WELCOME TO 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 wrote way back before Ben got his transplant about what this poem might mean to me. I was thinking that life would change so much whether or not he got his transplant. I was so scared back then. Not knowing what was in store for us. We didn't know if he would be able to eventually be medically managed. Would he have a transplant? What would transplant life be like? Would he ever be able to do things normal kids are able to do? It was all very scary. We had taken home this perfect little boy. Then at 1 mth old, it all changed. Our world was not the same. We had detoured away from Italy somehow and landed in Holland. None of this was anything like the life we expected to live with our kids. And we were terrified. Now that we are on the other side of transplant, I can say, while it is disappointing that we did not get to go to Italy, I can appreciate all the good things about Holland. Ben is doing so well with his new heart. Yes, there are meds, and therapies. We never had to deal with that with our girls. Yes, we have to be ultra careful with any illness, whereas with our girls, if someone had a cold, it was no big deal. Obviously, we didn't go out of our way to bring them around people who were sick, but, if we found out someone was sick after we saw them, well life goes on. We also have so many more medical appointments for Ben than I ever had for the girls. So, there have been disappointments on the way. But, also some very good things. If it weren't for Ben needing to stay out of daycare, Joe wouldn't be spending nearly as much time with him during the day. Each little milestone is a complete joy to see because for a while there, we didn't even know if we would see Benjamin ever open his eyes again. The girls are so good with Ben and while no child should have to know the names of so many meds, they love helping us with all of Ben's meds. I also have met some really great people thanks to being a part of a special group of moms with heart transplant babies. And while, I don't think anyone WANTS to have their baby have a heart transplant, I am so grateful for these friends and having them as a support system of people to lean on that have been here before. So, while we are not in Italy, and we are not having the life we imagined, we are loving all of the little joys and good things that this life is bringing us. And Holland is turning out to have some pretty great things.