The PWS National Conference: A Personal Perspective

The Prader-Willi Syndome conference was memorable for me in many ways.  I met so many wonderful parents and professionals who are all working for a common goal, to improve the lives of the children and adults with PWS.  On one hand, it is humbling to be a part of a cause that so many have dedicated a large portion of their professional life to furthering the treatment and knowledge of PWS.  I reconnected with some of you and made some new friends. On the other hand, it’s also humbling to be a part of the “family” of parents who have a child with a disability, which is what Clint Hurdle movingly described in his opening address to the large crowd.  I am sure that many a parent had tears in their eyes as I did when he spoke. I didn’t take notes. I can’t remember a good quote, but I do know that being a parent of a child with Special needs is not what we envisioned nor asked for, yet this is where we are.  I used to dislike the “Welcome to Holland” poem, but now that I am far enough along, I not only get it, but embrace its message.  In a very important way, the conference addressed the emotional impact that every family faces. It led me further along my own path of grieving and acceptance. Thank you and Happy Holidays to all the organizers, professionals, and the families that walk this similar path. 

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.

Contributed by:
Susan LaPlant
Marketing Coordinator

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