If you’ve been following me for a while, this young man will look familiar. I first photographed Ari and his family for a session through Inspiration through Art, an organization that helps provide and capture memories for families who are dealing with hectic schedules due to having a child who is suffering from a serious illness or life altering disability. Here’s what Leah said about Ari two years ago:
“Ari has a rare chromosome disorder called Trisomy 9 Mosaic. What makes it so rare is the mosaic part because every child that has mosaic has the extra number 9 chromosome in different parts of their body. Ari was given a very grim prognosis. We were told he would never learn to eat- suck and swallow- but with plenty of feeding therapy and amazing therapists he worked hard and avoided the threat of a feeding tube more then once. The doctors said he would never walk- but after a surgery on his spine for a tethered cord and tons of physical therapy, Ari was walking by the age of 3 without the use of a walker. They said he would never communicate- but today, with bi-lateral hearing aides, and a 500 vocabulary of signing –he communicates nice and loud! He is the most amazing little boy who has such courage and determination – he is a people person and loves to be loved and he loves to love. We have has several close calls where we almost lost him – but with faith , hope and a lot of prayers from friends and family, Ari today is strong and thriving- he is our SUPERMAN.”
Since my first session with the Cohen’s, my relationship with the family has grown. Ari has an older sister Rosie, whom I’ve grown to love as an adopted little sister of sorts, and I consider Leah, his mother, a part of my family as well. Ari has an amazing (yet at times, challenging) life of living out daydreams as he dressed up like superman, visits with local police, and is even an honorary member of the Lynn University baseball team. Last Friday, Ari joined the Boca Raton Ocean Rescue team, and I was invited to
hang out with all the lifeguards photograph his day as a lifeguard.
We met at the Ocean Rescue headquarters for a quick pre-shift meeting and Ari was given his lifeguard trunks, a signed shirt, and a whistle.
They let him play with the radio and sit in the driver’s seat of the captain’s truck while the sirens wailed. Ari made sure his seat belt was on and even yelled “MOVE” on the speaker.
Backboard, surfboard, same difference, right?
After playing with some of the equipment in the garage, we headed through the tunnel to the beach where Ari would play out an ocean rescue on the boat. I was secretly hoping for some slow-mo baywatch action…
I was going to join them on the boat, until I saw the size of it. Not to mention the waters were a little choppy… You go ahead guys, I’ll shoot from the beach. I can only imagine the PURE JOY on Ari’s face as they let him steer the boat (not to mention how stoked Rosie was to share the experience with her BFF and a way-cute lifeguard)
As soon as his feet touched the sand, Ari signed “more! more!”, which was no surprise to Leah. She had already mentioned how that would be the first thing he said when he got back to dry land.
The guys posed for a few group shots on the board and taught Ari how to surf. Ari was more interested in taking his shirt off and joining them in the water.
Before splashing around, Ari looked back for his big sister and HUGGED HER. A moment that Leah would later tell me hasn’t been documented since the last time I photographed her family over two years ago.
“I’m not surprised because you have done it before but this time, this time I have no words. You captured a dream – his and ours. You captured in one picture like the only picture ever of Ari hugging Rosie since the last time you took pictures. It was a moment that you don’t see so often – Ari has had a crazy year medically but Rosie has had a crazy year emotionally so it was so amazing to see and now have captured!!!”
HUMONGOUS thanks to the Cohen family for inviting me along, and to the Boca Raton Ocean Rescue team. It wasn’t just a day fulfilling a boy’s dream, but a day that made me fall in love with photography even more.