We found out something was wrong with our baby on January 7th. I went to work that morning. I was pretty nauseous on my drive in and threw up in the parking lot as soon as I put the car in park. I worked about 6 hours and then rushed home to meet Tommy so we could go find out if we were having a boy or a girl! My brother came over to watch Jack while we went.
We didn’t even have any second thoughts. Had never had any worries or concerns that something might be wrong. That is until moments before the ultrasound. The sonographer took us back and sent me to the bathroom. As soon as I left my urine sample, I had the thought “to God be the glory”. It honestly came out of nowhere and I found it surprising. But then I said a quick little prayer for our little baby and went into the dark room to see him or her. And well, you know the heartbreak, the diagnosis, the outcome.
That afternoon my sister came by. She was excited to find out what we were having. We told her what we knew, and she found a poem for us. She wanted to encourage us that having a child with a disability wasn’t bad. We agreed with that. In fact, things looked so bad at our appointment that we were pleading with God to have a baby with downs syndrome with multiple defects that could be repaired. We knew that was our best case scenario, and we were welcoming it. Unfortunately, we got our worst case scenario.
I want to share this essay. Maybe it will help someone else. And while we didn’t end up with a living child with disabilities, but rather a baby with a lethal chromosomal syndrome who survived a couple of hours, it still kind of applies to us. We expected to have a normal pregnancy and baby just like all our friends. We expected to bring home a newborn. We expected to raise boys 2 years apart. We planned and prepared and dreamed those things. We always thought we were going to Italy. And instead… we went to our own version of Holland. To a place where terms like perinatal loss are a part of normal vocabulary, where visiting the cemetery is a frequent activity of our 2 year old, where things like college funds get traded out for tomb stones. It hurts real bad, and it’s a huge disappointment, but I wouldn’t trade it for Italy if it meant never having had Gabriel. We adore our baby. And while our path in life is hard I know it is full of butterfly bushes, hydrangeas, dogwoods and Japanese snowbells that will bloom every year on Gabriel’s birthday. It’s full of people we would have never known – those who lost before us and those who lost after us. It’s full of grace and hope and faith and love, and those things are much easier to see in Holland than in Italy. I’ve despised the thought of entering what Holland represents to us since January, but eight months later I find myself starting to notice the beauty of Holland. I’m not saying it’s beautiful – not yet – and most days I’d still rather be in Italy with Tommy, Jack, and our Gabriel. But we are here to stay and we know that, and we must choose to appreciate the beauty of the land we now live in.
WELCOME TO HOLLAND
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.