Saturday, December 12, 2009

Welcome to Holland

LOVE this wonderful example!!!

by Emily 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 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...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 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.

Spina Bifida updates and PHOTOGRAPHY!!!

So it has been a LONG time since I have updated and last time we were going in for his Spinal MRI. Well what we found out was not very good news. Carter has what is called a Syrinx down the entire length of his Spinal Column. (http://en.wikipedia.org/wiki/Syringomyelia). When his shunt wasn't working his extra spinal fluid builds in to the syrinx and compresses on the nerves in his spine, which can cause like a temporary paralysis. This is why he wasn't moving his legs very much. This is something that will not go away and we have to watch him like a HAWK to make sure and pick up if we do not feel that his shunt is working. But for now his shunt is working, THANK GOODNESS!! We also went to see a new Dr. Dr. Byrd and opthamologist so that she can measure and see if his optic nerve is being affected when his shunt isn't working. This is one of the reason's that Dr. Boop didn't think it was working and sent us for the MRI, bc his left eye was turning in. Well when we went to see Dr. Byrd his shunt was working and she said his Optic nerve looked PERFECT!! We are so thankful for every bit of good news we get. We went back to see Dr. Boop this week and he said everything looked good for now and we don't have to come back for 4 months. This is Def. the longest we have gone, the longest before then was 6 weeks. This makes me very Happy and nervous at the same time! Anyways enough updates on that.
So you ask what have Carter and I been doing Lately, well Photography Sessions of course!! Here are just some that I will include, he is getting so big!
Well Carter is waking up now, I will update with his 9 month stats Later! GTG