Tuesday, September 21, 2010

A club nobody wants to be a part of

I follow some bloggers who have sad stories to talk about.  Before I had Luca, there was something that drew me to these people - how they managed to get through terribly tragic situations with such grace.  I was inspired, mesmerized almost, by their stories. 

The ones that especially hit me now are ones where the blogger has lost a child.  Now, I find it difficult to read their entries.  I click on a new post, and pause, and chills run up and down my arms.  We almost became part of that club - a club nobody ever wants to be a part of.  A world nobody can imagine until you're there and lose your child.

I am not part of that club.  But the line between life and death was so thin.  When I got the news that Luca was being transferred and they were going to do as much as they could to save her, I broke down in tears.  Ian and I held onto each other and sobbed.  The next thing I did, which was pretty much instinctual, was grab my rosary and pray to God that He wouldn't take her from us.  And as we were packing our things at the hospital so we could go to the next hospital, my mind wandered to very dark places.  I thought, "what am I going to do if she dies?  If I have to plan a funeral.  A funeral."  That word...funeral...replayed in my mind over and over again.

We aren't part of that club.  We're part of a very different club.  Another type of club that nobody wants to be a part of.  We have a child with a very rare disorder that non-medical people (and even some medical people) have never heard of.  It will affect her for the rest of her life.  It will affect us for the rest of our lives.

While other people around me are having babies and looking forward to the future, I am mixing medication in a syringe to give to our baby, and looking at her every movement to make sure she's okay. 

A friend of mine sent the following link to me a few weeks ago and it totally describes our lives right now.  Enjoy.

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.

© 1987, by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author.  http://www.ndsccenter.org/resources/holland.php


  1. I can't say that I can relate because I was the child of a medical issue that doctors had never heard of vs. the parent of that child, but my heart goes out to you. You both sound like amazing strong people and I am sure you are making great parents! My only tiny advice? Don't forget to take alot of pictures. My parents don't have many pictures of me when I was really little because I was sick. And that always has made me sad. I understand that they had ALOT on their minds. But just don't forget to take alot of pictures. :) My mom never wanted to have a picture of me with my feeding tube in (which was all the time), but now she wishes she would have taken more regardless of that tube.

  2. I loved that story. And I remember when all this stuff was happening. I could barely tell anyone what was happening without sobbing and she wasn't even my child! So I can't even imagine what you and Ian went through. But as an outsider that had the privilege of seeing you guys through this - you guys demonstrated some amazing strength.

  3. But...you also get to be a part of a club few are lucky to be a part of. One where priorities get rearranged and the small things that used to be such a big deal, just don't matter any more. Life becomes something you never, ever take for granted...Moments become so much better because of how far you've come.

    That story does a great job of putting it into perspective, I believe I've seen that being passed along my line of work.

    You guys have such incredible strength. Luca is the luckiest thing to have you guys, as you guys are to have her!


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