Blogging is kind of a trip into experiments and new experiences. This is not my first blog, but it is the one I've been most faithful to (there's actually a little story behind that, but I'm saving it for another post, another day). The fun part - beside the writing - is designing how the blog looks and reads. There are templates for the meek-at-heart, and there are customization buttons on the templates for the brave. I suppose there are actually some out there in cyberworld who write their own code, design their own templates. I fall somewhere in the customization zone. I choose the layout, picture, fonts (type, size, and color), as well as the 'gadgets' at the side of the page.
What I want you to know, is that I made my background picture choice with a definite purpose. My daughter has Down Syndrome. She is a huge blessing in my life. But having her, makes me the mother of a child with a disability. The following is not something I wrote - but I wish I did. The author, also a mother of a child (now adult) with Down Syndrome, expressed the experience best in this wonderful metaphor. It is completely true. Even the part about the feeling of loss never going away. Sometimes in my bed, alone in the darkness at midnight, I find myself playing the what if game. What if my daughter had been born without a disability? What would we be planning, where would she be, how would our lives be different. The what if's sometimes end in tears. It's just a fact, and it's ok. Because I love Holland to the depth and breadth of my being; did I mention that tulips are my all-time favorite flower? I've never known Italy; Sierra is my only child. And I couldn't be prouder of her - who she is, what she is, and where she is. I wouldn't trade her for the world - certainly not for Italy
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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. The loss of that dream is a 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.
Emily Perl Kingsley - 1987
Thank you, God, for my daughter. She is perfect in every way.