A poem about an unexpected journey.

This is a poem sent to me by a friend of our cousin Cindy. I wept as I got to the end.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. 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.

Please Pray.

Please be praying for the nurses to be able to get an IV in Olive. She has been poked SOOOOO many times today with no good results. An anesthesiologist unsuccessfully tried to put a PICC line in today for 1.5 hours as well. They are letting her rest and will try again 3-4 hours. She was even crying tonight (the littlest and quietest little cry), and we've only heard her cry 2 times before.

Update.

Well, a few days ago the doctors told us that Olive is doing better than they expected after removing her first temporary drain. She is able to control her body temperature much better, and is off the ventilator--though still getting a little oxygen. They said because of this, that evacuating her to the States is another possibility again since she wouldn't have to be in an isolette on a stretcher (which was a previous issue for taking her on a commercial flight.


They are also saying that they would like to ideally wait on putting in the VP shunt until she gains more weight (2 kg or 4.4 lbs).

Over the last 2 days her head circumference continued to grow so yesterday they placed another temporary 7 day drain. If she remains stable there is a chance we will take a commercial flight with her to the States along with a doctor and nurse at the end of these seven days. If she would get an infection, or her condition would deteriorate at all, then we will plan on staying here in Thailand for her next treatment.

We are still waiting on a bed at the government hospital to open up.

Today we are supposed to have a meeting with the director of the hospital to discuss a plan of care for her at this point. Some good news is that Olive's neurologist said that her brain tissue is beginning to expand again a little after removing the fluid. The more it expands, the better her prognosis for the future will be.

We will keep you updated when we are a bit more certain what is going on ourselves.

MUCH LOVE,

Lynette