November 1, 2013

The Right Words

I can not think of a time, prior to Addison's diagnosis, that I ever noticed someone in public with Down Syndrome.  Not that I was looking.  Actually, until a month before his birth, I had NEVER known anyone with Down Syndrome.  I had never given it much thought until recently, but now with my background in nursing, that seems weird to me.

Since Addison came into our lives, everywhere we go, we all notice people who have Ds.  For example, last week we took the kids to Lancaster to see the Sight and Sound production of Noah.  After the show, there was a huge crowd as people were heading one way leaving the first show and also people coming the opposite way for the second show.  We were all gathered in our group talking about what we loved and where we would eat dinner.  It was a little bit chilly and time for Addison to eat and I was all about moving quickly to Filmore, paying no mind to anyone outside of my kids.

And then I saw him.  I have no idea what drew my eyes from the side walk up to his face but I instantly recognized he has down syndrome.  Then I was struck by how tall he was.  At least, 5'10".  The average height of a man with Ds is less than 5'6".  Our entire interaction was only seconds as we passed each other going in opposite directions.  Over the rest of the evening, every single person in our group said to me, "Did you see the man with Down Syndrome?"

So it seems people with Down Syndrome are everywhere.  And I love that.  Not only is it counter-intuitive to the general belief of what people with Ds can and can not do, but it gives me hope that Addison will be out living life and having a grand old time of it.

But here's the thing that frustrates me.  When I see someone with Down Syndrome or a mother with a little one who has Ds I want to talk to them.  I want to learn about them.   I want to know what their triumphs and their struggles are.  I want to tell them how much better off the world is because their mother didn't abort them.  I want them to know I am grateful God made them.  And most of all, I want them to know all about their amazing creator and Savior.
Not long ago, I was in Walmart.  I saw a young man and his mother walking in front of me near the bread aisle.  From behind I instantly saw he had down syndrome.  I wanted so much to talk with this happy pair.  I even left Emma and my cart to follow them to the next aisle.  But as they rounded the corner, yet again, I stopped and let them go.  I as angry with myself and my light mood quickly disintegrated until I was almost in tears, right there next to the peanut butter and jelly.

And why?  It's because of this stupid thing called political correctness.  It's so hard to talk to anyone anymore because if we use the wrong word or terminology we will offend someone.  My black friends are now "African American"  people from Mexico are now "Hispanic" and I don't even know what we are supposed to call Homosexuals these days.

Lest you are mislead, it is not because of the message that I hesitate.  It is our common link.  It is because of down syndrome that I feel we have an open door and yet because of down syndrome I don't know how to speak the words in my heart.

As soon as Addison was born and I started researching Ds I quickly became aware that if you use certain words, phrases or terminology, you will offend a whole world of people.  Even if it is the proper terminology to begin with.  Despite the fact that it is a medical diagnosis, for example, don't ever refer to a child's learning disability as retarded.  And a person with down syndrome is disabled, not handicapped.  And whatever you do, don't call a baby with Ds a "Down's Baby".

And personally, I think that's stupid.  Raging a war on words as if they have some power.  It is not the words that matter but the heart and the attitude behind them.  Since Addison was born, many people we love dearly have used any and all of these terms to refer to our son.  And guess what?  I wasn't offended even in the smallest amount.  Because I know these people are speaking in love for me and for my boy.  But I am finding out I am the very rare exception.  There are entire websites devoted to what's wrong with the "R" word.  Don't believe me?  Google it.

But in the meantime, understand that in this place of special needs where we need community and a sharing of ideas more than anywhere else, we are politically correcting ourselves into a place of silence and impotence.
Why didn't I say to the mother at Target the other week that I think her toddler, with Ds, looked adorable in his little glasses? She was obviously having a hard time with 5 other children in tow and a cart full of groceries.  I am sure she could have used a bright smile and some encouragement.  I would have taken time to speak to any other mother, so why not this frazzled mama?  Because I don't know how to talk to her without risking offending her.  I have spent a lot of time thinking on the question.  Really, would I be upset if someone came up to me and said, "I see your beautiful baby has Ds.  My three year old has Ds, too."  No, I would be so grateful that someone took a minute to make a connection with me.  And down the road, when Addison is a teenager, would I be offended if a stranger came to me holding a newborn with ds and said, "I see your son has Ds."  No.  I would be glad to tell her how wonderful a journey it can be.  Yeah, I know we have a long way to go.  But, let's just imagine.
And yet, I stand silent.  Angry and kicking myself.  Staring after a young man struggling under an armload of wonder bread searching for the words to say and finding none.
Yesterday, after Addison's appointment at Children's, Allen and I stopped in the Lindt store to pick up some treats for the kids.  We filled our bag with truffles and I went to wait at the register.  There was a gentleman discussing Hazelnut truffles with the sales lady.  When he finished he turned around and took a look at the sleepy Henry who was snuggled in my arms.  "You've got a mighty fine baby there," he said.

Well, that made me smile as I looked up to meet the eyes of this kind stranger.  "Yes, I sure think so!"

And then, as if to make sure I understood, he went on to explain.  "I am a pediatrician.  And you can tell by
the bright eyes and the way he moves his hands."  I realized now that this man was much older and that he was not just referring to our amazing boy but also to down syndrome.  He elaborated just a little bit more, "He's doing well.  You don't usually see those things when they have... difficulties."

And that was it.  That's all he said.  I am not often speechless.  In fact, it is not uncommon for me to lose an hour standing in a store talking to a complete stranger.  But before I could  even say "thank you" he was gone.  And I was left to wonder if this man knew God had sent him to me.

Until Next Time,

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