Our Babies

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.

Thursday, May 1, 2014

Gain a Little, Lose a Little

So goes the story of our lives:  Claire FINALLY hit 20 pounds, but after a brief plateau, she started losing. Now, most of us will fluctuate a little on our weight, but when you only weigh 20 pounds, this is a BIG DEAL. Here we are - back at square one - talk of a feeding tube once again. Slowly but surely she has continued to gain strength, so we are pounding calories until our next appointment. So, until then....

But let's be honest:  this family doesn't have time for a hospital stay! (We just need to deliver this memo to Claire's metabolism). The kiddos have been busy staying fun with Tori and Katherine. Tuesday was originally going to be an afternoon at the park/splash pad for the big kids, but Claire wasn't about to be left behind. She yelled and yelled and yelled from her crib during nap, so Tori decided just to take all three kiddos (brave soul), and INSTANTLY, Claire stopped crying/howling/yelling.

Luckily, my big project for work is simmering down, so that should leave LOTS more time to enjoy the excellent spring weather. Last weekend was the zoo and Brackenridge Park, a beautiful area with trails, playgrounds, and a train. And lets be honest, it has been at least two weeks since Sea World, so that's probably in our near future. Patrick keeps talking about some projects around the house, but all we hear is blah blah blah......

Here are a few pictures from recently:





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