Monday, April 16, 2012

Down Syndrome - Maybe In Holland, But Not In Denmark and What Does Bruce Springsteen Have To Do With This?

I had the honor and privilege to give my first public talk about Down syndrome to the Rotary Club of Akron last week.  I called my presentation: "Raising a Child With Designer Genes: Down Syndrome Education, Advocacy and Empowerment".  The Rotary Club of Akron is "dedicated to the health and education of our area's youth and special needs children."   Fortunately for me, this was a wonderful audience who spends a great amount of time helping children with special needs.  In the audience were Todd and his mom (Todd is  29 and has Down syndrome, his own business and oh, just a few Olympic medals for swimming).  Also in the audience was Beckett's dad, Shon (Beckett is Joey's age and has DS). Before I spoke, I also met Dawn who is the mother of four children.  All of her children are adopted and her oldest daughter has Down syndrome and is a "Sparkles" cheerleader in Norton. I hope that I represented those of us in the "21" club to the best of my ability.  

One of the Rotary members came up to me after and said that if had not known Todd since he was practically in utereo that he would not be nearly as informed about Down syndrome as he now is.  That really hit me because that is such a huge compliment that goes both ways.  It's a complement to Todd's family for helping their friends and community understand what it means to have Down syndrome.  It is also a complement to this gentleman who took the time and effort to understand what it means to have Down syndrome or what it means to raise a child who has Down syndrome.  I pray that Cowgirl Up! also provides our friends, family, neighbors and just the world at large with helpful and meaningful information on Down syndrome.  If it does that, then we are meeting our goal.

One of the pieces I included in my presentation is a poem that is almost standard issue to any parent who has a child who has Down syndrome or another type of special need.  It is called "Welcome to Holland" and is by Emily Perl Kingsley.  There are some people in the world of special needs that identify and relate to this poem.  There are some people who hate this poem and defiantly say, "To hell with Holland-- we are still going to Italy."  

"Welcome to Holland" recently came back to my mind when I read that by 2030, if current health policies and trends continue, Denmark could be a country without a single person with Down syndrome.  Yes.  You read that correctly.  In just 18 years, Denmark may be a country in which no children with Down syndrome have been born.  A recent Danish headline read, "Plans to Make Denmark a Down syndrome-free Perfect Society."  Excuse me?  A "Down syndrome-free Perfect Society"?  Really?  It nauseates me to my core.  

While Denmark and Holland (which is actually the Netherlands) are two different places, I find it so ironic that this poem about being welcomed to Holland, Denmark's very close neighbor, is used to help parents while at the same time, Denmark is looking to eradicate people who have Down syndrome.  You know what other country is predicted to be following closely behind Denmark?  France.  Studies show that 96% of parents who have a prenatal diagnosis of Down syndrome in France choose to terminate their baby.    In an article called "'Deselecting' Our Children" by Margaret Somerville, she sums up this attitude, "A societal-level message is: 'We don't want you in our society unless you measure up to a certain standard.  You're only a potential member until you've passed the admission test we'll pay for with our tax dollars.'" 

See what you think about being welcomed to Holland:

by Emily Perl Kingsley
©1987 by Emily Perl Kingsley.
All rights reserved
I am often asked to describe
the experience of raising a child with a disability
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel.

It's like this......
When you're going to have a baby,
it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.
You pack your bags and off you go.
Several hours later, the plane lands.
The stewardess comes in and says,
"Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? 
I signed up for Italy! I'm supposed to be in Italy. 
All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.
They've landed in Holland and there you must stay.

The important thing is that they haven't taken you
to a horrible, disgusting, filthy place,
full ofpestilence, famine and disease.
It's just a different place.

So you must go out and buy new guide books.
And you must learn a whole new language.
And you will meet a whole new group of people
you would never have met.

It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while
and you catch your breath, you look around....
and you begin to notice that Holland has windmills....
and Holland has tulips.
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...
and they're all bragging about
what a wonderful time they had there.
And for the rest of your life, you will say
"Yes, that's where I was supposed to go.
That's what I had planned.
And the pain of that will never, ever, ever, ever go away...
because the loss of that dream is a very very significant loss.

But... if you spend your life
mourning the fact that you didn't get to Italy,
you may never be free to
enjoy the very special, the very lovely things ...
about Holland.

I have a new take on "Welcome to Holland".  I think it is a poem that perhaps not only applies to someone who has a gravely ill child or a child with special needs, but it is also a poem that could apply to so much more. This could apply to a career choice. You thought being a lawyer was going to be glamorous and exciting, but it's mostly blinding paperwork and billable hours? Welcome to Holland.  This could apply to an unhappy marriage.  You wanted roses and romance and ended up with a mortgage, car payment and expensive groceries.  Welcome to Holland. 

This is not how I feel about being a lawyer or about marriage for that matter, but I'm trying to illustrate that there are many twists and turns in our lives that are unexpected.  Part of growing up is realizing that some of the things we had "planned" don't turn out how we thought they would and instead of spending the rest of our lives grieving over that disappointment, we need to embrace the life we have.

I think the part of "Welcome to Holland" that I have a hard time with is the line that says, "And the pain of that will never, ever, ever, ever go away..."  That's the line that kind of deflates me.  That is just not a Cowgirl Up! sort of approach to this unexpected, but incredible journey.

This is where Bruce Springsteen comes into play.  I know-- you were wondering how he was going to be tied into Denmark and Holland and special needs.  Here is how.  My husband is a HUGE, HUGE, HUGE Springsteen fan, which by default, makes me a loyal follower as well.  Over the years we have seen Springsteen in New Jersey, D.C., Cleveland, and Detroit.  This month we are going to FOUR concerts.  My husband has a few hobbies that he is passionate about and they include movies, Sprinsteen and Cadillacs.  Far ahead of his hobbies are his sons and his wife, but he is truly passionate about his hobbies and by default, that means that I am as well.

Detroit was our first "Wrecking Ball" concert and there is just something about a live concert that is like a religious experience to me.  Do you feel that way?  There is just nothing like an amazing live performance.  Where the bass is so loud and deep that you can literally feel it in your lungs.  

A Springsteen concert is like a revival.  Thousands of people praising together.  Dancing.  Celebrating.  And this is where I found my new version of "Welcome to Holland".  I literally stood at the concert last week and thought about Holland and what Joey having Down syndrome means for our lives.  This is where I found a song that hits me deep and takes away the pain of knowing that in some countries, people like my child are not wanted and are sought to be eradicated.  This song gives me hope.  When I think my own little city is in ruins, I am going to choose to rise up.  

After all, isn't hope the one feeling that can help overcome grief?  Come on, rise up!

My City of Ruins

Bruce Springsteen and the E Street Band perform on March 28, 2012 in Philadelphia. Springsteen will perform in Moncton on Aug. 26. (Alex Brandon/AP)

There's a blood red circle

On the cold dark ground
And the rain is falling down
The church door's thrown open
I can hear the organ's song
But the congregation's gone
My city of ruins
My city of ruins

Now the sweet bells of mercy
Drift through the evening trees
Young men on the corner
Like scattered leaves
The boarded up windows
The empty streets
While my brother's down on his knees
My city of ruins
My city of ruins

Come on rise up! Come on rise up!
Come on rise up! Come on rise up!
Come on rise up! Come on rise up!
Come on rise up! Come on rise up!

Now there's tears on the pillow
Darlin' where we slept
And you took my heart when you left
Without your sweet kiss
My soul is lost, my friend
Tell me how do I begin again?
My city's in ruins
My city's in ruins

Now with these hands
With these hands
With these hands
With these hands
I pray Lord
With these hands
With these hands
I pray for the strength, Lord
With these hands
With these hands
I pray for the faith, Lord
With these hands
With these hands
I pray for your love, Lord
With these hands
With these hands
I pray for the strength, Lord
With these hands
With these hands
I pray for your love, Lord
With these hands
With these hands
I pray for the faith, Lord
With these hands
With these hands
I pray for the strength, Lord

Come on, rise up!
Come on, rise up!

1 comment:

  1. Excellent post! I Am glad to hear that all went well with your presentation at the Rotary club. I am sickened by what is going on in Denmark and soon to follow France. There will always be woman who choose not to have prenatal testing and the tests are never 100% accurate. So there will still be children with Ds being born in these countries. I wonder how they will be treated in a society that is seeking to eradicated those deemed "less than perfect" :-(


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