Fuck the Dutch...

There is a 'handout'  for parents' of kids with disabilities, and it goes a little something like this......

WELCOME TO HOLLAND by Emily Perl Kingsley.

c1987 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 of pestilence, 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.

Oh man is this such a load of bullshit.  Seriously? First of all, that's a cold thing to say about the Dutch. Secondly, you think a little vacation change in plans is comparable? HAH! I've heard other parents say this 'poem' was handed to them along with a diagnosis.  Perhaps it gives others solace, but not me.  It's a lovely little summary of the way people want life to be, the way movies portray life to be - summed up nicely with a bow.  Oh, something sad has happened? As long as the 'result is positive'  -  two people fall in love - or save a life - or change the world - or run across the country - or regain their memory - and everyone can go home feeling good about themselves, the movie, and life.  Lives are not derailed by tragedy, but instead are finally on the right path! The tragedy CAUSED the happy ending!  You can go home at night and feel safe and cozy tucked in your bed, thinking 'See, everything DOES happen for a reason!'  Sleep well. 

The truth of the everlasting stress, drudgery, anxiety, fear, anger, grief, longing, jealousy, self pity - the truth of real grief - is what no one wants to hear or see.  Or live with.  There is a haunted look to a person, shadowed in their eyes.  A look acquired through constant stress, worry, fear, a look that reflects their future, emotions so deep you can't fathom - a look you may see, and recognize, and pray to god it never happens to you.  All these lines in my face getting deeper.  
Most people who sustain a long term chronic debilitating injury lose many of their friends and eventually spouses - we don't want chronic, we don't want 'different', we want ALL BETTER! Cured! Fixed! Not better?  We are still survival of the fittest...

I've always wanted to see Italy.  It's not perfect either, and there is no guarantee that that trip would even go well.  Tragedies are not immune to time, and as a song says "I guess we're all one phone call / From our knees. "   But Italy is what I planned, what I expected, and what I wanted, and everyone else I know is there.  I'd love to tie it up all neatly in a bow for you, tell you how awesome I have become, how perfectly things worked out, and how we will all live happily ever after, better and happier people.  But now I'm somewhere with no road map, or directions, and I don't really know how many people will stay to travel this whole road with me.  This place sucks.  It's cold, and scary, and no matter what unexpected, cool, or even miraculous events that may arise on this trip, I would trade it all in a minute to be in Italy.