Tuesday, September 25, 2007

Welcome to Holland

Hello all,

Welcome to Stephen's world. It is a place full of wonder and curiosities. There is laughter, joy, and awe on some days, and fear, pain, and bewilderment on others. One thing you will always find is love. The kind of love that just can't be explained. Some people don't understand it, but maybe by stepping into this amazing world, they will learn to appreciate the unspoken love given by a special needs child.

My dreams for the future of this site are to create a place where families can come to find resources, encouragement, and maybe a little perspective on their situation. Feel free to share ideas, but please don't be offended if I don't use all of them. I look forward to seeing how this site evolves over time.

I credit the inspiration for my title to Emily Perl Kingsley. I won't go into all of the details about her, but I highly recommend reading about her on Wikipedia. Now I would like to share the story she wrote back in 1987.

Thank you Emily for explaining our plight so eloquently.


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.

1 comment:

wehdostables said...

I absolutely loved this. I read it out loud to my husband and we were both in awe. Of course, I couldnt read much more, the things I relate to the most make me so emotional. I am amazed every day at the strong moms I read about and exchange ideas with. I am so thankful for the blogs that have connected me to you guys! I am so thankful for every step forward our baby makes and try to focus on that and not the bad things. I feel guilty for the frustration I have at times when I hear of someone going through so much more.
We miscarried once before our baby came and it is truly a loss, an empty feeling, but it will never come close to the grieving I did over the loss of my pregnancy when our baby was born so early. It took me about 4 months to get to where I wasnt angry anymore. I stopped asking why me? I say now that since I was so afraid of babies and it took me 7 years to even decide to try for one that God knew that and wanted me to start small!
Thank you in advandce for any insight/ideas you can share. We are really making progress now with feeding, vomiting. I will read more of your blog soon...