Celebrating Life With Children Struggling With Illness

Behold
The Photo Blog
May 15 2013 11:00 AM

Celebrating Life With Children Struggling With Illness

Soulumination
Georgia was born to Alison and Brian on Nov. 19, 2009. She suffers from a rare form of cancer known as Juvenile Myelomonocytic Leukemia (JMML), with an AML mass tumor. “She is as sweet as she is sassy,” her mother says.

Courtesy of Soulumination

Lynette Johnson had taken many photographs of children during her photography career when she received a call from her sister-in-law in 1996 asking if she would photograph her baby who was stillborn.

“The first child I photographed (who had passed away) was my niece,” Johnson said. “The idea popped into my head that if I could do it for my niece, I could do it for anyone.”

Johnson put that idea into motion after meeting a woman who worked in palliative care at Seattle’s Children’s Hospital and Regional Medical Center. Inspired by the palliative care work, Johnson told the woman she would be open to providing photography services for the patients and that she would do it free of charge.

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After nearly a decade photographing children and their families in the Seattle area, Johnson formed Soulumination in 2005. The foundation provides photographs to families who have children ages 18 and under facing life-threatening conditions. They also provide images for children 18 and under who have parents who are terminally ill and nearing the end of their lives.

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Austen, with her mother June, battled Non-Hodgkin’s Lymphoma. She passed away on Aug. 14, 2012.

Courtesy of Soulumination

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Jada was born March 21, 2010, and died March 25, 2010. She had Vacteral Syndrome. Her parents, Marla and Mark, said what they loved most about her personality was her sweetness and strength.

Courtesy of Soulumination

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Kate was diagnosed at age 12 in late 2011 with osteosarcoma in her left femur. She is with her mother Gail here and older sister Paige (l). Corine is the mother of 10-year-old Elton Jr. "Marrying my husband and giving birth to my son are the two great memories of my life," Corine said.

Courtesy of Soulumination

Soulumination began as a small project for Johnson that spread mostly through word of mouth but quickly grew after People magazine published a story about Johnson in 2005.

People magazine, no one reads that,” Johnson recalled with a laugh about the story that would help launch Soulumination. “I had no idea! I’m not really a pop culture person. Years later someone came with their sick daughter and had a copy of the issue with her and told me she had read about me before she had a sick child and asked me to sign the copy.”

Johnson teared up a couple of times while speaking about Soulumination, clearly still moved by the philosophy of the foundation.

“For a while I think people would worry about [portrait sessions] because a lot of local media would paint what we did a little more toward death than what it needs to be. We promote it as celebrating life. We promote ourselves as loving and accepting of the kids.”

“People, when they hear about what I do, no one says anymore ‘I don’t know how you do what you do—I couldn’t do it.’ It’s way more accepted because we have presented ourselves in a positive way in the community. … It’s the most amazing and rewarding thing, and it helps more when there is a community around and everyone understands and accepts; things are starting to change about death and dying (in Seattle).”

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Barry was born on March 30, 1994, in Walnut Creek, Calif. He suffered from a rare genetic disease called Fanconi anemia, which leads to bone marrow failure. Barry passed away on Sept. 29, 2007. He was the son of Cindy and Richard and the younger brother of Brittany and Jamie. Barry had an amazing attitude, said his mother. “I don’t know how I would have coped if Barry weren’t so positive,” she said.

Courtesy of Soulumination

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Blake was born on May 31, 2001, and passed away on October 12, 2006. He was the son of Greg and Denise, and the brother of Daniel, Drew, and Brielle. Blake suffered from Vein of Galen Malformation, Epilepsy, and Hydrocephalus. Denise wants everyone to know that “Blake always had a very warm and gentle spirit. He loved to be held and sighed when he was happy. We all loved to snuggle him. He was a constant reminder of what is important in life. He touched the hearts of all who have met him.”

Courtesy of Soulumination

That isn’t to say things have always been easy, especially when Johnson first started taking pictures.

“I did it all the first couple of years. We had 24 kids the first year, then 74 kids, and you just can’t take on endless grief,” Johnson said.

Johnson also stressed that their services aren’t always a final portrait. “Quite a few of the children we photograph end up surviving. Not a large number, but for sure a significant number; some miracles in life and others had a better prognosis from the start.” The captions featured here were provided by Soulumination with the most up-to-date information they have.

As demand grew, Johnson started working with other photographers in order to help more families. Today, she and a team of approximately 40 volunteer photographers do portraits for about 200 families a year. The families not only receive images on a disc but also prints, an album with 12 images, copies for relatives, and a bracelet with the child’s picture in it.

Johnson said that while she is sensitive to every family’s unique situation, she approaches the shoots straightforwardly.

“I always try to do [the shoot] exactly like a healthy kid shoot. I would do the same things I would do for a parent with any child; I try to make the shoots feel as if it was just really normal for the family. You try to overlook whatever affliction it is, get them in great positions and shoot.”

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Charlotte—or Cha-Cha as her parents call her—was born on Feb. 15, 2002, and passed away Sept. 14, 2010. She suffered from an undiagnosed condition called Progressive Neural-Muscular Disease, that resembles Tay-Sachs disease. “She was so soft and sweet,” said her mother Angelica. "She takes your breath away. You could kiss her 3,000 times an hour and she’d not get tired of it. You connect with her almost in a spiritual place, because she’s not verbal. What’s happened through Charlotte’s life, to me, is I’m amazed at the goodness of people. I expect good now instead of bad.”

Courtesy of Soulumination

Soulumination
Evan was with us in this world for only 17 days, from April 1, 2012, until April 18. He had a 6-year-old sister named Olivia. Evan succumbed to necrotizing entercolitis and sepsis.

Courtesy of Soulumination

That isn’t to say it’s always easy, especially for end-of-life shoots. “You can also do your work quietly, and amazingly enough I bond with them [clients]. I’ve had good mentoring from the palliative care unit. They explained to me that it’s OK if tears go down your face, but don’t ever go in that room owning that grief: It’s not your child; it’s not your loss.”

Part of that quiet is making sure not to add anything to the shoot, so Johnson and her team rarely use any styling (unless someone wants to wear makeup) or bring in big studio lights.

“We pride ourselves on being good at capturing the beauty in people exactly as they are,” said Johnson.

Although Johnson began the foundation in response to the need from a family member, her services have provided a welcome possession for many families.

“I haven’t heard of any family wishing they hadn’t done it,” Johnson explained. “Mostly they write in later saying that even if they had to put them away for a while because they were hard to look at, the pictures are now special possessions.”

“I consider my clients to be my friends, and I’m starting to realize that feeling is mutual; in life you can’t always assume that.”

To connect with Soulumination, visit their Facebook page.

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