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Wednesday, March 16, 2005 - Page updated at 12:00 AM

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Images become treasures to grieving parents

Special to The Seattle Times

Little Adam Brimley, son of Scott and Carin Brimley, was connected to an array of tubes and wires when photographer Lynette Johnson arrived for his portrait session.

Johnson had been summoned to Children's Hospital & Regional Medical Center by its palliative-care team to take portraits of the baby and his family while there was still time. Born with spina bifida, heart calcification, hydrocephalus and many other related health problems, Adam was to live only 16 weeks.

"Lynette captured so many aspects of his personality," Carin Brimley said. "His content face ... and how he just could not be comfortable in his body. And his little crying face without a cry."

To Johnson, who photographs weddings (she shot Bill and Melinda Gates' wedding), bar mitzvahs, confirmations and other rites of family passage, and who has been a Children's Hospital Guild member for 20 years, the extraordinarily sorrowful photo shoot was an exercise in providing a grieving family with some ordinary trappings of joy.

"I tried to do what I always do," she said later, "all the tender things you'd want to catch for anybody."

And indeed, when the photos of Carin Brimley with Adam were printed, they had about them an air as much of celebration as of mourning.

As time went on, the portraits Johnson donated to the Brimleys were to prove immeasurably important to them. "I keep them in our kitchen, so Adam's with us every day," Carin said. "For such an earth-shattering experience, it was wonderful: God gave us something tremendously special and we were able to love him and let him go."

Other recipients of Johnson's donated services make no less moving statements. Alice and Dave Adams lost their son Josiah Bennett Adams only 15 days after he was born, his brain so damaged by oxygen deprivation that he was never able to breathe on his own. Alice Adams was to keep pictures of Josiah out at home, always visible, in the months to come.

"I love showing him off," she said six months after Josiah's death. "He's really beautiful. This is sort of what we have instead of him. It's Lynette's pictures that we cherish." So much so that when the Adamses had a second baby last March 10, Johnson was there to photograph his arrival.

And it is a measure of the power and meaning of Johnson's photographs that a magazine and TV accounts of her work earlier this year have drawn response from people all over the country, some asking her to come photograph their dying child.

Johnson's mission began 20 years ago, when she set off on an odyssey that was to furnish powerful lessons about the nature of the grief befalling a parent who loses a child, and about the astonishing resilience of the grief-stricken.

Hard lessons

In 1984, Johnson was in a Port Townsend childbirth class with her closest friend, Joan Reijnen. (Raised in Sequim, Johnson now lives on Capitol Hill.) Johnson, who had previously suffered two miscarriages and gone through a period of thinking she could never have children, would later deliver a healthy, full-term baby girl, but her friend was to deliver a boy 24 weeks prematurely. The baby, Reijnen's first, was named Janus, and spent his life in an intensive-care unit before dying at 3 months.

After Janus died, Joan Reijnen and her husband, Derek, returned home to friends incapable of understanding what they were going through. "It was almost as difficult," Joan said, "to deal with people and their reactions to us as it was to deal with Janus' death." Well-meaning friends would say, "God probably had a plan," "You can have another one," or "It was probably for the best."

The Reijnens had taken pictures throughout Janus' ordeal, and sent prints to friends and family. Not only were the pictures "validating," Joan Reijnen said, but "we thought they would want them. Instead, they thought we were losing our minds."

They were being confronted with the typical American expectation that they should "move on" quickly. "These terrible words, like 'resolution,' 'closure' ... what do they mean?" asks Dr. Ronnie Sue Stangler, a Seattle psychiatrist. "They mean nothing. Like so many things in our culture, grief is expected to be short-lived. But it's not."

Among those few who understood was Johnson. She never forgot seeing the particular kind of loneliness a grieving parent suffers.

"It occurred to me that you can learn to help people go through this in a good way. Because you know what? This is not 'for the best'! It's the absolute worst thing you can go through!"

Thirteen years later, she went through it with her sister-in-law, Sally Elliott, when Elliott discovered a week before her baby girl was to be born that she had died in utero.

Elliott was, she recalls now, "completely wigged out," and she brought Johnson to the hospital the day her delivery was to be induced. She still vividly remembers a social worker suggesting that they take pictures of the baby, Johnson running home to get a camera and baby clothes, and the two of them dressing Elliott's deceased baby after her delivery.

"Taking those pictures was one of the hardest things I've ever done in my life," Johnson says. "I knew then and there that if I could do that for my niece, I could do it for anyone."

A few years later, she met Beth McKinstry, a Children's Hospital palliative-care worker. When McKinstry told Johnson about her work, the photographer felt almost as if she were being called. "I just want to tell you," she said to McKinstry, "that if any of your parents want photos of their baby, I'll do it as a gift for them." A few months later, the first call came.

Always proud parents

In the time since, Johnson has been called once or twice each year to shoot such photos. She has always been struck by how loving, soberly joyful, and proud all of the parents have been of their babies. "The parents always see their babies as beautiful. It makes you feel privileged to be invited to witness something so marvelous. I really try to be respectful, keep my sadness to myself, stay upbeat. And as soon as I leave, the feeling just comes over me — the immensity of what they're losing."

When you talk with these mothers, and with Johnson, there is a presence of a powerful, terrible, marvelous mystery that hints at the essence of what it is to be human. Joan Reijnen, now the mother of two healthy teenagers, cried when talking about her oldest son, who died 20 years ago. "I'm sorry," she said. "It's just that that other child is always right there in your head."

Sally Elliott, also the mother of two healthy children, said she keeps the little packet of Johnson's photos atop a box containing her baby's ashes, in her family room, where she can see it every day. And Alice Adams glanced up constantly at her own pictures during a recent conversation in her home.

Another mother, Jodi Gradinger-Wes, whose third son, Joey, died from the incurable genetic Tay-Sachs disease in 1995, one month before his third birthday, says it is "profound" to have Johnson's photos.

"I never dreamed it would be a collection of the most beautiful photographs I could ever imagine having," she says.

She remembers Joey as someone who "just brought so much light to our lives. For years, I had this terrible desire to pull Joey's picture out and talk about him. I remember being consumed with the idea that he would be forgotten. But that has not been the case at all."

Johnson's photographs of Joey have been widely reproduced, sometimes in literature about Tay-Sachs, and their visibility is always comforting. One photograph "keeps showing up places. ... And here I always thought I would be left alone with my grief."

Not that the grief itself ever goes away.

According to Dr. Ronnie Sue Stangler, grief lasts. "There is considerable research now," she says, "about the 'biological theory of attachment.' Mothers keep their babies alive by attachment — literally. And nothing prepares you for that attachment to be broken."

This is not to say that grieving parents do not move on — it's just that they move on to a different life. Instead of getting over their tragedies by forgetting them, as others suggest, they recover and move on by remembering.

"Does life go on?" Stangler says. "Yes. Is it wonderful? Yes. But it's broken. And does your heart keep beating? Yes — but it's broken."

As for the power of Johnson's photographs, she adds, "In these studies, the grief response in the brain is elicited most powerfully by pictures. They clearly are very evocative. They allow you, for a moment, to feel whole and reunited."

Fred Moody is a writer based on Bainbridge Island.

Copyright © 2005 The Seattle Times Company

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