January 2009, Wink webzine
Shutter to Think
Beautiful Cole.
Photography serves countless worthy purposes. It is media, delivering news around the world; sometimes, words alone do not do an event justice.
Photography documents history, grand and small, for generations to come, whether it is the history of our world or of one's own family. For me, photography is an art without limits: It can be abstract or literal; a portrait that divulges character; a candid that shows movement and the beauty of the human contour . . . But, on one September afternoon, I experienced photography like I never had before. On this afternoon, photography captured, as softly as a gentle butterfly net, a tiny miracle. Or, if you don't believe in miracles, it captured, at the very least, hope.
Four years ago, my friend, Kim, wanted a family portrait to hang above her mantle; but she was concerned about one problem. Her son, Cole -- then seven years old - suffers from Focal Segmental Glomerulosclerosis (FSGS). This disease, which is still without a cure, attacks the kidneys, causing kidney failure, high blood pressure, and significant edema -- or swelling -- in the facial area. To Kim, Cole is Cole, with swelling or without. He is her tiny warrior, her beautiful boy with curly, flaxen locks and a passion for hockey. But, she wanted a family portrait without a reminder of the pain he had endured at such a young age. So we waited. We waited for the swelling in Cole's face to lessen.
"He looks great," Kim eventually said to me on the telephone with excitement in her voice. "The swelling is down." She called on a Tuesday, and we scheduled the family portrait for the following Sunday. I went to Maine with a friend on Friday for relaxation, with plans to return on Sunday morning. As I mentioned earlier, it was late summer. On Saturday, there was a brisk, reckless wind on the shores of Maine. My friend and I, determined to relax on the beach regardless, dressed ourselves in hooded sweatshirts, swaddled ourselves with beach towels, and took our places in our beach chairs. Occasionally, the wind settled, letting the sun break the chill. We were happy . . . until my cell phone rang.
Cole's face had swelled again. Typically, when Cole's face swelled, it swelled for an indefinite period of time. Obviously, Kim was disappointed. Knowing that Kim is a prayerful person, I told her to say a prayer and that I would, too. I asked her not to lose hope yet. Regardless, I told my friend there was no longer a rush to return home from Maine the next day. We needed a miracle.
Rescheduling portraits had never been difficult before, but the portrait of Kim and her family was different. No one could predict when Cole would be well enough to sit at the other end of my camera lens. And, during this time, a family portrait represented so much more to Kim than documentation or artwork. She wanted a picture of her family healthy to remind her of the days before Cole's illness, and to give her hope for the future. I, of course, wanted to give it to her.
To our surprise - our tremendous surprise - the swelling in Cole's face diminished on Sunday morning. My friend and I rushed home from Maine, and I met Kim and her family where I have taken a myriad of portraits: Peggotty Beach in Scituate.
It was finally time to take a picture of Kim with her husband, Bob, and her two children the way she envisions them. Cole and his older sister, Hannah, looked carefree, like children most often do. They skipped and hopped at the water's edge, dodging waves as they tumbled onto the sand. They skipped stones while I assembled my photography equipment, and just as the sun began to melt into the pink and blue sky typical of late summer dusk, Kim, Bob, Hannah and Cole came together and sat on the sand. They came together naturally with smiles on their faces and affection. I pressed my shutter button.
When Cole returned home, his face began to swell again. Could it be that we did experience a tiny miracle? Could it be that something greater than us all intervened that day?
We will never know. But, each time I see the portrait, which still hangs on Kim's living room wall, I wonder.
Cole Pasqualucci is now 11 years old and is still, with his family, advocating for a cure for FSGS, from which he still suffers. He has had one kidney transplant with transient success and now thrives on Dialysis during the night. He is a warrior, so often with a smile on his face as he attempts to go to school every day.