One of my amazing friends whom I have never actually met in person is going through the very difficult loss of a little boy with spina bifida. Years ago I started an international support forum for people with spina bifida. I met my friend here. We emailed back and forth for years, we kept in touch when I had to shut down the board temporarily, I sent her stuff to help her son that they do not have in Northern Africa, we ‘speak’ weekly No, thank God, it was not her son. My friend is a support contact in her own right in her area where information about spina bifida is not so readily available. She is a source of inspiration to mothers all around her area who come to her for help and advice. It was one of these little boys that she has helped and loved. She remembered this poem (story?) and asked me to send it to her for the family. It reminded me that I should share it again for all the moms (and dads) for whom the birth of their child did not turn out quite the way they expected. It is one of my favorite stories of all time and it makes me smile and cry every time I read it.
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 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.”