I had my first baby on a Thursday in 1985. Only my family
and closest friends welcomed his arrival, once they recovered from the shock.
In 1985, people stood in line to see movies like “Back to
the Future”, “Rambo”, and “The Color Purple”. They listened to Madonna’s “Like
a Virgin”, and a bunch of prominent musicians got together to make the hit
single “We Are the World”. Coca Cola introduced Cherry Coke. Ronald Reagan was
sworn into office for his second term and Billy Joel married Christie Brinkley.
These events were celebrated to varying degrees all over the
world.
Meanwhile, on that Thursday in 1985, my husband went in
search of information about Down syndrome at the public library where he found
three books, all terribly outdated and depressing. He brought them to my
hospital room, apologizing because he could find not one hopeful book to make
it all better. If he had been looking for movie reviews, pictures of Christie
Brinkley in her wedding gown, or the logistics of getting forty-four famous musicians together on the
same night to record a song, his search would have been markedly more
successful .
A week later, we visited the home of Emily Perl Kingsley,
author of “Welcome to Holland” and writer for Sesame Street. Emily is the mother of Jason Kingsley, the first
child with Down syndrome to appear on the celebrated show. She shared her
experiences with us and held our baby with such tenderness. Jason, almost
eleven at the time, arrived home from school and took our son’s tiny hands in
his. “Hi baby,” he cooed, “Welcome!” His presence taught us much about what was
ahead for us. Emily and Jason were our first teachers. We’ll always be grateful
to them for giving us the positive messages we needed to hear.
The intervening years have brought many encouraging changes
thankfully, and individuals with Down syndrome are welcomed into the world more
readily and in celebratory fashion. We still have a long way to go, but how
wonderful it is to witness events like World Down Syndrome Day, celebrated
every March 21st! (The date 3/21, is representative of the third
copy of the 21st chromosome that results in Down syndrome.)
Imagine that! All over the world people are celebrating our
children. What is happening is incredible and long overdue. In December, 2011,
it was decided by the General Assembly of the United Nations that March 21st
would be officially celebrated in 192 countries starting in 2012.
The General Secretary Ban Ki Moon, declared, “On this day,
let us reaffirm that persons with Down syndrome are entitled to the full and
effective enjoyment of all human rights and fundamental freedoms. Let us
each do our part to enable children and persons with Down syndrome to
participate fully in the development and life of their societies on an equal
basis with others. Let us build an inclusive society for all.”
New moms and dads can rest a bit easier today, knowing they
have access to the information they seek about their children born with Down
syndrome. They and their children can look forward to a life rich with
opportunities and a more positive outlook.
Who has made this possible? Why, the moms and dads who came
before them! They have helped to shape a more welcoming world. Margaret Mead said, “Never doubt that a small
group of thoughtful, committed citizens can change the world; indeed it’s the
only thing that ever has.”
The work is far from complete. We have “miles to go before
we sleep”; we must never be complacent, but continue the work others have
begun.
I raise my glass to all of us, to our children, to a better,
more informed world, one in which a new mother and father are surrounded not by
untruths and frightening outcomes, but by the good news of the beautiful life
ahead.
Happy World Down Syndrome Day!
