“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."
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.”
[Note: Author Emily Perl Kingsley wrote "Welcome to Holland" in 1987. She has been a writer for Sesame Street since its earliest years. When her son, Jason, was born with Down syndrome in 1974, Emily and her husband Charles became activists, educating the public and developing resources to help Jason and other kids with special needs fulfill their potential. When asked why she thinks "Welcome to Holland" has had such resonance for so many people, she replied: “It's about a lost dream, any lost dream. Any change from the original plan. It says that it's okay to continue to feel the pain of the loss; that it's legitimate pain. It says that you're entitled to be disappointed, which then allows you to go on and enjoy what you did get.”]
Yes, yes, yes! How wonderfully this articulates how I feel, and has reinforced a very important point. I have already seen a few of the windmills of Holland; other, wonderful D-Mommas (and one very special D-Grandma!) out there that have been cheering me on from their very own corner of the internet.
As I walk through the tulips, I gaze in wonder at the precious beauty that is my daughter. A baby who has been dealing with this adversity before she could even walk, or got her first tooth. She has already been an inspiration to me. Who knows how many others will hear her story and be changed by it?
As for what other precious sights this trip will bring, who knows? I think the Rembrandt on the wall would be my very own daughter, driven by this horrendous disease, discovering the cure for diabetes.
At the age of 5, of course... because I can't wait that long!