You have either read this poem before or never heard it before. Either way, it invokes in all us how we deal with expectations. When it comes to our children, we only want the very best, and when we know they are going to be met with certain challenges in life that our hearts break for them. Ms. Kingsley captures this agony so well but also points out the beauty of the unexpected.

I can tell you from personal experience that while Usher Syndrome is not a well-traveled road it is the one we are on. Although there are some detours, forks in the road and some bad weather it is still our road. We have met some amazing people on this road of ours and we are excited that we are not on the hum-drum road of the typical because there is nothing typical about our children. They surprise us every day. They overcome what we, ourselves, might not be able to. They inspire us to be the best possible parents we can be.

Our reward? Well, when you gaze at your child and forget all the things you didn’t expect what did you get? You got a beautiful gift that you get to nurture and prepare for an amazing life—relish it.

Take a look around. Your road may be new but we are here to help guide you along. 

Accessing Independence - HHSH

just diagnosed

Welcome to Holland
by Emily Perl Kingsley
©1987 by Emily Perl Kingsley. All rights reserved. Article printed with permission of the author.

I am often asked to describe the experience of raising a child with 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.