the pool after a meal, don’t go outside in the cold with wet hair … we’re conditioned to be outright liars. And, I’m no exception to the rule. I lie. And I’m pretty damn good at it. But just because I can get away with murder, in theory of course, doesn’t mean I feel immune to the injustice of some of my choices. I feel pretty shitty, usually.

—

We roll the windows down in Martha’s Mini Cooper and turn right out of the parking lot toward Cheboygan. The dance music fades as we pull away and zoom out of view.

“Can I get a light,” Martha asks with one hand on the steering wheel and the other holding a cigarette.

“You really should quit that you know,” I say as I thumb the lighter and the glow of the flame illuminates our faces. Martha takes a quick puff through the cigarette. I watch the smoke escape out of her nostrils and flip the lighter shut.

“I’ll quit,” she says. “But I just started. So I’ll quit someday, but not today.”

I don’t smoke. I tried it once. I hated how I looked with that white stick poking out of my mouth. It looked even worse resting between my fingers, like a rotten stem of flower. Something beautiful and natural, spoiled.

“Do you want an ice cream from Drost’s? Or maybe some fudge? Or one of those pecan clusters with dark chocolate and caramel?” I ask.

“Not really. It’s late and we really should just head right there,” Martha says. “But I thought you might say that …” she put her cigarette in her steering hand, kneed the wheel and reached around the back of her seat.

“Here,” she said. She handed me a small white box with a gold elastic bow. A Drost’s gloss sticker centered on the top. “After playing with those boys toe to toe, Angel, you deserve some chocolate.” I opened the box to find a pecan turtle, coconut bark, and a handful of dark mint meltaways. “Mmmmm!” I say as I bite into the coconut bark.

—

There we were, she with a cigarette, rotting her insides, her teeth, her skin and her hair and me with a box of chocolate, gnawing away, wide-eyed and both excited and nervous. This was our ritual and yet, the night felt off.

Sometimes I just sit and think. I consider. I ponder. I wonder about the world around me and how it came to be. Better yet, how it came to be the way that it is right in the very moment I sit thinking. This, and so many other thoughts nag at my brain.

Martha bought the chocolate for me because she knows I enjoy it.  Where does true enjoyment come from?

All the while in my thoughts, Martha is smoking. That smoke. I can see it swirling inside the car even if she is leaning to exhale out the window. Every curl of darkened air reminds me of death. Those childish Disney movies with animated ghosts, the same sort of floating discolored air as exhaled cigarette smoke. Are smokers really sucking in and blowing out our ancestors? I mean, people die and they get buried. They get buried in the ground or their ashes are thrown to the wind, eventually settling onto the ground. And, tobacco plants grow out of the ground. So, I guess there might be some truth to that. Like all of the food we eat and liquids we drink, life and death are intertwined. We can’t escape death, but we can’t live a life without it, either.

It started when I was five. This feeling that I was always watching myself as I lived.

Walking, talking, running, playing, eating, drinking, sleeping. I see myself doing it all. I’m in the moment, I’m there in reality, and yet, I am also somewhere else. I’m down the road, across the table, or in the next room. I see every conversation, every decision, every moment of beauty, of loss, of happiness, and of fear.

I see life happen. I can’t predict it, but I see it. From my eyes, in my mind, I look out at the world. In addition to what I see happening out there, I see myself seeing it all. I see me, I see my life from afar but also in the moment, up close, personal, and intimate. It’s an odd sensation. A feeling of anxiety and relaxation at once. Watching my life unfold as it unfolds before me.

Maybe not, I guess I never talked about it before now. I assumed everyone experienced life this way. But now, after all of this, I don’t think other people see life the way I do. They do not experience each moment within a view finder, blocking out all in their peripheral. No. They don’t see life this way, not like me … likely no one ever will.

“Go Sam, Go!” Martha called out shaking a cowbell in one hand and a blue and gold fringe pompom in the other.

I hear her. I always hear her. Everyone in the small stadium hears her. She’s my biggest fan, cheerleader, supporter, advocate and best friend. I like her because she’s blunt. She tells it like it is. Or at least, like she sees it.

Martha and I met during kindergarten. She in a sparkly turquoise peplum dress and hot pink jellies (those plastic shoes all kids wore in the 90s) and me in a navy and yellow sailor dress topped off with a massive yellow hair bow and scuffed up little black flats.

The first week of school was a breeze. I got a turn petting the classroom hamster, played in the sensory area, and memorized my address and my phone number. Martha had a much harder time. She was quiet and reserved. Her eyes shot around the room, never landing on anything for too long.

I noticed her one morning after Mrs. Brown finished reading Chicka Chicka Boom Boom. Actually, I noticed her jellies. As the youngest of eight in a devout Catholic family, jellies weren’t in my fashion present or near future. My scuffed up black flats were hand-me-downs three years in the making.

“I like your jellies,” I said to Martha as we rearranged our reading rugs for show and tell. She looked at me, her dark brown eyes just staring. She tilted her head to the side and her blonde curls bobbed a bit.

That’s when it happened. I realized I was watching myself while I was standing next to Martha. Even as a kid, I could see us looking at one another from an outside place. From my own eyes, I saw us interacting. I didn’t know what was happening then, I just knew it was interesting.

“I like your freckles.”

“Thanks,” I said. “My grandma says they are angel kisses.”

“That’s nice. You must know a lot of angels.”

“Nah, it’s just something my Grandma says I think.” I did have a lot of freckles, and I still do. My face is covered in little caramel spots that grow in intensity during the sunny Michigan summers. I have them mainly on my face though, none of that full body speckling of the arms and legs like some people.

We arranged our rugs so Martha and I were next to one another. Our eyes met, Martha smiled and so did I. Two girls sitting next to one another on individual reading rugs. It was then that our fate and our friendship was sealed.

Part II  Part III