In 2008 I was invited to hear Emily Kingsley speak in Pheonix...I was not able to attend. As far as I was told, Emily is the driving force behind Sesame Street and their introduction of placing children with special needs on their program.

When I worked with Dr. Sally Parenting (now retired) she asked me to read the Holland note (below) and respond, in regard to my son. How did I feel when he was born with so many medical complications to his eye (http://www.personalchildstories.com/our_story.php)?

I replied in an email. Here is what I told her:

"Sad, frustrated and happy. Sad because it's so true we give birth to a baby just assuming there will be nothing wrong. We find out there is something wrong and at first we might be angry - Why me? What did I do wrong during the pregnancy for this to happen? Then the fight or flight kicks in - what to do? Okay...fight. Learn all you can to make it better and in the process you learn so much more than any "normal" child would have taught you that you end up feeling guiltily for ever wishing YOUR baby had been "normal" to begin with. That is very frustrating. Then you move past that, brush off, and figure out a way to help others - through your situation. As you watch your own pain and struggles helping others you settle into a feeling of happiness. All the other stuff is gone and past and what's left is 'happy.' You made it through, it didn't kill you. It only made you stronger and now you can help others find happiness in the midst of their "abnormal" situation.

Now I am crying :-)

Holland does have beautiful tulips and windmills...unique only to them..."

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Here is the famous note by Emily Kingsley, mentioned above:

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.