Saying Goodbye Forever

updated 02/14/2005 AT 01:00 AM EST

originally published 02/14/2005 AT 01:00 AM EST

A few days after his birth on Jan. 10, 2004, Josiah Bennett Adams is swaddled in a blanket at a Seattle hospital. As his mother, Alice, hovers close by, photographer Lynette Johnson snaps his portrait. "To get the best picture," Johnson gently tells his mother, "I'll need you to hold him." "I can't," Alice Adams answers. The child was born with health problems so severe, she explains, that to even jostle him could be fatal. "He might die," she says, and both women burst into tears.

Within a week Josiah—born with severe brain damage from oxygen deprivation during birth—left the world for-ever. But for his parents, whom Johnson coaxed into holding Josiah's tiny, pink body in their arms for a series of black-and-white photos, his life will be more than a memory. A photographer who supports herself by documenting festive family occasions—including the wedding of Microsoft chairman Bill Gates and his wife, Melinda—Johnson also makes intimate portraits of terminally ill newborns and their parents at Seattle's Children's Hospital and Regional Medical Center. "I photograph parents with their hands on the baby, with their wedding rings showing—the things you'd do with anybody," says Johnson of the pictures she has taken of more than a dozen families. But hospital grief counselors say Johnson's portraits are anything but ordinary: "Lynette helps people heal," says Michelle Frost, nurse manager of Seattle Children's Pediatric Palliative Care Service.

Johnson's awareness of the pain felt by such families began in 1984, when the infant son of a close friend, Joan Reijnen, died at 3 months, after being born severely premature. Urged by friends to move on, Reijnen instead shared pictures she had taken of her baby during his last weeks of life. "In our society we don't allow that kind of opening up," says Johnson, the mother of two grown daughters. "We just don't experience death in a healthy way." Years later Johnson was asked by her sister-in-law, who had delivered a stillborn daughter, if she would be willing to photograph the child. "Taking those pictures was one of the hardest things I've done," says Johnson. "But I knew if I could do it for my niece, I could do it for anybody." She then approached the staff of Children's Hospital with an unusual offer: "If any of your parents want photos of their baby," she told them, "I'll do it as a gift to them."

For parents who request Johnson's services, her work is indeed that. "She was able to capture what we could not," says Carin Brimley of Johnson's pictures of her son Adam, who died at 16 weeks last August, after being born with spina bifida and heart defects. "His content face, and how he just could not be comfortable in his body, and his little crying face without a cry." Alice and Dave Adams, now pregnant again, have asked Johnson to photograph the arrival of their new baby in March. But Josiah will always be a part of their lives. "I love showing him off," says Alice of the portraits she has scattered around her Seattle home. "This is sort of what we have instead of him—it's Lynette's pictures we cherish."

Fred Moody in Seattle

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