Welcome to Holland

I struggling with knowing how much I want to talk about PKU on my blog not because I’m unwilling to talk about it but because I have no idea who gets on here and looks over my blog. I never want Jaxson’s PKU and what our family feels about it to become the latest gossip or topic of discussion. I want people to see Jaxson and not PKU. However PKU is a big part of our lives as we continue to learn and accept it.

A while back I went to a workshop for cooking low protein and I meet some fabulous people who told me I needed to sign up for an email help group. It’s called listserv and people with a connection to PKU can sign up and email each other. I get about 10 or so emails a day from people all over the world. Sometimes they are just questions to the group, sometimes answers to previous questions, sometimes updates on phe levels in food, and sometimes just inspirational stories.

Today I received this email and I thought it was too good to just keep to myself. I know that most people who read our blog are our family and friends who have been so helpful and caring about Jaxson’s diagnoses and it’s to you that I want to share this with. I think it hit a little too close to home for me I found myself crying while reading the end thank goodness Brett’s at work I know my crying about PKU sometimes stresses him out because he just wants to be able to take the pain way and he can’t. So to my extraordinary family and friends that adore our son, Jaxson I share with you this poem and thank you for being there for us!

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.