welcome to holland

The day after Colden was born, our doctor gave us a poem intended to ease the pain of the diagnosis, and perhaps provide a bit of perspective on our new found situation. It's titled Welcome to Holland by Emily Perl Kingsley.

I can't put it any better, so I'll let the the author's words speak for themselves:

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.

Well, we've landed in Holland. It's time we learn Dutch....

To help find our way in this new world of down syndrome (aka Holland), I turned to where else, but the internet. One of the first major resources I discovered was a blog called Noah's Dad about a family in Texas raising a beautiful little boy with down syndrome named Noah, who is only about 15 months older than Colden. I cannot tell you how inspiring his site has been for Matt and I; nor how the wealth of information provided has helped us navigate this unknown landscape of Holland.

Rick, (Noah's dad), posts the cutest videos of Noah, along with helpful tips on everything they've encountered in regards to development, therapy, doctors, specialists, etc. If it has to do with down syndrome, they've addressed it. It's a wonderful resource for parents, friends, and anyone who wants to know more about DS. Noah's dad is paving the way for us, and letting the world know that it's OK to have down syndrome. It's really not scary at all. I hope Noah's dad never stops sharing this message; nor his tales of sweet Noah.

Another wonderful resource was given to me on my first Mother's day, a poignantly timed, and rather thoughtful gift from one of my closest friends, the book: Bloom: Finding Beauty in the Unexpected by Kelle Hampton. Ironically, it was released the day before Colden was born. Her story is so frightening similar to ours in that she didn't know, and found out shortly after the birth of her daughter, that her beautiful little girl had down syndrome. The images she uses to retell her story are absolutely gorgeous and convey perfectly the emotional journey she went through in the days, weeks, and months after Nella was born. She also keeps a current blog, Enjoying the Small Things, which chronicles her every day life with Nella, big sister Lainey, and baby-to-be. Plus, it's chock full of the same stunning images from her book. The moments and stories she continues to share remind me to not just enjoy, but to celebrate the small things in life.

I'll leave you with a quote from her book, a string of words that have found their way into the catalog of my heart; filed under my sweet Colden.

Love me. Love me. I'm not what you expected, but oh, please love me.