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.
–c1987 by Emily Perl Kingsley
Now, I’m not a parent of a child with a disability. I am a child with a disability. I will never walk without pain. I will never walk without a limp that is now corrected with crutches. I will never live a day in my life without pain. It’s not the life I saw for myself as a child.
As a child, I dreamed BIG, as all little girls do. I wanted to grow up to be a tractor driving librarian (shut up! it wold be AWESOME! I’d drive a tractor to bring library books to kids stuck on farms!). I’d chase my dreams overseas. I’d sing and laugh and I would have a wonderful life. I had my health problems as a child, but no one knew they’d grow into what they are now. No one knew what I’d be facing now.
But yet, at the same time it offers things that I wouldn’t have otherwise. It offers chances I wouldn’t have otherwise. If I didn’t have these disabilities, I don’t think I’d live life the way I do. I know my outlook wouldn’t be the same.
There may be nights, like tonight, where I succumb to tears, hot, bitter tears rolling down my cheeks as I lean against the shower. As the grief of losing so much – parents, health, friendships, lives… hits me full force. As I shake and weep, tremble and cry. Alone – with no one to hold me as I cry and no one to tell me it will be okay. I have my breakdowns too.
And I can’t say that everything will be okay. I can’t say that I wish I was in Italy instead of Holland some days. I can’t say that my heart, my spirit, my very flesh doesn’t ache, because that would be a lie. But yet… Holland is where I am. And it’s where I’m meant to be, for reasons I will never understand or I’m not even sure I want to understand.
And so, I live with what I’m dealt, grateful for it in some strange way.