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, February 10, 2011

Adventures in eating and RSV.

Well the last few days have been crazy!  We decided to take Luke to the doctor on Monday because his cough was getting bad.  They said he had some congestion and an ear infection.  They gave him a shot of antibiotics and told him to come back the next two days to get the same shot again.  All good.  Well that night, Melissa gave Luke some peaches in his cool net-food thingie.  That term "cool net-food thingie" is a trademarked name, so no, we did not make it up.

NOM NOM NOM NOM!


Give me more peaches and no one gets hurt!

Well, the second day went well enough.  Luke got his second shot and everything was good.  The third day, the PA took his oxygen levels before his shot and realized they were low.  Well, this wasn't good.  They then told me that if it didn't get higher, they would have to take him to the hospital.  This was a shock since he was playing and happy the whole time.  Well, since I (Patrick) had taken Luke to his appointment, I was going to have to tell Melissa the same thing. Over the phone.  And they were going to take him in an ambulance.  REALLY?  The funny thing was that this wasn't a big deal.  They just needed to put him on oxygen and transport him on oxygen.  So when I called her, I was very careful how I put it.  I even told her that she didn't have to come down to the clinic if she didn't want to.  I knew that wasn't going to happen, but all the same.

So we get there and they put him on oxygen....and that's it.  Thats all he needs.  Well, that and some breathing treatments so that his oxygen level gets higher.  Once they can take him off the oxygen they will need to keep him here for 24 hours.

He seems to be doing well.  His cough is almost gone and is happy.  Luke even got to webcam with his Grandma G tonight!  We hope to be out of here soon.  Maybe even this weekend!  Keep your fingers crossed.
Luke is playing doctor on his dogger in his hospital crib.

1 comment:

  1. KarenFebruary 11, 2011 at 9:17 AM

    Wow! Baby Luke looks much better in this hospital picture than he did on screen last night! I love his new "arm action". So cute! Give him kisses for me!

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