Welcome to Holland

This is a poem that perfectly describes to me the whole experience of what it's like having a child with a disability. I love this poem and can totally relate to it, so I thought I'd share it with you.


Welcome to Holland

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.

Pictures from the Airplane

Here are some pictures I took from the airplane as we were landing on Friday.

Back in Yellowknife

Well Rebecca and I got back to Yellowknife Friday night after being there for 10 days. The whole trip took way longer than expected, but we are now glad to be back home and things are going well. Thanks to everyone for their prayers while we were in Edmonton. She got her g-tube put in on Tuesday, May 16th. This will make feeding her way easier, as she is very difficult to feed by mouth. Dawn - if you are reading this - I have to say I was surprised but happy when you told me that you had managed to feed little Sweetie a bottle while I was out shopping and getting my hair done in Edmonton. You have the touch! We are still feeding her by mouth as well, but having the tube allows us to give her some formula by mouth and some through the tube, way less stressful! Also it's easier to give her medication now. Here are a few pics that were taken in Edmonton.

Update from Edmonton

So it is Monday May 15th now and we are still in Edmonton. We got here Wednesday the 10th, when we got to admitting they weren't even expecting us so we had to wait about an hour and a half till they figured out where we were supposed to go. Once on the ward, I spoke with a nurse and a medical student. Then Thursday I finally spoke with the pediatrician and another med resident. That day Rebecca was supposed to have a test done where they see how fast her stomach empties, we waited and waited, then they cancelled it! It was finally done on Friday, and it showed that her stomach empties at a normal rate, so that's good. Friday I talked with the gastroenterologist, the doctor who will be putting Sweetie's g-tube in. She told me the earliest she could do it was Tuesday the 16th. So they let us leave for the weekend, Rebecca and I went and stayed with some friends in Beaumont, my friend Dawn and her family, they used to live in Yellowknife too. So we had a nice weekend, it was fun and much better than spending it at the hospital!! We even got to do some shopping on Sunday afternoon.
So now it's Monday, and we're back here. Then plan is to put the g-tube in tomorrow, and there is a slight chance we could be home by Wednesday evening, but probably not till Thursday or Friday. They want to make sure everything is working ok before sending us back to Yellowknife. Wednesday is our 3rd anniversary, and I for sure thought we would be home by then, that's a week since we left! Calvin even took the day off work, and now it looks like we won't be back till later in the week. So I probably will have spent Mother's Day AND our anniversary without Calvin in Edmonton.
Well that's all the news for now....looking forward to coming back to the 'Knife later in the week.
Update: They just told me that they plan on putting the g-tube in tomorrow (Tues) at 11:30 am. So please keep Becky in your prayers at that time, thanks!

We could use your prayers...

On Wednesday (May 10) Rebecca and I are going to Edmonton. She will be getting a feeding tube put in. This all came about way faster than expected. We had been having a real hard time feeding her lately since starting her on some medication for seizures, it was making her really sleepy and extremely hard to feed. She's hard to feed on a good day, let alone on medication. Since we've switched to giving her the medication just before bed now, she's been easier to feed again, but the pediatrician feels that it would still be a good idea to get the feeding tube at this point while she is healthy instead of waiting till it gets even harder to feed her by mouth. With the tube we will still be able to feed her orally as well, but the tube will be there to give her extra fluids/formula. Besides the g-tube, they will also do a test where they check the pH level in her esophogus for 24 hrs to check for acid reflux, and if it is bad they may want to do another procedure called a fundoplication. I'm not too keen on this procedure and hope that she will not need this. It's something that can be done at a later time if need be, but they feel that if she needs it anyways it would be better to do it all at the same time instead of putting her through surgery twice.
So we could use your prayers over the next few days and weeks. I will be going down to Edmonton alone with Rebecca, Calvin is not able to come along. We may be gone just a few days, but it could be longer. We'll see how it goes and we'll try to keep you updated.
On another note, Rebecca loves going to the pool! I took her once last week and she really liked it so I will be going one more time yet tomorrow with two of her little friends. After that she won't be able to go for awhile till everything heals up.