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(Photos by David Sandberg)
Ben Perez always understood the importance of heart. Well beyond his 12 years of age, he seemed to know instinctively that the simplest acts often have the most profound impact on the lives of those around us. His mother could see it in the homemade cards he lovingly created, and his family and friends could taste it in the dinners he helped prepare.
“He had the biggest smile, beautiful blue eyes, perfect white teeth and spiked hair,” says his mother, Amanda Perez, Monterey, California. “He was very lovable and caring. Never a day would pass without a kiss and an ‘I love you.’ He was also very smart—he could build LEGOs without any directions, loved to cook and enjoyed arts and crafts.”
To those who knew him, it was only natural that Ben so acutely understood the significance of heart. Just seven days after his birth, doctors conducted Ben’s first open-heart surgery, an unsuccessful attempt to repair a congenital heart defect. A succession of surgeries followed—one at 6 months, another at 7 years—as well as countless tests and procedures.
Last September Ben developed more serious complications that confined him to the University of California, San Francisco (UCSF) Children’s Hospital for three months. As was his nature, Ben used the time as an opportunity to connect.
“He was always full of life, we called him an old soul. He made quick friends with everyone there,” Amanda says. At UCSF, Ben organized a staff poker night, during which he passed out bubble gum cigars, as well as often cooked his favorite turkey soup, which was made from scratch.
And when he wasn’t keeping the doctors, nurses and staff entertained, he was photographing them, building a scrapbook to record his numerous medical procedures.
“Ben was taking pictures with his instant camera and arranging them on construction paper. A friend of mine bought him some scrapbook materials and his scrapbooking just took off from there. His photo album was a way for Ben to record and share what his body was going through and explain it to his friends,” Amanda says.
scrapbooking as therapy
As scrappers, most of us understand the emotional impact a photograph conveys; how it stops time and allows us a moment to reflect. Therapeutic scrapbooking began with just such a premise: photographs as a means to heal, or at least address and cope.
Stephanie Matthias, who works at UCSF with children facing life-threatening diseases, says therapeutic scrapbooking uses the art of displaying photographs, journaling and other memorabilia as a therapeutic approach to dealing with grief, loss and recovery.
Stephanie, now 25, successfully battled lymphoma at age 13 and understands firsthand the positive power of scrapbooking. “The idea is to provide an opportunity for families, caregivers and patients to work together on a project inspired by memories, allowing them to engage in the healing process,” she says. Amanda says the process of scrapbooking encouraged both verbal and non-verbal forms of communication that allowed Ben to express, understand and validate his emotions.
when memorabilia becomes memorial
After three months in the hospital, UCSF doctors decided that Ben’s only option was a heart transplant. “We knew when Ben went in that it was 50/50,” Amanda recalls. Surgeons couldn’t control Ben’s bleeding and he died during the procedure on December 24, 2005.
“I think that we were all in shock for several days,” Amanda says. But it wasn’t long until family, friends and UCSF staff turned to his scrapbook for solace. Though he was unaware at the time, Ben left behind an endearing legacy that those close to him will cherish for generations.
True to his spirit, Ben’s mother Amanda, sisters Emily, 20, and Demelza, 8, and friend Kristen Farnum, recently created Ben Perez’s Scrapbooking Club, a program at UCSF that provides each sick child with an embroidered bag filled with scrapbooking tools, an album, paper, stickers and pens. The club also supplied UCSF with two digital cameras and a printing dock. “It’s been a huge success. We’ve already run out of albums so I’m currently looking for donations,” Amanda says.
The power of Ben’s scrapbook, just like the loving boy who created it, continues to be a positive influence in the Perez family. The moments of his life—the grief, the love and the poignant occurrences that might have otherwise gone unnoticed—are all recorded forever. “I look at his book often, which is hard, but it also gives me a little happiness that I have something he worked on before he passed away. Emily, Demelza and I talk about Ben all the time.”
If you want to contribute to the organization inspired by Ben, please contact the following:
Stephanie.Matthias@ucsfmedctr.org
phone: 415-353-1203
or by mail:
505 Parnassus Avenue, L171, Box 0210
San Francisco, CA 94143
