A friend gave me a subscription to Parents Magazine before
our daughter Penny was born. I remember the headline of an article that arrived
when she was six weeks old: “Will Your Child Be Tall? Athletic? Intelligent?” I
answered, “No. No. And no.” I threw the magazine away.

Some good came of my mistaken belief that a baby with Down
syndrome had severely limited potential. It forced me to consider what it meant
to love our child exactly as she had been given to us, rather than according to
an abstract image of the child I deserved. It forced me to reconsider my
notions of fullness in life, to discover the value of every human being
regardless of IQ, height, weight, or motor ability.

And yet, I look back on my attitude with some mixture of
bemusement and dismay. A few months after Penny was born, I started to hear
stories about individuals with Down Syndrome who had surpassed expectations. I
heard about Chris Burke, who played a leading role on the TV series, Life Goes
On. I read about Karen Gaffney, who swam Lake Tahoe, a feat, in the words of
one admirer, the equivalent to running three marathons. Later still, reading an
article in TIME, I learned about Temple Grandin, a woman with autism who has
earned her Ph.D. and is lauded as an expert in understanding animal behavior.
Most recently, Aimee Mullins, a woman whose legs were amputated as a child, has
come to my attention. Mullins is a model, an athlete, and a spokesperson for
the rights of individuals with disabilities.

These individuals have contributed to a transformed
understanding of what it means to be “disabled.” They have challenged me, yet
again, to reconsider my expectations for our daughter. I now say, Who knows what she might do? instead of
assuming that I know her limitations already. But sometimes I wonder. Are these
men and women exemplary? Or are they exceptional? Are they the Oprah Winfreys
and Bill Gates and Michael Jordans of their field? Is it silly to think of my
daughter becoming like one of them? Is it harmful? 

On the positive side, Chris Burke, Karen Gaffney, Temple
Grandin, and Aimee Mullins offer us the face of possibility. Their stories of
hope, hard work, and achievement against the odds, against the doctor’s
predictions, against societal expectations–their stories have a chance of
becoming our children’s stories. Their stories teach us to believe in our kids.
Their stories teach me not to be so quickly dismissive of questions like those
posed on the cover of Parents Magazine.

And yet, their stories offer a caution as well. Holding up
only exceptional individuals as possibilities plays into a cultural narrative
that values achievement over character and individual accomplishment over
relationships. What if our kids don’t measure up? What if Penny never wins a
medal at the Paralympics? What if she never speaks in front of a crowd? What if
she never breaks any records or surpasses the predictions for a child with Down
syndrome? If she never does any of those things, she will remain who she is:
our daughter, a great gift to us and all who know her.

Around the same time I started reading stories about
exceptional people with disabilities, I also met a man with Down syndrome named
John. John is in his late thirties. He lives alone. He goes to work a few days
a week with the help of an aid. He spends much of his free time at the local
fire station. He doesn’t talk much, and, as far as I know, he hasn’t
accomplished anything extraordinary. But when we got together, he sat with
Penny, who was about a year old, and made her giggle. He told me about the
things he loved: music, his friends at the fire station, his parents. He told
me about his girlfriend, and showed me pictures of himself as a child. He was
kind, courteous, and humble. And, having now met a number of adults with Down
syndrome, I would not say that John was exceptional. But after spending an hour
in his house, I had the sense that he, an ordinary man with Down syndrome, had
achieved many of the things I would want for our daughter.

I’m glad that Penny is growing up in a world where there are
men and women with disabilities who have achieved extraordinary things. And I’m

glad they get lauded for their accomplishments. But I’m even more glad that we
know people like John. Our daughter may or may not grow up to write books or
run marathons or go to college. I think I’ve learned to let go of those types
of expectations and wait to see who she becomes. She may or may not grow up to
be exceptional, but I hope she will grow up to be an example of the potential in
every human being to live a humble, loving, and gracious life. To paraphrase
Martin Luther King, I hope she will grow up and be measured, not by the list of
her accomplishments, but by the content of her character.

This essay originally appeared in Bloom Magazine. 


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