Friday, January 22, 2010

what's it like?

What it is it like to have a child like Rhys, who requires infinitely more attention and care than the average newborn/infant/toddler? Well, even though we don't know any different in our personal lives we do know it is a lot of work. A lot of work. Is Rhys considered special needs? In the strictest sense of the word, yes he is. And that is really hard for me to type. Certainly he isn't what immediately comes to mind when you think disability, but it's true nonetheless. It's very likely you don't think of the behind the scenes work a child with special needs requires. It's a completely different lifestyle for us as parents.

I found the following on a blog I regularly check. I liked it so much I decided to steal it! :) Not really steal it, but borrow it to share with all of you. If you're in our little preemie circle you might have already seen it, but if you haven't it's worth a read. Our family might make it to Italy one day or we might not. Regardless we are learning to appreciate Holland and the detour that took us there.

Welcome to Holland
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 awhile 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, very lovely things... about Holland.


amyoutlaw said...

Fantastic post.

honey said...

What a beautiful story! Rhys is a precious little guy and you & Cody are wonderful parents. I am so excited about little baby sister!!!

Jennie and Bernie McCoy said...

Great analogy!

Rhys is such a handsome little devil! I'm so glad to see you are both doing so well! Every time I eat a yogurt for breakfast, I think of Rhys!

RyanAndrew2007 said...

I've seen it before, but I love reading again and again.

I've been following Rhys' story for quite some time, and I've been enjoying reading about Little Sister too. I hope things continue to go well for all 4 of you.

Michelle Smith said...

Rhys has very special parents, a perfect fit for a very special boy.

Lisha said...

im so glad you put the poem on your blog! even though I have read it so many times on our blog, it still brought goosebumps when I just re-read it!