
It took us almost ten years to understand the wisdom in the title
of the TV series “Life
Goes On.” Our son Nick had not been born when the show was a viewer
favorite, and we
did not get to know Corky, Chris Burke’s character with Down syndrome,
when it first
aired. Had we been part of the original audience, we suspect we
would have better
understood that, for families affected by Down syndrome, life goes
on. And indeed for
us it has.
We were speaking with our 13 year old daughter Lauren about Down
syndrome recently,
and she summed up our family experience pretty well: “I’ve known
[Nick] his whole life,
and Down syndrome is not new to me. He is just my brother.” When
asked if she learned
any lessons watching him grow up she replied, “I know some things
are harder for him,
but he’s just a regular kid.”
We have known and loved our regular kid for a decade. We’ve grown
past fear over the
diagnosis of “Down syndrome” to recognize it for what it is – a
label that defines his
genetic condition, not him. We’ve stopped identifying difficult
behaviors as “Down
syndrome moments” and started accepting them simply as part of Nick’s
childhood.
We’ve matured from viewing Down syndrome as something in him that
was broken, into
seeing Nick as someone whole, strong-willed and captivating. We’ve
had the
opportunity both to teach and learn from Nick. While we teach him
how to survive in
today’s fast-paced competitive world, he teaches us that life isn’t
all about being first,
best, or most powerful. It is really more about the rewards and
joy that flow from loving
each other. At the end of the day, he is right.
Our life goes on . . . and it truly is much better for the opportunity
to know and love Nick.
Does Nick’s Down syndrome present challenges? Certainly. But with
those challenges
come moments of unparalleled perspective and bliss.
Thank you for joining us tonight as we celebrate people with Down
syndrome. We hope
you enjoy this evening as much as we will.
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