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, April 26, 2010

"Excuse me...."

Well Melissa and her mom went up to the hospital this morning and spent the better part of the work day with Luke while I was at work. A good friend of ours stopped by to see the little bean. She thought pretty highly of him. If nothing else, he is kind of cute. He takes after his mom!
Ok, no. He looks just like me. Which brings up other concerns, but that's for another day....

The good news is that Luke is making progress. So much so that our nurse at the NICU texted Melissa to say that she had surprises for us. When Melissa go there, she saw that he was in a crib instead of a box like he had been in! We really weren't sure what that meant, but it at least looks more normal, and that counts for something. We'll call that a win!
The second surprise was a bigger deal. He sucked down an entire bottle today! That tuckered the little kid out. He was sleepy the rest of the day. That's the second big win of the day. Luke needs to have a bottle, without tiring himself into a "coma", for every feeding for several days. If you know anything about Melissa, myself, or my family, you would be amazed by this! We are all professionals eaters! Anyway, maybe he will be a late bloomer....
As I left work around 3, I headed up to the hospital to see the little chucker. As I pull up I see the funniest thing...my wife and her mother leaving. They had gotten there at 10 am and were just leaving. Guess there are worse ways to spend your time!
I went up to Luke's room and was just watching him sleep. I didn't want to hold him because he needs his rest, but he twitched like Ralphie dreaming about squirrels! That's as funny as you would imagine it to be, trust me. Anyway, the doc came in and was doing some routine stuff when he reached over me and said "Excuse me!". I looked what he was reaching for and it was Luke's oxygen flow control. He turned it off! Count that as #3!!! We watched to see what his oxgen levels would do and they sank down from 93..92..91..90..89..88............89...90....91...92..93..94..95..96! The doc wants him above 90% and more ideally around 97% or above. So to see him do that all on his own was great! The last thing the doc said before he left was that he wanted Luke to move to a bottle every other feeding. Awesome. Needless to say Melissa was pissed that she missed it, but that's ok. I told her that he was pretty much like he was before the doc turned off the oxygen. She laughed. We will see what Miranda (our favorite NICU nurse) has to report to us tomorrow morning. Here's hoping that he pulled an all nighter and passed his breathing test!

Oh, random note. So we have these 24oz cups that a restaurant in town gives when you buy a drink. They are close to the hospital (kind of) so we end up going there with our mothers. Anyway! I had a glass of ice water in mine which was on the counter as I was writing this blog. My wife asks me if there is anything scary in my cup. I ask her what she means since I don't really make a habit of drinking scary things! She says "you know, scotch". To which I ask her how much scotch does she think I drink at any given sitting!

I mean, it is a 24 oz cup! Besides, if it's not Scotch(ish), its crap!

1 comment:

  1. AWESOME AWESOME AWESOME job little dude!! Can't wait to hear how the night went...

    ReplyDelete