Monday, February 20, 2012

Holland's Not So Bad I Guess

A few weeks after we first received the news about PKU, I was talking with a friend about what the experience had been like so far.  I realized in talking to her that I literally felt like my baby had died.  It probably sounds so dramatic, but I was, in fact, in mourning.  I was overcome with sadness and I became depressed and incredibly angry.  The reality was that the baby I thought I had and some of the experiences I'd thought we'd have together no longer existed and I was grieving for the loss of those dreams.  When I finally realized that, it helped me to get through those most difficult first couple of months.  I put away the ideals I'd so long held of what having a baby would be like and fell in love with my perfect tiny baby all over again.

From blogging about our experiences with PKU, I've been able to meet other moms who are going through the same thing.  One of them has a baby almost exactly Avery's age!  I mean, what are the odds?  She shared thisamazing essay on her blog (Hi, Kate!) about what it's like to go through something like this.

I think about this essay a lot and every time I read it I can't help but cry.
It's written by a mother of a child with a disability but I think it can apply to any shattered dream or trial we might go through.


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.


Jamie said...

Beautfully expressed! Things are always easier when you are able to see and talk to those who have been through it before. Loves!

Kate [City Girl Mountain View] said...

I still read this all the time as well! I really wish I could find a print of it or make something that would be worth framing. Out of all the info/handouts/charts/graphs we got from our clinic after Olivia was diagnosed this was the most helpful!

vickyj said...

Kourtney -- you're awesome!

Tyandra Perez said...

This is beautiful! I love it! Thanks for sharing!