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.

Monday, August 19, 2013

Just Keep Swimming...

Hello there!  It feels like summer has hit a tipping point. Louisiana's notoriously hot and humid summers, especially in the last few years, have been brutal.  This year, however, has been much cooler.  Not to say that things are "cool," just cooler.  Which has been nice, when we have a crazy 3 year old that just wants to go run around the back yard!  We got a new pool for The Dude to splash around in and he loves it.  It also had a random side effect.  We went on the boat this weekend and Luke came up to both of us and begged to get into his life vest and get into the lake!  He usually hates swimming, but it was all we could do to get him out of the water!  Crazy kid!

Luke also likes to cook now.  Even if we microwave his nuggies, he has to watch them go around.

I don't even know what we are making, but stirring it sure is fun!
 Lets not forget his favorite activity.  Which is pretty much doing anything while naked.  I don't know what is wrong with him, but he is frequently running around with his butt out



Now, the siblings have been getting along pretty well.  With Claire getting a bit stronger and able to sit up and keep her head upright, Luke is finding more interest in her.  Claire might SEEM like she enjoys Luke's impression of Gene Simmons, but really it's just the rockin' plane they are on.  That girl likes to be moving a lot!





Finally, Claire's eating has gotten a lot better, but she still isn't gaining weight.  She seems like she is putting on some chunks, but the scale doesn't lie.  The GI doc was pleased with her development, but not her weight.  So we need to go back in a month.  She seems to be doing ok though!  Just look at her sassiness!




Well, thats about it.  Melissa is fast asleep in the bed and Ralphie is keeping my left leg warm.  Hopefully it won't be another few months until we write again!  Just hang in there with us!
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