Emily Perl Kingsley

Social Taboos & A Beautiful Essay by Emily Perl Kingsley

If you follow my blog regularly you know I was struggling with some recent comments and stares my Frankie, a dachshund, in a wheelchair received last weekend.  I think because I was among so many dachshund owners at the event I attended, I thought I would receive more support.  But I realized, like any disease or challenge, others don't want to face it if they don't have to.  While IVDD is common in dachshunds with one in five being diagnosed, many do not know about IVDD and many choose to not want to know.  Sort of the theory, "out of sight, out of mind."  But it can happen and it does happen.

Not everyone is going to agree that putting a dog in a wheelchair is the right thing to do.  But it won't stop me from continuing to educate others that IVDD is not a death sentence (as so often happens they are put to sleep when diagnosed with IVDD), but rather an adjustment, and one that is not to hard to make as I have experienced.

Struggling with comments such as "What is wrong with your dog" had me taking it all quite personally.  The word wrong, as I wrote in a previous post struck a chord with me. Nothing is 'wrong' with Frankie- she just has IVDD.  She is a wonderful, happy, little dog.  I couldn't help but think how you wouldn't go up to a parent and ask their child with Down Syndrome, "What is wrong with her/him?"

But a friend who has a child with Down Syndrome who has friends whose children are in wheelchairs told me I'd be quite saddened by the comments and stares their children receive.  I thought in todays world we were past that, but to find we have a long way to go, and those social taboos still do exist.  So though I encounter it with Frankie, I can only imagine the affect it has on children in wheelchairs.  Frankie does not know what others may say, but being her mom, just like parents of kids in wheelchairs, I do, and it hurts.

But I also know the many joys and blessings Frankie has brought to my life.  I wouldn't trade having a dog who can walk normally and give up all the good Frankie has given me.  In my mind and heart she is priceless. 

In sharing my thoughts with my friend whose child has Down Syndrome, she shared with me an essay she shares with families and children.  I thought it was so amazing.  It is in the detours of life where the most wonderful things can happen– we just have to be open to them because when we are, I believe (and know) it takes us to places we never imagined… and they are places in our hearts and minds that can only be experienced by those who opened up to them.  So here is the essay (Thank you, Cheryl!):

Welcome to Holland

An Essay by Emily Perl Kingsley

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 guidebooks and make your wonderful plans. The Coliseum. The Michaelanglo David. The gondola 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 guidebooks. 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 awhile and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandt's.

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 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 go away, because the loss of that dream is a 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.