Last weekend, I headed north to speak at the Syracuse Gigi’s Playhouse Gala. As I expected, “speaking engagement” quickly transformed to soul experience, and I put another pin on the map of places I’ve been that have changed my heart.
There was snow for a little boy who had never seen it (he only liked looking at it from the inside)…
…and the warmest welcome from two friends I made last year at the I Heart Faces Conference. Two years ago, Heather Rodriguez listened to a little voice in her heart that said she could make things happen in the Down syndrome community even though she has no family members with Down syndrome. She got involved with Syracuse Gigi’s Playhouse, started taking photos for them, made lasting friendships with many of the families there and joined their board this year. I loved watching her at Gigi’s. She hugs and high fives and treats everyone around her the same. And her friends with Down syndrome know it. They know she doesn’t water down her hilarious slightly inappropriate jokes for them, and they love her for it.
Jennifer Tonetti-Spellman (dude, her photography!) drove 4.5 hours from the city for a cozy sleepover that served as the perfect prequel to Friday and Saturday night’s festivities.
photo courtesy of Jennifer Tonetti-Spellman
Gigi’s Playhouse is a series of Down syndrome achievement centers that serve both children and adults and provide educational and therapeutic programs at no charge to families. There are currently 17 Gigi’s Playhouse facilities–16 in the United States and an International Center in Mexico.
I walked into the pre-gala party at Gigi’s in Syracuse Friday night and was immediately overwhelmed by the support and community present. So many families showed up, both those who had a loved one with Down syndrome and those who volunteer and bring their children to build an inclusive community. And Kayla, the assistant site coordinator who has a part time paid position at Gigi’s, blew me away with her professionalism and pride in her job. She gave me a tour, brought me a water, showed me where I could hang my coat, watched Dash while I took pictures and quickly jumped in when I asked permission to post a photo: “Oh, they all signed media photo release forms. You’re fine.” She casually mentioned that she has Down syndrome and that she also has her driver’s permit, and though that fact shouldn’t be a big deal, it is to me. I’m only four years into this. “You’re very inspiring, Kayla,” I told her. “Thank you. I can’t wait until you meet my mom and dad,” she answered.
This place is building such a supportive community, and the energy that filled those walls Friday night could have illuminated a small country. I watched while parents hugged each other and made themselves at home while kids ran to play in their safe place with both familiar and new friends. I saw Mila jump into the ball pit, watched a buddy help Quinn climb the rock wall and smiled when Ava tucked some dolls in her shirt to nurse her babies just like Nella does. I hugged Carrie who felt like an old friend, and when we realized we share a mutual friend at the NDSS, we took a selfie and texted it to her. “I wish I was there,” my friend texted back. I listened as Gigi’s enthusiasts told me about all the programs they are running–the tutoring, the yoga, the literacy, the sign language, the dance. It’s their very own Field of Dreams. If you build it, they will come.
And the Gigi’s Playhouse Gala?
Where there is dancing, there is love.
The love was big. You don’t forget nights like that. Dance moves like that. Hugs like that.
(gala photos, courtesy of Heather Rodriguez)
And a little part of what I shared, something I’ve been meaning to write. A letter to my old self.
Dear Old Me,
You’re scared, aren’t you? I get it, and it’s okay. I know you love her, and you didn’t expect that upon kissing those cheeks for the first time, you’d also have to carry the weight that she’s going to have a lifetime of challenges. I know you want to take them all away from her, but you can’t. This isn’t exactly what you had planned, but sooner or later you’re going to realize that you can’t plan everything, and those unexpected things in life often turn out to be the best things that ever happened.
Forget about what you think you know about Down syndrome and start thinking about what you want to know about Down syndrome. The future that you hope she has. Never lose sight of that. In fact, find other people who have that same future in mind. Join forces with them. Make it happen.
I know you want to run home and shut the doors right now–close yourself off with that baby and pretend the rest of the world doesn’t exist. Take your time. But know that the world needs you and your voice, and the world needs Nella and her friends. You’re not alone. You’re going to meet people soon who will amaze you–people who are building roads where roads have never been. Learn from them. Help them.
And see that ceiling above you? Kick it out. She’ll never fly above it if you don’t.
You’re going to be fine. Nella is going to be fine. And no, it won’t always be easy. But what’s really easy in life? Certainly not the most beautiful things.
To everyone who is part of this community and a part of this incredible story we all are telling (that means you and you and you)–what a privilege it is to do this with you, to learn from all of you, to be inspired by your drive and your ideas and the way you are loving people and knocking out that ceiling.
And sometimes, a good church “Amen” is how it needs to end.
Thank you, Syracuse, for inspiring me. You’ve built something amazing.
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