Today is the last day of Down Syndrome Awareness month. It’s also a little over a year since we found out about August’s diagnosis. Today, something reminded me of a simple poem that was so meaningful to me when we first found out about the diagnosis – “Welcome to Holland”. Dozens of people – mostly strangers – sent it to us in the weeks following his diagnosis. It’s about learning to accept your new journey when you find out you’ve had a child with a disability. I’ve included it at the end of this post.
People are able to accept a child’s disability at their own pace. Some people seem to do it almost effortlessly, immediately. Others struggle for some time to accept that that the child they have is different from what they had dreamed about. Others still are never able to accept a diagnosis and struggle to bond with their child. Some don’t feel like they are able to raise a child with a disability, and make an adoption plan.
It didn’t take long for Steph and I to rally and accept August’s Down syndrome. But, we were fortunate. August was healthy. He didn’t need a feeding tube. He didn’t need open heart surgery. He spent only an hour in the NICU. I could not possibly sit around feeling sorry for myself when other little babies with Down syndrome were struggling, not thriving, and even dying. That felt disrespectful.
I think it was also easier for us to accept August’s Down syndrome because we had the immense joy of having two babies. In terms of the poem, one took us to Holland, and one took us to Italy. I love them both equally, and consider myself richly blessed.
Here’s the beautiful poem that meant so much to me in those early weeks and months.
Welcome to Holland
copyright 1987 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.