I’M VERY GRATEFUL THAT MARIA SHRIVER SHARED OUR FAMILY’S STORY ON HER WEBSITE/BLOG.
MY MISSION: IT STARTS WITH A VOICE
By Amy Wright
On July 14, 2004, our third child was born. A beautiful, bouncing baby boy! We were overjoyed. Three days later the phone rang and our world was turned upside down. Our son, Beau, had Down Syndrome.
We held each other and cried, paralyzed with fear and overcome with sadness, afraid of the unknown.
Five years later we welcomed our fourth child, Jane Adeline, “Bitty”, into the world after a complicated pregnancy, where doctors had given her a twenty-five percent chance of being born.
Once again, the phone rang. Bitty had Down Syndrome, too. We wept. This time, however, they were not tears of sadness, but tears of joy. A second child with Down Syndrome. What a blessing!
Growing up, I had very little exposure to people with intellectual disabilities. In fact, until Beau was born, neither my husband nor I knew much about Down Syndrome or any other type of intellectual disability.
In the weeks that followed Beau’s birth, we were consumed with educating ourselves on every aspect of his diagnosis.What we quickly learned was that a diagnosis does not define a human being.
From that day forward we have been on a mission to promote the acceptance and inclusion of all people, especially those living with an intellectual disability.
Beau is now eight years old and Bitty is about to turn three. They are loving, intelligent, talented and funny. They are the youngest of our four children.
Lillie (13) and Emma Grace (12) are their incredible big sisters who lead by example and inspire their peers to accept and include others, too.
In March of 2012, I attended a support group meeting for parents of special needs children. The guest speaker was from the Special Olympics organization and the evening’s topic was the “Spread the Word to End the Word” campaign, which is a campaign to raise awareness of the hurtful effects of the word “retard(ed)” and encourage people to pledge to stop using it.
As I sat there listening to the speaker talk about the campaign, my wheels began to turn. What could I do to help people understand the hurtful effects of this word?
How could I help people understand that their use of the “r-word” affects not only those living with intellectual disabilities, but also the people that love them?
How could I share our family’s story so that our personal experiences could make a difference in the world?
The answer hit me like a freight train…through music. Both Ben and I grew up performing on stage and were fortunate enough to enjoy careers on Broadway.
While that chapter in our lives was exciting, it never felt fulfilling. Here was an opportunity to use our voices to inspire change. I left the meeting that night feeling as if my life had come into focus. I felt as if my life’s purpose had been revealed to me.
While I had been advocating for years, it was in this moment that I had finally found a platform on which to stand. This campaign mattered to me. It gave me a starting point to share my passion for the importance of the acceptance, inclusion and value of every human being.
With this new sense of purpose, my creativity began to flow. I began to write, not just words, but a song. 48 hours later, “It Starts With A Voice” was born. Our journey had begun.
We recorded the song and began planning ways to share it. We held a Benefit Concert in our hometown, where we premiered our new song. The concert was a family event where Ben & I sang Broadway music intertwined with powerful narration delivered by our two oldest daughters and our thirty-one year old friend, who has Down Syndrome.
The event raised thousands of dollars for the campaign, but more importantly it raised awareness. The focus of the evening was acceptance and inclusion where attendees were educated on the campaign and encouraged to make the pledge to “End the Word”.
The day after the concert the song became available on iTunes, where a percentage of all sales benefit the campaign. We wanted our song to reach as many people as possible and so we created a music video to share online.
The video was filmed at our home and gives viewers a glimpse into our daily lives, which brings me full circle to where this story began.
We are all scared of the unknown. Having a glimpse into the lives of people living with intellectual disabilities takes away some of that fear. Spending time with them changes your heart forever.
And so our journey continues. This summer our family shared “It Starts With A Voice” at several national conventions including the National Down Syndrome Congress and Best Buddies International.
Our plan is to continue sharing our song, message and story with as many people as we can in hopes that people will realize that we are more alike than different.
Follow our family’s journey on Facebook.