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 feels 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 by 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. 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.
Welcome to Holland was written by Emily Perl Kingsley. I remember the first time I read this story, it was a long time ago, about 15 years. And it made so much sense; I knew exactly what she felt. I have a sister and a son with intellectual disability.
My son is now 26, and I’m often asked what its like to still have him living with us. And I tell them, we had to move again. This time, we moved to Neverland, the land where Peter Pan and all his friends cease to age, and so it is often used as a metaphor for eternal childhood.
For them, its a choice. For us, it’s a given. And yes, we have some magical moments, and we almost feel like we can fly.
We are surrounded by an amazing group of parents that support each other. There are some wonderful organizations that give our kids a chance to be part of the community.
But I know we will never be able to leave Neverland.
And I worry who is going to take care of him when I’m gone.
My beautiful, kind and loving son will always need us to be there for him and support him everyday, just like any child needs his parents.
And the pain of knowing that I will never see him graduate from Uni, experience first love, get married or have kids – that pain, will never go away.
But if I spend my life worrying about the ‘what ifs’ then I will never enjoy the magic of Neverland.
And so I chose to let go.
(This is an edited version of a speech delivered at the She’ela festival in October 2017)