Our Babies
Luke and Claire
"Welcome to Holland"
By Emily Perl Kingsley, 1987. 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.Wednesday, July 28, 2010
Parent Outreach
We have exciting news! Pam, the director of the Goldman School (Luke's Daycare), contacted me a few weeks ago about possibly doing Parent Outreach as new parents receive the news that their son or daughter has a disability. I gladly volunteered because my defining emotional moment in the hospital was after I was visited by a mom whose daughter who has DS (I think I've mentioned her visit before on the blog). After I heard her talk about her daughter's friends, schooling, and extracurricular activities, I realized that Luke would be just a normal kid who maybe will need a bit of extra help along the way....... Well...... today, the Parent Outreach coordinator, Monica, called me with my first family! A new mom received the Down Syndrome diagnosis after the results of her Quad Screening which is done about 1/2 way through pregnancy (My results had come back negative, which is why we didn't know Luke had DS until after birth), and she has all of the same questions that I originally had so she has asked to speak with me. Hopefully, she'll see what a happy little baby Luke is, get her questions answered, and realize that things really will be okay.
I'm so glad to see that you're involved in an outreach program. It's healing to be able to share our experiences with others to help them come to terms with a difficult diagnosis. :)
ReplyDeleteWhat a great job that will be for you...your positive attitude will help a ton!!!
ReplyDeletedah dah dah dah daaa! Supermom!
ReplyDeleteGood for you! You are just the type of person they need! So proud of you for accepting this new challenge!
ReplyDelete