Thursday, April 7, 2011

Joshua's Journeys #56 Missing Holland

I received an e-mail today from a neighbor of the beautiful tulips that the Netherlands grow. I smiled looking at the bright, happy colored pictures, the windmills, and the peaceful atmosphere in which the pictures seemed to be taken. Ever since then I can't stop thinking about the poem (some of you are already nodding knowing what I am going to write) "Welcome to Holland." It is a poem written for those that have a child with special needs. It is about how you imagine things to be when you are pregnant and dreaming of that perfect family, but then find yourself somewhat detoured from where you thought you were going, and your arrival into Holland.

I remember the first time I received this poem, which I must've received a few handful of copies the first week or two that Josh was diagnosed. I remember reading it, and really being bothered by it, I didn't like it for several reasons, and a few things I still disagree with in terms of my feeling of entering Holland (especially the part where it says its slower--if you are booked solid from one appointment to the next and needing to remember tube feedings, suction catheters, special bottles, noses, etc. let alone the packed diaper bag for two infants then I don't want to know what fast paced is!). But I kept those copies, reread them from time to time, and realize it is a good way for some to understand what it is like to begin this amazing journey when you had no idea you would be going there. I feel like there is magic in Holland, only a parent of a child with special needs knows how amazing their child is, they have a connection that no one would ever know. Saying that I won't take the things Joey and Jillian accomplish for granted doesn't touch the surface of what it feels like to be in Holland and see your child do something as simple as eating a half a jar of baby bananas at 3:30 in the morning, how you don't care about the sleep you've lost over the past few weeks or months because those swallows, and not having to suction or look for the blue food coloring coming out of the trach, and trying to catch it on video for Daddy, the speech therapist that has become a good friend, or anyone to brag to and understand what this accomplishment means, it is truly priceless to have a trip to Holland. How I wish I could return...
I love you Joshua...

Welcome to Holland by Emily Pearl 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 is 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 guidebooks and make your wonderful plans...the Coliseum, Michaelangelo's David, the gondolas of 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!"

The stewardess replies, "There's been a change in the flight plan. We've landed in Holland and it is here 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 is just a different place. So, you must go and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never had met. It is just a different place. It is slower paced than Italy, less flashy than Italy, but after you have been there 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 Rembrants. 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 is where I had planned."

The pain of that will never, 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 go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.


Nonna and Grampa said...

I remember that poem.

Justin and Victoria Nelson said...

so, so true. sitting here myself with a girl who keeps pulling herself up to a stand in her crib at 2:30 a.m. and is talking away to anyone and everyone who will listen...we have waited so long for this.
thank you for sharing your beautiful joshua with us, and for continuing to be such an inspiration to us, kurby family.

Christy said...

This helped me to understand a small part of it.

Abby Lynn said...

That is simply beautiful as I sit here, tears in my eyes. take care of yourslef..hugz Carrie