Sharing a love of music is one way in which individuals with Williams syndrome excel, as ACM Lifting Lives Music Campers showed when they performed with County Music artist Hunter Hayes during the recent Special Olympics World Games in Los Angeles (LA).
The invitation read:
Dear ACM Lifting Lives Music Camper,
It is hard to believe that it is our 11th year of Music Camp at the Vanderbilt Kennedy Center. Our partnership with ACM Lifting Lives has given us some amazing opportunities and a way to elevate all the things that people with Williams syndrome CAN do. We have been asked to sing with country music artist Hunter Hayes at the Family Day at Special Olympics. The performance will highlight all the amazing things that people with disabilities do every day. We want to show that we can light up the world with our song. I hope you are as excited as we are!!
The hugs, the laughs, the long, loud stories, the tears, all came out with such ferocity because it had been long, too long since we had felt this way. To be known, understood, accepted, and loved just the way we are. Those with Williams syndrome just want those things. To not have to explain, to be known just by a gaze or touch, to be perfect, just the way we are. To know that under those happy, smiling faces are people just like me who know how anxious and worried I get flying, to travel far from home, to not know exactly what will happen next. To know that the beating heart across from you is just like yours: that it has scars on it from past surgeries, past hurts from loving too much, too hard, too often. To look into the starlight eyes of someone else with Williams syndrome is just like looking in the mirror. It feels like home.
The three days flew by. There were late nights in the lobby talking and laughing and soaking up as much as our hearts could hold to take it back with us. The lunch that lasted into dinner because we didn’t want it to end and waiting for the elevators to open to see what new or old friend would get off next. The breakfasts that started as soon as the hotel buffet opened, dragging our sleepy parents down to sit at tiny tables for hours and drink coffee because we could not bear to miss a moment that could be spent with our friends. You couldn’t imagine anything so perfect, so true. It feels like home.
The day of the performance, we were picked up by a huge limo tour bus with our own driver, like we were superstars. We walked in the beautiful LA sunshine until it was time to do our sound check with Hunter Hayes at Grand Park. We sat around the big oak tables in City Hall and talked about what we liked most about each other. We shared our deepest fears from the past and biggest hopes for the future. We were safe and loved. There was nothing we couldn’t share with people who had our heart. It feels like home.
Everywhere we went, people smiled at us, waved at us, and greeted us with hugs. We went onto the stage with Hunter Hayes, who was so gracious, kind, and accepting. He greeted each one of us with a hug and a smile and thanked US for singing with HIM. Hunter made sure that the words of our very special song “Heart to Heart” could make it into the ears and hearts of every athlete from every place in the world. When the lights dimmed as the LA sun set, we were lit up by the bright lights of the stage. As watched the athletes with their flags, their pins, their family and friends at their side, walk over the hill and get into the seats, we got ready to take our place on the stage. After a beautiful introduction, we walked onto the stage, took our places, and got ready for the sweet violin that began the song and drifted into the crowd.
We sang our hearts out: In my eyes, do you see something different? Well, tell me what it is that you see. I believe you’d understand me better, if you’d take the time to stop and look at me. Heart to heart, we’re all the same. We all love to sing and dance and laugh every day. Soul to soul, I’m just like you. I have hopes and plans and dreams just like you do. I’ll always hold you close no matter who you are. Heart to heart. Music is a powerful connection. It’s a part of you, yeah, it’s a part of me. A song can knock down walls and build some bridges and take us all where we want to be.
I couldn’t see the standing ovation because I had tears of joy in my eyes, and I kept hugging everyone else on stage and didn’t want it to ever end. That moment was so perfect, with people from all over the world, swaying softly, beaming with such pride, listening with their hearts, and knowing that it just felt like home.
Elizabeth Roof is senior research specialist for the Williams syndrome and Prader-Willi syndrome research projects led by Elisabeth Dykens, Ph.D.
The Vanderbilt Kennedy Center thanks the Academy of Country Music Lifting Lives for its support of the ACM Lifting Lives Music Camp and this memorable trip, thanks Hunter Hayes, and thanks Special Olympics.
Pictured top of page: ACM Lifting Lives Music Campers performing with County Music artist Hunter Hayes during the recent Special Olympics World Games in Los Angeles. Photo courtesy of Academy of Country Music Lifting Lives.