First Comes Love

Mental Health & Disabilities
Karin Melberg Schwier and Dave Hingsburger

In 1974, my husband was told his newborn first child was a "mongoloid." The first image that went through his mind was the old blue Noble School bus that rumbled through his neighbourhood during his childhood. Children with disabilities climbed into or were carried to that bus as it headed to a segregated school in Indianapolis. As the doctor's words sank in, he remembered the round, vacant faces pressed against the windows of the old blue bus, staring out at a neighborhood which they were not part of in the 1950s. In the hospital Rick, scared to death, held his days-old son. He could not know how this child would change his life, but he decided then that James Christopher would not become one of those faces peering out at a community that was not his own.

It was a determination reinforced by my husband's grandmother. Theodocia Liming, in her eighties at the time, was someone he'd always viewed, with some reverence, as tough, strict, and a little scary. She is remembered for the time she sat at the piano at a Christmas gathering and sternly played for the family the musical selection she wanted for her own funeral. No one ignored Grandma, so everyone sang along, "Thou art the potter, I am the clay."

"Take that baby home and love him," she said in the spring of 1974. "God gave you this baby just like any other, so you just love him and raise him. He won't be that different from any other child. You just go home and get on with it." Grandma had always been quite unapologetic about life since her husband was killed, leaving her to raise six children on her own. Her frank words set the stage for what Jim's parents expected of him. Time and time again we learn, in all things, expectations make all the difference.

 

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Emily Perl Kingsley is a wonderful parent from New York, whose writing career has included long stints with "Sesame Street" and a semi-autobiographical movie, Kids Like These . Her son, Jason, who has Downs Syndrome, and his friend Mitchell Levitz, wrote their own book about growing up called Count Us In . Emily is often asked to speak to parents about the experience of raising a child with a disability. She tries to help people "who have not shared in that unique experience to understand it, to imagine how it would feel." She makes that happen by telling a story:

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. Michelangelo's 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 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 awhile 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.

 

First printed in Inside I'm Dancing.
Used by permission from MCC Saskatchewan.