Monday, March 24, 2014

World Down Syndrome Day

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went in search of information about Down syndrome at the public library where he found three books, all terribly outdated and depressing.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!