Off the Beaten Path:  A Place to Breathe

The Polebridge Mercantile sits beside a rutted dirt road that sometimes gets washed out in the spring.  The building is made of logs and in the old western tradition, has a false-front, to give it the appearance of timber-framed respectability.  As an admonishment against kicking up too much dust, a hand-lettered sign nailed to a post reads, "Slow, people breathing."

I am sitting on a log watching a young boy dig holes in the soft dirt.  He's built an incredible maze of connecting tunnels as deep as he is tall, so that his golden mop of hair disappears and reappears as he works.  We are on the edge of an open meadow that spreads east, across the north fork of the Flathead River, to the less-traveled west side of Glacier National Park and its wild places, with names like Bowman Lake and Akokala Lake and Kintla Peak.  I once heard the howl of a wolf in this deep wilderness, where even the mosquitoes are fierce—swarming in thick clouds, undaunted by even the strongest bug repellent.

I am waiting for my turn in the outhouse, listening to the little-boy-speak of this little boy, thinking that I might introduce him to my sons, all three of them, but knowing that if I do, we will never be able to leave.  They will want to spend the rest of their lives digging with this boy in the sweet dirt.  A man dressed in new jeans and a teal cotton shirt passes me, saying "Howdy-do," a greeting that sounds contemplated, like something he thought of back east as a good way to say hello to the locals. 

I nod and take my turn, then walk to the store.

Inside, the giant wood stove fills most of the space.  Plain, plank shelves stocked with an eclectic assortment of goods line the log walls.  There is handmade soap and huckleberry jam for the tourists; tins of tuna, peanut butter, Zatarains Dirty Rice, and Kraft Cheese and Macaroni (the cheesiest) for the locals.  People make the long drive out here for the baked goods—sticky buns and giant Danishes with great golden crusts and jewel-like cherry jam centers.  Bacon, cheddar and chive rolls, or sprouted-wheat bread.  I am joined by seven-year-old Carter, and three-year-old Bennett.  My husband Tom and Bennett's twin brother, Avery, are sitting on a woven twig loveseat on the porch.

We make our selections, an apple Danish and a spinach and Stilton bun.  The woman behind the counter is young and tan.  She has brown hair and golden eyes.  As I pay for our food, I mention the boy out back.  He is hers, I can see the resemblance.  We are women in a place of mostly men, we have this in common, and now we are mothers of boys.  She pats my hand and gives me extra napkins, plus a little package of wipes. 

On the porch, I dole out the food, cutting it into pieces for the little boys.  "I'm thirsty, Mom," Carter says.  "Me, me," which is Bennett's way of being included.  So I go back inside and select Guava juice in a can, and return to the register.  Hello again.  I give her money for the juice.  The young woman touches my hand once more, saying, "Wait, I have something for you.  I want you to try it.  Take this."  She reaches to the shelf and gives me a spinach, artichoke and parmesan roll.  "You'll like it," she says.  "For your boys!"

"Let me pay you," I offer.

"No, no! Take it!  For your beautiful boys!"

I don't know what to say.  I never know what to say. 

Avery, our middle son, has Down syndrome. 

Is it because of him that we got the free roll?  He wasn't in the store, but there are big glass windows that look out onto the porch.  Or was it simply an act of kindness, one mother to another?  What does it matter either way?

Mostly, I move through our life as other mothers do, going from each thing to the next, thinking about where Carter might have left his coat, estimating how long until the little boys need a nap, planning a way to round them up and back into the car with a minimum of fuss.  My life is more ordinary than I ever could have imagined, back when we first learned Avery had Down syndrome.  He was just five days old. 

And yet, our place in the world is different, now.  I see people struggling with that difference.  They want to say something, but don't know what to say or how to say it.  A stare that lasts a bit too long, or an awkward, unexplained kindness.  Sometimes, people say that I am inspirational.  Or exceptional.  I know these things are not true.  I don't feel exceptional.  I am not special, or if I am, we all are.


I am nothing but a mama.

When Avery was first diagnosed, we were told many things, mostly about how hard our life would be, how difficult.  But no one told me how beautiful he would be.  No one told me how sensitive he would be.  No one told me he would hug me with his whole body, wrapping arms and impossibly nimble legs around me at once, such a strong embrace.  No one factored in love. 

Children have a refreshingly straight-forward approach to Avery.  Instead of asking about his differences, they ask about what he can do.  Can he crawl?  Can he help? Can he dig?  I think about Bennett, Avery's twin, who is just now learning language.  He doesn't have many words, certainly nothing like special needs or developmental delays or even Down syndrome.  He doesn't need them to know Avery.  And yet, that's the first thing most people want to ask me.  What is it?  What is wrong with your child?  What do you call it? 

For a while after Avery's diagnosis, I told people he had Trisomy-21, which is a lesser-known name for Down syndrome.  I think I wanted to protect Avery, and us, from all the assumptions.  I wanted to create a space for him that it seemed we had lost—a place for him to find his own way, as any child does.  And I wanted us to be free to form into whatever kind of family we might become; I wanted to have the power to do that. 

In the early days, I didn't have the words to describe it.  I know now that I am talking about garden variety prejudice, and I am embarrassed and even ashamed that it took me thirty-six years to know what that really feels like.  One person in seven will experience some form of disability over the course of a lifetime; and that's not including the many families who look, act or sound different than the traditional model for any number of other reasons. 

Our desire, as humans, is to classify and sort things by naming them.  It is an old and instinctual habit that once had its benefits.  Sharp-toothed things with claws—run!  Always run!  I am not saying anything new here.  It's what we do, what we've always done.  When I look someone over, like I did the man at the outhouse, and decide if they are from-here or not-from-here, I am doing it.  But it can be taken too far.  Words have the power to do more than separate us from each other.  They have the power to hurt.  Words like retarded, disabled, defective.  There are other words we could use:  unique, unusual, individual.  I am asking that we move beyond our basest instincts, and resist our tendency to label each other.  It's what I want for Avery; it's what I want for us all. 

In the three years I have been Avery's mama, I have found there are many of us out here—mothers and fathers finding our way in what I think of as the wild places of parenthood.  We are making up new rules for our families.  We are creating better ways of talking about them.  We are forging our trails off the beaten path. 

And in this new place, we are finding room to breathe.


column added on 2006-06-03 :: ::

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Jennifer Graf Groneberg

Jennifer Graf Groneberg lives and writes at the end of a twisty gravel road with her husband of fifteen years and their three sons. She maintains jennifergrafgroneberg.com, writes the blog Pinwheels, and a blog on ParentDish.

Jennifer's book Road Map to Holland about mothering her middle son Avery, a fraternal twin born with Down syndrome is due out April 2008, and is available for pre-order now.

Read more of Jennifer's Off the Beaten Path column.

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