Today, Silas visited Baptist to have a procedure done in outpatient Radiology. For months now, Silas has been throwing up sporadically, profusely, and even violently at times. Our child is so new to us every single day, and most days we spend trying to figure him out still. The beautiful angel he was at birth is still that beautiful angel today – and he always will be. Not a moment has come where I feel regret that my child is who he is, but I will admit that this journey has been a hard one. It has been very hard because it is not the journey I envisioned. It is not the “normal” experience most people have when they go to the hospital, give birth, and bring their healthy baby home at some point. My child is happy and healthy. He is also sick. He has been sick – but he lives. He breathes. He makes progress. It’s just not the same type of progress. It is hard most days seeing the normalcy of other’s lives and wondering what things could have been like for Silas. But, when I read things like this story by Emily, it is so personal and so relative to what my family deals with on a daily basis. I know a lot of people can’t relate to us, but this may help. A wonderful, kind nurse in Pediatric Recovery spoke with me for a while and she shared this with me, asking me to also share it with others. So here you go, I hope you enjoy.
A Trip to Holland
By Emily Perl Kingsley
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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. The loss of that dream is a 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.