Friday, January 8, 2010

One Of My Favorite Poems

To those who have not read it and to those who have read it many, many times...

"Welcome to Holland"

By Emily Perl Kingsley, 1987. 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.

Monday, January 4, 2010

Turn The Light Back On

Our family spent time on New Year's Eve writing a resolution list for this year. One for Jon, Hailey, Olivia, me and one for the family. They included the usual things like learning something new, working harder at something, and one of my favorites for Hailey, helping Livy to walk and talk. I am adding a new resolution to my list, to "turn the light back on in my life".

Last night I read an entry from one of the blogs I follow: Calm Amongst the Chaos

The author speaks about how she learned to turn her light back on after having a child with special needs. It amazes me how much in common I have with these other moms. It is as though she is speaking my words, my story. I told Jon that was what was missing from my life. That light that once shined so bright. Yes, there are times when there is a sparkle, a ray of light that comes from within but not that complete, whole, honest and true light.

My journey begins now to find ways to come out of this cave I sometimes find myself in. It includes fully learning to accept Livy the way she is and find comfort in what she is not. Five years into this journey and still I struggle. It is especially difficult when our children get sick and regress. It is during those times I need the most strength.

So I ask, what has your journey been to bring the light back in? Have you turned it back on or do you continue to search? Hoping this new year will bring my "series of events" to my "light bulb moment"!