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.

Friday, April 30, 2010

And we've turned the corner!!


Two days ago Luke struggled to breathe while on oxygen and was barely taking 1/2 his bottle on every other feeding. It's amazing what a difference 48 hours can make!! Yesterday, the nurses, therapists, and doctor sat down to have a meeting about Luke's progress and decided to change their approach to his care. Rather than keeping him on a strict feeding schedule, they opted to change to "on demand feedings" to see how he responded. Turns out, he is as stubborn as his mom and dad and just wanted to eat when he felt like it. Now, he is taking soooo much more of his bottle at almost every feeding! Plus, the nurses even decided that Patrick and I should feed him to see how he responds. Both of us were completely nervous since Luke is still hooked up to a lot of monitors and is a bit floppy due to his poor muscle tone, but we both rocked the bottle feeding! In order to leave NICU he'll have to eat two ounces at every feeding, so we still have a long way to go, but this change is HUGE.

Today, LUKE WENT OFF OXYGEN COMPLETELY!!!! Yep, this morning Dr. Whittan came in and pulled the oxygen tube and Luke did perfectly a-ok the entire day. Whereas they had been increasing his oxygen as a crutch during feedings, he no longer needs even this. It's fabulous to have one less cord strapped to his poor little face although he still has his tiny little feeding tube in his nose for when he can't quite take a full bottle.

Then, to make the last 48 hours even MORE perfect, Dr. Whittan pulled a few strings and transferred us to a room with a window! Finally, Patrick and I have some concept of day/night while we hang out with the little dude. All of the nurses keep teasing me because I'm so excited for my new window, but it's the little things that make us happy. It's been a good two days.

14 comments:

  1. FANTASTIC!!!!!!! So happy that the little guys is doing so well!! Sometimes they just need a little jump start. :)

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  2. That is wonderful! So glad to hear about all of the HUGE steps Luke is taking!

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  3. Yay!!! I am so excited for you guys that Luke is doing so much better and you now have a room with a view!!! Hooray!!

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  4. Now tell him no party tonight! ;) Can't wait to see him tomorrow!!! WOOT WOOT!!

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  5. That is so awesome! Can't wait to see him. Have you tried to coax him out of the hospital with promises of boat rides? Remind him, and he might just eat enough to get out on the lake.

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  6. God is good, all the time...All the time, God is good!

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  7. Glad to hear that he is improving!

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  8. Yeah Luke!! Such great milestones:)

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  9. What awesome news guys! I am glad to hear that he is doing so much better :)

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  10. Such great news, guys!

    bout that whole window thing: my architectural learnings would have never allowed me to design a hospital room without a window (unless absolutely necessary), but my Patrick had a good point: Luke's the son of an E-Dub... he's probably pretty comfortable without a window! I'm glad they got you one though, Melissa, as you're not quite used to that! Hehehe.

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  11. YAY!!! I'm so glad to hear that he's making lots of progress and before you know it, he'll get to come home! I'm glad you guys finally got a window too. I know what kind of difference that can make. We'll continue to keep you guys in our prayers!!!

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  12. You GO Luke! Keep up the progress!

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  13. Glad to hear it! And Yay! for a room with a view!

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  14. Yeah Luke, you're awesome! The pic with Patrick feeding him is so sweet. Hope this trend continues and he comes home soon!

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