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.Saturday, November 3, 2012
Halloween and Progress
Other than Halloween, progress at therapy is our big news! It seems like the neurologist may have really known what she was talking about because Claire's personality has transformed on her new medicine. Whereas she always seemed like a very tense baby, she was actually very relaxed this week. I thought I had been noticing a change, but it is very easy to over-analyze; however, within the first five minutes of therapy, Patricia, Claire's therapist, raved over how alert and happy she seemed! Whew!!! It wasn't just me being a crazy mom!!!
Claire's biggest improvements have been with her head control during tummy time. Since she stayed hunched over for so many months from her belly aches, her shoulders are very weak. So, we're spending lots and LOTS of time trying to get some extension in her upper back.
I took this picture the other morning, and it shocked me. This is the first picture EVER where Claire looks happy and healthy. Notice that she's looking at the camera, her cheeks are rosy, and she's smiling!!! These are all three things that had never happened at the same time prior to her new medicine.
She's still a little small and weak, but she's starting to enjoy her exer-saucer. The music and textures keep her entertained. This picture is unusual because usually big brother is right there helping her press buttons. He has been really good at helping her with her workouts. I think he figures that he's the therapy expert so he can teach her a thing or two. However, when we were working on rolling over, he tried to lead her by pulling on her ears. I don't seem to remember that from his therapy sessions...
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