***This is one in a three-part perspective on the #rockinNDSSstudios experience with the National Down Syndrome Society. To see more of this journey, visit my co-photographers Nicole and Sherri who are also sharing their adventures in blogs today. ***

 

 

Months of planning, new and old friendships and a gathering of wild imaginations and big dreams came together earlier this month in what will most definitely be remembered as one of the absolute highlights of both my professional and personal stories.

A little background and then a lot of fun memories:

In mid-October I shared my friend and newborn photographer Nicole Starr’s donation of photography sessions to families affected by Down Syndrome with my never-met-but-feel-like-true-friends friend Sara Weir, President of the National Down Syndrome Society. I thought it was a long shot and I thought I might be bothering with Sara’s already busy schedule, but lo and behold, Sara requested a conference call with us. We were excited, but puzzled. Perhaps, we thought, Sara had some connections in Nicole’s Boston area for some well-deserving families to receive photos.

But Sara is a dreamer. A big dreamer and a big believer. And that’s what makes her and the NDSS so fabulous — they’re almost afraid of the word “no” when it comes to advocacy, human rights and possibilities and futures for those with DS.

She offered up her idea that maybe, just maybe, we could all collaborate for a NYC rock-and-roll-themed photo shoot to use for the NDSS annual fundraising Gala, held in March at BB King Blues Club. The rest of that phone call is a blur because I felt such extreme emotions overtake me.

When Nicole and I hung up with Sara (after agreeing that YES YES YES we were in!), we of course called each other and simply alternated between shocked silence and excited squealing. And we took off running from there. We joined forces soon after with Kandi, Kristie, Maddy, Amy and several others from NDSS. There were conference calls and Pinterest boards and model calls on Facebook and then e-mails, phone calls, Excel spreadsheets and travel plans.

Sherri, a mom to a daughter with DS and Nebraska-based photographer, volunteered her time and efforts, too.

Before we knew it, a sunny, mild December Monday morning arrived.

I sat on my seat on the plane, smiling out the window as I texted a picture of the plane to my aunt for the kids to see. I half-wanted someone to ask me where this plane was taking me, just so I could answer, “To the most INCREDIBLE opportunity I’ve ever been given! You would not believe how lucky I am!”

At the NDSS New York offices on the 600-block of Broadway in the heart of the NoHo neighborhood, it went from a big dream to a huge reality. We tested our lighting and camera settings, took a tour and scoped out corners. Poured some coffee, grabbed our lenses and for about the longest five minutes, just stood in our own little quiet worlds. Then the first models arrived, hair and makeup began their work and it began!

We had more than 200 volunteer applicants and wound up with more than 50 models. We represented just about every genre and style of music and every age between infant and 50 years old. Men and women, boys and girls. Quiet and shy and confident and strong.

You know how they say, “It’s the little things in life”? It is. Truly.

I felt so many powerful moments.

Many of my 15-minute sessions were outside in a side street off of Broadway, with cobblestone and wrought iron gates, graffiti, cool staircases and a true NYC skyline and vibe.

I remember crossing over the cobblestone with one of my older models holding my hand, tenderly gracing her feet over the bricks as she told me in one breath about her recent ankle surgeries and a trip abroad for advocacy work.

A teenage boy was painfully shy and his parents warned me he may not come out of his shell. But just a couple of minutes later, I saw the most beautiful smile. His mother wrote me that the photo shoot has changed his confidence and self esteem.

My Billy Joel sang “Uptown Girl” while acting smooth on the front steps of a nearby business. My Elvis Costello suggested wonderful poses and locations along the street and nodded, “That looks so good!” when I showed him the back of the camera.

I received hugs and got so many hand squeezes. I took selfies with my new friends and just couldn’t stop smiling.

(Photos below are camera phone behind-the-scenes shots:)

 

It wasn’t just the rockstars. It was the tough Momma who gracefully balanced her other children with love and attention. The Dad who wasn’t afraid to make a fool out of himself to get his son to loosen up in front of the cameras and strangers. Proud aunts and grandparents and friends, too. Big sisters who helped little brothers and all of those behind the scenes, holding fans and lights, grabbing coffees, allowing flexibility and not worrying about who won’t wear their wig or whether or not glasses are part of the costume. Some of the best moments were when I wasn’t holding my Nikon — instead I was blasting and dancing (poorly) to some Taylor Swift or asking about hobbies and hometowns and listening, truly listening.

Moms who learned I have a son with Down Syndrome offered resources, phone numbers and the best of bear hugs. The kind that say “I get it” and “Our lives rock!”

There was talk about fighting for the right classroom, open-heart surgeries on sweet babies, scars from tubes and so many battles that are fought on a daily, hourly basis. But there was no complaining. There was no ‘why me.’ Over the course of two days, we had one common purpose with some sunshine and a lot of love. We created beautiful art with our experience and equipment and all of those big dreams. But our models and their families are the reason for the success of those days. Their patience and open-mindedness and their incredible positivity.

 

I was keeping it together pretty well.

And then, in the most unlikely of moments, it all hit.

Nicole was photographing our little Buddy Holly and he needed a little encouragement from his big sisters and Mom who were watching from the back of the room. They were great — a little dancing and some laughter and he was ready for his time in the spotlight. But the moment that truly defined his time as a rockstar? Not the solo photo that Nicole nailed in the camera of him with a guitar and a little black suit. It was the instant before when he stood in the center of four of his family members, all of them grooving and giggling. THAT, is what NDSS celebrates and strives for and that is why I think we all wanted to be a part of this. That reminder of hope and beauty. Of a life that is absolutely remarkable. A life lived like a dance party.

But, I couldn’t put that in words, and I quietly retreated and broke down in tears in the hallway.

I apologized for being weak and creating a scene, but then Kandi of NDSS, also a mom to a little boy with DS, held my back and said “This is all for Zack.”

But this is for all of them. The 400,000 people living with DS in America today. The moms and dads who have been through it all and the new parents of the 1 in 691 births with a DS diagnosis every year. This is for my new friends who have college degrees and who dance or sing or act. It is for their past accomplishments and their future successes. They are all rockstars. They are all role models for us all.

 

 

Several families have sent me/us thank-you messages. I am appreciative and yet I shake my head and whisper, “No, thank YOU.”

You who rearranged doctor appointments and missed school and work. You who traveled five hours in the morning for one hour in our little makeshift studios just to turn around and drive five hours back home — because you told us you ‘just had to do this.’ You who trusted a stranger with a camera. You at the NDSS who travel multiple times a month, endure difficult phone calls and long Senate meetings and House bill lingo. You who march and fundraise and do not sit quietly with the status quo.

 

(Images below are of some of the models I worked most closely with, emulating the following rockstars: Usher / Pink / Elvis Costello / Billy Joel / Elvis / Michael Jackson / Lenny Kravitz / Lady Gaga / Gwen Stefani / Janis Joplin / Pat Benatar.)

 

Images from this photo session will be used in promotion for and on display at the NDSS 30th Annual Gala and Auction. This year’s honorees include ABC and actor and advocate Chris Burke. Final posters of our rockstars will be available for purchase. All proceeds from this event will go toward the NDSS.