Tuesday, October 14, 2008

John is slowly feeling better. He is still wrenching horribly, but other than that he is slowly recovering. I don't know how I feel about the Dr. from Denver saying that they don't think John has mito, and he probably has a chromosomal deletion. It just puts me back to where we were when this all started. We have no idea, and who knows when we will ever know. It would be nice if they would communicate some of this to us. I think that is the most frustrating part of everything.
Anyways, a while back I shared this poem with some of you. I occasionally have to go back and read it. It still makes me cry everytime, but it is a reminder for me to appreciate what I have. John is so amazing, and we are so lucky to have him in our life. I just wish he felt better.
Welcome To Holland
byEmily Perl Kingsley
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.

1 comment:

Unknown said...

Hi Guys-
Finally have a chance to catch up on what is going on with you guys. I hope the move to Boston goes well. I am sure that you will be missed in CB but it will be great to have John close to so many specialists. You are in our thoughts and prayers.
Love,
Sam