Welcome to Holland

My grandma gave me a wonderful essay written by a woman named Emily Perl Kingsley at the beginning of this journey and I have read it over and over on those days when I've just wanted to yell, "IT WASN'T SUPPOSED TO BE LIKE THIS!"  It's called Welcome to Holland:

"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."

Today we landed in Holland.  Kimber has officially been diagnosed with Prader Willi, a genetic defect on chromosome 15 for those who care about the medical side of things.  What does this mean you ask?  Well, it means Kimber will walk. It means Kimber will talk.  It means Kimber will go to school.  And it means Kimber is still our perfect little girl whose kicks and wiggles and smiles make us cheer! That's what we have chosen to focus on today as we have been processing this news.

There is no cure for Prader Willi.  It comes with some difficult challenges.  Kimber will walk, but it will be much later than other kids.  Kimber will talk but at first it may be very difficult to understand.  Kimber will go to school but possible learning disorders will cause her to work very hard for every grade she earns.  The biggest challenge facing our little "Kimber Bean" is that she will always feel hungry. Starting at about age 2 she will never feel full.  We will have to watch her diet very closely and make sure she gets the exercise she needs.

When I was pregnant I often thought about what life as a mom would be like.  After helping with two younger sisters over the past couple years I felt like I was prepared for the whole baby scene.

I imagined packing up my dolled up little girl into her carseat to run errands in town.  I imagined quiet moments rocking her as she nursed . And I imagined sleepless nights calming her when she cried.

I didn't imagine this.  I didn't imagine the oxygen tanks and monitors that we would need to accompany us on our trips in to town.  I didn't imagine having to learn to care for a G-tube site or prime a feeding pump every three hours when feeding time came around.  I certainly didn't imagine pumping breast milk like a cow for two months (and counting).  I didn't imagine that my sleepless nights would not include a sobbing newborn.  And I didn't imagine that I may need to lock my refrigerator and pantry to keep my little girl safe.

Yes, the duties as Kimber's mom are quite different than I imagined in my pregnancy dream.  From day one, it has been drastically different from the life I had felt I had prepared for, AND I WOULDN'T CHANGE IT FOR THE WORLD.  It's time to pick up our new travel guides and head down this new road.  I hear the scenery is simply incredible.