May 28, 2010 part 2

Ross in addition to finding out you were a little boy, the doctor also told us that your heart had a genetic defect and that there were two holes in it. He called it an AV canal defect. It really scared your mom and I and we were really worried that it would cause you to be really sick. The doctor then told that this condition of the heart gave you an 85% chance of being born with a genetic disorder called Down Syndrome. At first your mom and I were really sad and we cried. We thought that this condition was really bad an that you would suffer so much. We were sad that you would not be normal like other kids, but you know what? The sadness went away really quickly when we realized that you were still our baby boy and we were going to love you more than ever because you were a gift from heaven given especially to your mom and I. If you get a chance I want you to have me read a poem that your mom shared with me when we started learning about Down Syndrome. It is called Welcome to Holland. I will explain how it made your mom and I feel when we read it for the first time. Just know in your heart that we love you with all that we are and we will make any sacrifice to see you be all you can be. We will be there to hold your hand in this journey and you will never be alone. We Love you Ross!

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.