I received an email yesterday from the new parent contact at my local Down Syndrome Association branch. We joined a few months ago so that we could meet other families of kids with DS. In her email, she asked if there were any members that had a story they would like to share for their new parent information package, which is given to new parents when they have a baby with DS at the hospital. I sent her a link to my first blog post, but her request really got me thinking. I don’t know if I can write something concise enough for her particular request, but I wanted to write out what I’d want to know as a new parent, in case anyone stumbles across this blog and could use my words and experience.
To start, I’d like to let you all in on a nice little poem that is currently included in the LDSA new parent package. It’s called “Welcome to Holland” by Emily Perl Kingsley. Basically she wrote it in the 80s on her experience with having a child with special needs.
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.
When I first read this little poem, I couldn’t get through it. I sat there on the words you’ve landed in Holland and there you must stay. There I was. Smack dab in Holland. And I couldn’t leave. It wasn’t anywhere I had pictured myself. I didn’t want to be there. I couldn’t read the rest. I put that poem back in the folder and forgot about it.
I tried to read it again when we were discharged from the NICU and I had gone through all the papers we had received and was reading over some of the information. Again, I didn’t want to be in Holland. I put the poem back again.
Finally, a few weeks later, I got the courage to open up that folder that said LDSA on it. I took out the poem and started to read. I got to the part about the windmills, and the tulips… and a crazy thing happened. I was there. I wasn’t in some disease-ridden no-man’s land. I was in Holland. It wasn’t where I wanted to be originally. But I looked at Thatcher. And he wasn’t what I had anticipated. And he was beautiful.
So, new parents. Maybe it takes you a while to read the whole poem. But you’ll get there. And when you get there, you will probably cry when you read it. That’s okay. I still do. Except that at first, I cried because I didn’t want to be here. And now, I cry because it’s so amazing.
The point of the poem, and the point of what I’m saying, is that it’s okay to be disappointed. It’s okay to cry. This isn’t what you expected. You expected the prom queen, the valedictorian, the PhD. You expected the kid that would reach every milestone early and be walking by six months. You expected a healthy baby. And, more than likely, you didn’t get any of those things. Instead, you got a trip to the NICU. You might have gotten a surgery or two. You might have a congenital heart defect on your plate, or hearing problems, or a g-tube. And it’s really easy to look at your newborn baby and see them as a disconnected medical diagnosis in that incubator. You might hold their hand and feel love, but feel disconnected. And that’s okay. You will get through this. You will get to know them. You will see them look at you with love in their eyes, and you will be seeing those tulips in Holland. When they have their first smile, you’ll see the windmills gently turning in the breeze. They will fall asleep on your chest with their little arms wrapped around you, and you will know that Holland is exactly where you want to be, no matter how you got here.
But the trip there is hard. And there are bumps along the way. And that’s okay. Just keep looking ahead for the tulips. Don’t close your eyes and pretend they aren’t there. Do what you have to do. Cry. Call your best friend. Cry some more. Research Down Syndrome. Hold your baby, even if there are tubes and wires hooked up to them. Grief is a process; there are hills and valleys to it. One day you will think you are okay, and the next you will hear about somebody else’s child who is crawling and your son or daughter is barely rolling over. It’s fine to grieve about it, as long as you keep looking ahead. Your child will get there, it’s just more of a scenic journey. They might have to work a little harder, but it will be so much sweeter in the end.
So…. Welkom in Nederland, mijn vriend.