Welcome to Holland
Written 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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. 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, 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.”
The pain of that will never, ever, go away, because 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.
I'm not going to candy coat this. Having children with special needs is a daily struggle. Sometimes its big meltdowns and missing out on family activities because they can't tolerate them. Sometimes its the simple things like using the bathroom properly. It's the fear of you getting older and not being able to help them anymore. Its the worry of what will happen when you're gone. Its the lack of programs and therapies available to them. Its IEP meetings, therapists, and developmental pediatricians. It's making friends and watching them grow and begin to see they are different. Its the stress is causes your a typical children. But because of these two boys I have learned so much. I am the best version of me because of them. They are inspirational and give me the drive to help them and others like them as much as I can. Finding a cure would obviously be life changing and I can only hope that I might see it in my lifetime. Learning more about FXS could help in finding medications or therapies that would increase the quality of life. So if you can't donate please please share