whoever you want to be…

Jack, by Tiffany Ashton Baker

Read Part One

So Jack and I are in the hospital getting to know each other. It’s hard to come to grips with the whole idea of a child with Down Syndrome. We just weren’t prepared at all. They brought him to me, my much longed for son, and handed him to me as I lay in my bed. He had a shunt of some sort stuck in his head and I was horrified by the sight. It made me shudder to think of a needle in his head and again it reminded me of how he was different from all the other babies. Nevertheless I held him close and tried to get him to nurse. His little face, his lovely eyes, his tiny fingers on tiny hands… these things I focused on, these things I adored about him.

Friends began to come to visit. They weren’t quite sure how to act or what to say. No one wants to say “I’m so sorry” after the birth of your new baby but many of them felt that way.  Others focused on the practicalities: “Well you won’t be able to homeschool now!” And another “Well it’s a good job you were planning on homeschooling!” No one really knew what we were to expect. The majority of friends and family were so very supportive. They held my little man, ignoring the needle and seeing only his lovely face. They cuddled and cooed with him and showed me that, to them, he was just perfect.

My best friend stopped in. She is a math professor and a lover of research. Since the moment I had called her and shared the story of Jack’s birth she had been in research mode! The wonderful woman had spent hours online researching Down’s Syndrome and had printed out reams of paper for us to look at. Bless her! I was totally overwhelmed at that point but really appreciated her work and her words when she reassured me everything was going to be just fine and that Jack was adorable.  (Everyone wants to hear their baby is adorable… it’s just the right thing to tell a new mother!) Over time we would get to read and absorb all of her words and they became our go-to guide for a while. It is so important for new parents of a child with Down Syndrome to have access to information and support. The Down Syndrome Association for Families provided us with a folder of helpful information and frequently asked questions which was also very reassuring.

Congratulations cards flooded in with some inspiring and comforting words for us. Several friends told us that Jack was born to us because we were the type of parents who would be perfect for a child with Jack’s needs. It was certainly a nice thought but I’m not sure either of us felt prepared at that point! One wonderful friend found this essay. It’s called Welcome to Holland and whilst initially making me cry it also provided us with a slightly different perspective on things.

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.
So the day comes for us to take our boy home.  We gather up our belongings, put him in a smiley face onesie and prepare to take him home.  We’re looking forward to our trip to Holland, we’ve never been there before.

Image: FreeDigitalPhotos.net



This entry was posted on July 1, 2012 by in Bea Family and tagged , , , .
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