26 years ago (Welcome To Holland)

I really appreciate the sweet comments to my last post! I feel bad for writing two such emotional posts back to back because I try to keep things in a balance of serious and happy around here (and well, in my life) but today is a special anniversary.

It has been 26 years since my parents received news that would alter their lives forever. Note, I didn't say ruin. I emphasis the alter part of the previous sentence.

December 13th, 1984 was the first time they heard the word Cystinosis. It was the day I was officially diagnosed. I was blessed with a gifted pediatrician who knew something was wrong with me and promptly sent us to the nephrologists at the University of Utah hospital. I have heard so many horror stories about years of misdiagnosis nightmares; I owe the man my life. Which is why he is now Sookie's pediatrician as well.

 {Isn't my mother gorgeous? I think I look like ET or perhaps a much less adorable version of Sookie. ;)}

My Cystinosis family is such a vital part of my support system. There were some of my biggest cheerleaders throughout the pregnancy. I have met the most inspiring, brave, poignant, stubborn, and hilarious souls in my journey; most of them all younger than me. And the strength of everyone just leaves me amazed and baffled how hard people can fight.

Over the years I have come to the realization that a chronic or terminal illness is often times harder on the family and friends of the person living with the affliction that it is on the actual person.

There is a beautiful, heartbreaking, and stunningly accurate poem I have loved for some time now that captures sentiments of those living with medical issues and parents of differently abled children as well. It is called "Welcome to Holland".

“Welcome to Holland” 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.