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.

Wednesday, February 23, 2011

Bath time in the hospital

Whew! What a crazy past few weeks. After six days in the hospital, Luke was FINALLY released to go home on 2/15. The goal was for him to stay off oxygen for 24 hours, and we finally made it at 10 p.m. that evening (well, minus a little 30 minute cheat that they gave us). Our kid is smarter than we give him credit for. We think he could really breathe fine the entire time; however, he just wanted to act "sick" so Grandma G. would come visit. Staying in the hospital wasn't so bad when he had her to cuddle with, but it was even better when everyone was home. Luke's new favorite activity is taking walks in his red wagon. After Grandma left, he's constantly been asking us to go on more walks...spoiled kid....

Here are some of our favorite pictures from our adventures in taking a bath at the hospital.




4 comments:

  1. What a clever idea...a bumbo in the shower/tub! Might have to try it myself!

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  2. I hate that you guys had to be in the hospital but I wouldn't have had the pleasure of meeting your precious Luke, had he not been sick. Thank you for welcoming in and letting me take care of him for a few hours while he was in Sutton. I pray for you guys daily! Please give him some hugs and kisses from his "favorite" student nurse, Amanda. I hope he is doing really well and enjoying being at home. I know mommy and daddy are. Take care and talk to you soon.

    Amanda Vick

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  3. Amanda,

    It is so good to hear from you!!!!!! Hope school is going to well. We are enjoying being back at home finally! But, it sure makes Luke sad not to see Nurse Amanda :)

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  4. Tell Luke that Nurse Amanda is sad that she isn't getting to see him either. Maybe we will have to figure out a way to fix that! :-) Hope you all are doing well!

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