In my office, I see numerous babies and children every day. It is a joy and I go to work with a smile on my face every day.
However, some things about my job are not so joyful. Telling a parent that their child has a chronic or permanent disease is not an easy task for anyone – but as hard as it can be for me, it must be even harder for that parent to hear. What you thought to be your life and future as a parent and as a family changes forever with such news. But your son or daughter does not: they are still the same child as they were before the diagnosis.
I could be talking about any number of diseases – a child having Trisomy-21 (also known as Down’s Syndrome) or another chromosomal abnormality, cerebral palsy, or autism spectrum disorder, just to name a few.
This article is meant to be of help to those parents who may have just found out their daughter or son has a permanent/chronic condition.
The main point I want to convey is that the diagnosis does not change the child. Life may have thrown you a curve and sent you reeling in a different direction, but it is not a dead-end. Your new reality is leading you somewhere.
Being of proud Dutch heritage, I will sometimes talk to parents about a poem called “Welcome to Holland”. It was written by Emily Perl Kingsley in 1987, who has been a writer for Sesame Street since the 70′s. She has a son with Down’s syndrome.
This is the poem:
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.
Now, go give your child a big hug for me. After all, they are my fellow Dutchmen, and I sure do love them!