Wednesday, April 13, 2011

Loving Holland


by 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.

I first came across this essay in a class I took at Pitt. At the time Aiden was 2 months old, and I was feeling lost, afraid, scared, and felt like being a mom was nothing like anything anyone had ever prepared me for... ever. I was still adjusting. I could related to the poem, not because I had a child with special needs, but because I felt like people were telling me that being a mom was going to be one way, and it was anything but. While I realized that I was in Italy with Aiden, there was something about the essay that stuck with me. 

A lot of things are kind of blurry after the Dr. told us about Maddie, and I'm not exactly sure who brought up the essay first, it might have been the social worker at the hospital, or Grant's mom, or the Coordinator at the Down Syndrome Center, but wherever it came from, I knew immediately what they were referring to before they even finished explaining what the essay was about. I knew that these people were bringing up the essay to help comfort us, and in Grant's mom's case, because she loves us and was trying to ease the pain. And, I appreciated the gestures. But, I was so angry that I couldn't even bring myself to reread the essay. I didn't need to, I knew what it said and I wanted nothing to do with it. I didn't want to look at all the beautiful, wonderful, amazing, and fantastic things that Holland had to offer. I wanted to be back in Italy, and I didn't want anyone referring to what I was going through to a trip. Because, the pain and devastation I felt could never compare to the disappointment you may feel about not getting to see Italy. This was deeper, harder, and more powerful than that.

It took me a few months before I was able to reread the essay. When I did, it made me feel like I wasn't so alone, but I was still angry, and I still hated Holland. That is, until Maddie started to show me all the wonders that Holland has to offer. At 7 weeks old, Maddie started rolling ... 7 weeks!! Then Maddie started smiling, and then laughing, and sitting, and inch-worming and here we are at 14 months and she's still showing me all the amazing things Holland has to offer. And, it's not just the developmental aspects of Maddie that are so amazing. There is something about that little girl that is so much more than other kids. I can't explain it, I can't put my finger on it, but she lights up the room she's in. She draws strangers to her, she captivates them. When she looks at you, she makes you feel like there's nothing in the world that she'd rather be doing than sitting there with you and studying you. She is beautiful and sensitive and sweet and had I not ever visited Holland, I never would have seen or experienced these things. There are still times that I am jealous that Maddie didn't take us back to Italy, but there are more times that I think people should be jealous of us because they won't ever visit Holland. I get the best of both worlds, Italy and Holland. People who visit Italy over and over are missing out!

These days, Maddie has been showing us more of the wonders of Holland and I'm loving it! I can't get enough of her. She thinks she's a rock star. And, frankly, so do we! But before I go into the reasons why, here's a picture of her "mad baby" face. This is the face she gave me when she realized that I had the camera in my hands. I can only imagine that she will perfect this look as a teenager, however, right now it's pretty cute and funny! I love the furrowed brow!

She quickly warmed up to the camera and gave me a happy face! Do you notice what else she's doing? That's right. She's sitting up, and she got there all by herself!! This is how I found her when I went to pick her up from her nap. I don't think she knew what I was making such a big deal over, but she was just happy that I was happy. I don't know exactly how she's doing it, because I have yet to see her in action, but I couldn't be happier!! She's done it three times since then.

Aiden was so proud of his baby sister, too, that he went and got his camera to take pictures as well.

And, as if that wasn't enough, Maddie decided four days later that she was going to pull herself into a stand. That's right... she's standing now, too! This was the 2nd time she had done it, and luckily I remembered the camera on my phone! Like sitting up on her own, she's only done this a couple of times, too. But, it's just the beginning and now that she knows she can do it herself, I have a feeling that there's nothing to stop her!

I'm excited to see what else my little tour guide has to show us, but Ms. Kingsley was right, once you adjust, catch your breath, and learn the language, you can see that Holland is beautiful and wondrous and, frankly, there's no place I'd rather be.