Tuesday, August 30, 2011

I Love Holland

Lily swinging outside this morning, wearing her bib (made by her Aunt Courtney)
that says, "I Love Holland."
A little while after it was evident that Lily was going to face some major challenges in this life, someone shared an essay with me about being the parent of a child with a disability. I read it, cried, and then tucked it away because I thought, "This isn’t really Lily’s destiny." I thought I was being optimistic, but really I was just in denial. I think I was allowed to be at that point.

I was reminded of the essay earlier this year on a day that I was feeling particularly sad and frustrated that Lily was not progressing at the pace I wanted her to. I had peeked in on Lily during her nursery class at church and my heart sunk at what I saw. All the other children were sliding down a little plastic slide, playing with princess dolls, drawing circles with their crayons, and worst of all, not just walking—but running. Meanwhile, Lily was in the stroller that I keep for her there, so that she's not left lying on the floor to be stepped on or tripped over. She was sucking on her finger and watching all the children around her play and giggle. The side-by-side comparison before me was so painful that it only made me more aware of all the things that may not happen in Lily’s life - or that may not happen in our lives - because of her setbacks.

I came home from church brokenhearted, so I jumped on the computer to get my mind off the fact that I may never see my daughter in a wedding dress and started looking for something to comfort my soul. My search quickly found me staring, once again, at the same essay I had foolishly disregarded over a year earlier, so I read it for the second time. The difference between the first time I had read the essay and this time was that while I was now well aware that Lily’s life was different, I was also conscious that - not counting a few breakdowns like these - I was still extremely happy. Retrospect is a mighty tool when used properly, right? The words began to bring me comfort, peace, and understanding, and they reminded me of that happiness that I do feel on a daily basis (because of Lily and not despite her).

The essay is called "Welcome to Holland." It was written by Emily Perl Kingsley. Ms. Kingsley is an award-winning writer for Sesame Street and has written many scripts, songs, and over 20 children’s books. She is also the mother of a son named Jason, who has Down's Syndrome. Ms. Kingsley was responsible for the integration of mentally and physically disabled children and adults into the Sesame Street format and has served on various boards and committees helping to raise awareness for children with disabilities. She’s the pinnacle of the kind of person I’d like to be one day, but for now, I can't thank her enough for reminding me that though Lily isn’t like the other children in the nursery, her life (and mine) will still be full of laughter, happiness—and tulips. Oh, there will be tulips!

Warning: You will probably melt into a puddle of tears (as I am known to do) while reading this.

Welcome to Holland
By Emily Perl 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'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.