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.
Emily Perl Kingsley
I first read that essay almost five years ago, back in the days when The Missus and I were still searching for meaning, wondering why we had been given this imperfect gift of a daughter with limitations and physical challenges.
I mean, why us? Why not some other parents? We did everything right. No smoking, no drinking. I took folic acid supplements. She took prenatal vitamins. We made every appointment. We read What To Expect When You’re Expecting. We picked out names. Bought toys and baby outfits.
And still we got a daughter with half her brain destroyed.
Meanwhile, the five-dollar-per-trick crack whore had a relatively healthy baby in the isolette right next to ours. A perfectly beautiful child, whose mother visited not once in the month she was there.
Something in that short little essay, not even four hundred words, resonated with me from the first moment I read it. I could see its parallels not only in fatherhood, but in my own career. It’s an eloquent primer on how to deal with loss and move beyond shattered expectations, a lesson in how disillusionment can blind you to the true value of the gift you’ve been given.
I’ve said before that I believe God gave me a special needs daughter because that’s the challenge I needed to become the man He meant me to be. I only hope that I’m on that path. God knows I stray from it often enough, but I try to keep plodding in the right direction.
And my daughter is my compass.
I’ve heard it many times, people complimenting me on what a good father I am. It honestly never occurred to me to be otherwise. I don’t understand the men who choose not to. I didn’t know if I could actually be a good father, but I meant to try.
Night Lightning Woman reflected on her blog recently on the little victories that replace those conventional milestones when a family is given this great gift of a special child. In it, a woman with a profoundly retarded child said:
“I don’t know why she was born the way she was…but she’s been such a gift. She has taught my whole family so much.”
Babs wrote of the institution she visited as a nursing student, a place where handicapped or retarded children were abandoned by parents oblivious to their gifts, parents who refused to see the beauty of Holland. Babs did, though.
Don Gwinn and his wife took in the twin boys of a troubled family member, boys who were developmentally delayed, and raised them as their own. They make their living teaching special needs children. Ask Don if he’d rather be teaching Honors English to sullen and spoiled teenagers instead.
Firefighter Girl is a single mother, raising a daughter and an autistic son on a paramedic’s salary. Even on Mixman’s bad days, I doubt she’d trade rocking him to the music of Miles Davis for a day in the park with another kid.
All of them have an appreciation for the beauty of Holland.
Tomorrow, I take my daughter to her first day of school. She’ll start pre-K with kids her age, kids without any physical limitations. I’m told that in all likelihood, once she finishes this year, she’ll be able to skip kindergarten and go directly to the first grade.
She’s going to make friends, and she’s going to encounter bullies, and she’ll probably meet a teacher or two who can’t see beyond the brace on her leg to the bright child who happens to wear it. I just hope she finds a few who challenge her mentally like her mother and I challenge her physically.
I think she’s going to take to school like a duck to water. Me, I’m going to try (unsuccessfully) not to cry, and pretend I won’t miss the time I’ll no longer have with her.
It’s okay, though. I’ve come to love it here in Holland, and I’m ready to show off my Rembrandt.
