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.Monday, October 4, 2010
Thursday, September 30, 2010
Surprise Day Off
Sunday, September 26, 2010
Luke's new favorite activity (well, he's at least not screaming bloody murder when I make him do it) is sitting up in his bumbo. He's content just rolling around the floor, but we need to put his abs to good use since he has to do so many baby sit-ups! He loves to bang his rattle on the tray and watch things fall on the floor.
Who knew sititng up could be so exhausting?!?! Sometimes we have to put MonkMonk on the tray so Luke has something soft to put his head on. Sometimes MonkMonk sits in the seat with Luke to keep him company.
Luke LOVES having one foot up when he is sitting down. I think he hates his little seat and tray so much because his feet get pinned down. We have to be careful at dinner to keep his toes out of his cereal!
Yep, even when he is asleep in the car he likes to have one foot propped up. Usually while we drive he holds his feet up by his face and talks to them. I finally bought a little toy that straps to his seat so he has something more entertaining than his feet. Go figure he kicks the toys with his feet rather than hitting it with his hands. Whatever makes him happy!
After hours and hours trying to coax Luke to roll over, it is now difficult to keep him on his playmat! In fact, this afternoon he rolled off his mat, across the carpet, and over to the tile floor. Some days he is content to just lay in one spot, but today was not one of those days. Ms. Jessie and Ms. Anita (PT and OT) will be thrilled to hear that report! You can tell from this picture that he likes to pull on the sides of his jungle gym and get into funny positions. I'm convinced it can't be comfortable, but he doesn't seem to mind.
Luke has perfected propping himself up on his arms. He scoots his little legs all over the place, but he hasn't quite mastered balance yet because he usually manages to flip himself onto his back instead of get anywhere. Ralphie and Sophie do a good job of keeping him entertained so he stays on his tummy for a bit. They are in big trouble when he gets truly mobile.
Luke had an exhausting day playing! After a busy day, a warm bath, and a yummy bottle it is time for bed. Good night!