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The Honolulu Advertiser
Posted on: Sunday, April 27, 2008

Grieving mothers create living tributes to their children

 •  Moms turn grief into action

By Hillary Rhodes
Associated Press

Hawaii news photo - The Honolulu Advertiser

Ryan and Kelly Borich hold their dying 3-week-old baby Gracie Maeas she is photographed at Children's Hospital in Minneapolis by Jessica Person, a photographer with Now I Lay Me Down to Sleep. The foundation provides keepsake photographs for families whose children have died or are dying. Person, who lost her own son soon after his birth, says she offers her photography skills because it has helped her cope and helps other grieving parents cope as well. Gracie Mae suffered a cardiac arrest during delivery and was living on life support.. After several weeks of testing for brain function, her family decided to remove her feeding tube and take her home.

DAWN VILLELLA | Associated Press

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Please join our discussion: How have you coped with loss?

The first Mother's Day after a drunk driver killed Debra Bonde's 19-year-old daughter was particularly difficult, for obvious reasons. Worse, the holiday fell that year on Anna Bonde's birthday — the first one she didn't get to celebrate.

Since then, Bonde has found solace — and distraction — in the work she does running a nonprofit organization helping other children.

For women who have had to endure the death of a child, channeling grief into good works, community service or acts of charity, particularly for children, can help manage the agony of mourning.

One mother uses her son's memory to fuel a foundation that raises funds for research on the rare form of cancer that killed her 4-year-old son. Another mother uses her photography skills to capture first images of babies that will not live, a service she began providing after she realized how important "loss photography" was to her own healing process after her own baby died 30 minutes after he was born.

Bonde, from Livonia, Mich., pours her energy into Seedlings Braille Books for Children. She was transcribing children's books into Braille even before Anna was born, but after her oldest daughter was killed she started the "Anna's Book Angel Project," which distributes about 1,200 free Braille books to children every year, each one including an inscription that says the book was made in loving memory of Anna Kristina Bonde.

She receives requests from all over the world because Braille books can be expensive and hard to find. Bonde has met sight-impared children who have only owned one or two books, a striking contrast to her own children who grew up surrounded by reading material.

"It really does help to know that Anna is still bringing joy and touching people's lives, because she obviously really did when she was alive," Bonde says. "People still know her name and think of her."

FOUNDATION IS 'BITTERSWEET' WORK

Ann Fahey-Widman's 3-year-old son Jake complained of a stomachache one afternoon, but it went away just in time for ice cream, as children's ailments so often do, Fahey-Widman says.

However, Jake wasn't imagining it. The discomfort came back the next day and a trip to the doctor's office resulted in a CAT scan that revealed such rampant cancer that even the emergency room doctor broke down while showing the images to Jake's parents.

A mass the size of an eggplant hid the entire right side of Jake's vital organs, says Fahey-Widman, who lives in the Chicago suburb of Gurnee. He had an extremely aggressive form of childhood cancer called neuroblastoma.

In 2004, his family spent more than 200 days and nights in the hospital with him. He went through at least 12 rounds of chemotherapy, three surgeries, three stem-cell transplants and was in isolation for more than a month.

And then, miraculously, he was declared to have no evidence of disease. Filled with a new sense of hope, Fahey-Widman started The Super Jake Foundation for her son the superhero fan, to raise awareness and research funding for the disease that her son appeared to have beaten.

But right around the time of the foundation's first fundraiser, Jake relapsed. He had a new tumor in his head. He went blind in his right eye. More radiation and chemotherapy couldn't save him. He died at age 4, in May 2005.

"Pretty much all holidays suck. There's no nice way to say that," says Fahey-Widman. "Mother's Day is particularly challenging. One, it takes place in the spring. People look forward to spring because of life and growth and rebirth and renewal, but that's not us."

Last Mother's Day Fahey-Widman got together with other moms and dads in her local area who have lost young children, and they visited the various cemetery plots where their children are buried. This year they plan to make scrapbooks.

Although it's difficult at times, Fahey-Widman also pours her grief into the foundation in the hopes that one day the medical community will find a cure for the cancer that killed her son.

"It's very bittersweet for me because I can't save my own child," she says. "But having said that, my son died, and I want to do everything I can do to stop other kids from dying like he did. I feel like it's my final gift to him."

'LOSS PHOTOGRAPHY' HELPS GRIEVING PARENTS COPE

Mother of three and Minneapolis-based photographer Jessica Person directs her gift-giving to other mothers (and fathers) who are going through what she experienced: the death of a newborn.

Part of a national nonprofit organization based in Littleton, Colo., called Now I Lay Me Down to Sleep, she offers free photography services to any mothers or families in the Minneapolis area whose babies died in utero or will not live long after they are born.

She lost her own baby, Eli, 30 minutes after he was born with a chromosomal disorder called trisomy 18. He died of a heart defect related to that condition.

Person's husband, also a photographer, captured images of Eli that helped his parents cope with their grief over his death. Person's favorite picture was one of him completely naked on a scale.

"I really want to see who he was," she says. "He had a big abdominal wall defect. That's part of who he was. He had a giant cleft lip. Yep, that's part of who he was."

Person has taken photographs of about 60 babies since she began doing loss photography four years ago. Some of the babies she photographs have already died. Some die while she's photographing them. Some have been gasping for air and nobody does anything about it, "because they're not supposed to."

But Person goes through it because she knows how important the images of her own baby have been to her.

Person gives parents "showable" images — pictures they can show people that don't emphasize their baby's flaws. Often those are hands and feet pictures. She also asks parents if they want images that capture what was abnormal about their baby.

"If they see a baby who's too perfect, they're going to wonder why it's gone, and that's hard for grief," Person says. "The heart of me as a mom says these moms need this."

HELPING OTHERS, HELPING THEMSELVES

Helping others can be an effective way for grieving mothers to cope with their pain, says clinical psychologist and grief expert Therese Rando, based in Warwick, R.I.

"It's a human reaction that if we can help others when we've been through adversity, that tends to help us," says Rando, author of "Grieving: How to Go on Living when Someone You Love Dies."

Turning around and helping the community can give meaning to a terrible event, memorialize the person who died and offer relief from the powerlessness parents might have felt to prevent the death of their child, Rando says.

"It allows them to move from a position of being a victim of this terrible loss to being empowered to do something for someone else," she says.

Anna Bonde was an actress, a dancer, a poet and an A-student. She and four college friends were hit by a drunk driver going the wrong way on the Interstate near Springfield, Ill., in the wee hours of St. Patrick's Day 2001. They were on their way to New Orleans for spring break, switching drivers every two hours, drinking only coffee and soda and wearing their seatbelts.

Three of the five were killed, and the drunk driver is serving a 10-year sentence.

Mother's Day, birthdays and other holidays are "tinged with sadness," says Bonde, who recalls the wrenching moment when a policeman came to her door and said that Anna had "expired."

"It's always there," Bonde says. "It's always there under the surface. But you learn to manage it better as the years go by. ... If I can just get busy helping other kids, then pretty soon, I'm OK."