Program aims at giving kids OK to express grief

Makenna Barnes,7, shows vacation photos on an iPhone to grief therapists Diane Castro and Jennifer Lang with Wings on Wheels expressive grief therapy program during a visit on Tuesday, July 16, 2013, at their home in St. Peters, Mo.

Makenna Barnes,7, shows vacation photos on an iPhone to grief therapists Diane Castro and Jennifer Lang with Wings on Wheels expressive grief therapy program during a visit on Tuesday, July 16, 2013, at their home in St. Peters, Mo. Photo by The Associated Press.

ST. LOUIS (AP) — A 6-year-old girl in a church youth group raises her hand to offer her definition of cancer.

"What I've heard is that nobody can make you well again, so you're sick forever," says Nora Branch, who pauses before adding, "I've never had cancer."

Jennifer Lang, an expressive grief therapist, gives Nora a warm smile and explains to her that sometimes cancer patients don't survive, but sometimes they get better.

The youth group at West County Assembly of God in Chesterfield is coping with the absence of their friend, Hannah Smith, 10, who has been in the hospital for the better part of the past two years, first with osteosarcoma, a bone cancer, followed by leukemia. Lang helped the class stay connected to its absent friend.

She has been an expressive therapist since 2012 with the BJC service called Wings, a nonprofit organization helping patients 21 and younger with serious illness with their clinical, emotional and social care, regardless of ability to pay. Expressive therapists use activities to help people process their emotions.

This March, BJC launched a new program called Wings on Wheels, free to the public. Lang drives a brightly decorated green van to schools, churches, homes and social organizations in the area to provide expressive therapy for children and young adults experiencing the loss or absence of a friend, teacher or loved one.

Lang will have a class or group work on an art project she can take to the ill student or the family of a child who died. For an ill child, the artwork can help ease feelings of isolation from friends. If the child died, it provides a sort of memorial service for the class.

"We think about adults having a community, but we don't think about kids and their community," Lang said, explaining the children's need to stay connected.

The service also helps parents and other adults who may have hard time approaching children about death or severe illness. Lang gives adults tips for carrying on the conversation after she leaves.

"The natural inclination is to protect our child from it, but that's not helpful to children," Lang said. "They need more age-appropriate direct information. Otherwise, they're going to come up with their own conclusion about it."

Lang began her session with the youth group July 17 by explaining that cancer is not contagious. She used the book, "When Someone You Love has Cancer," to tell the children that they may hear scary-sounding words about Hannah's sickness, but some of them aren't scary at all. Chemotherapy, for example, is the medicine, and remission means the person is better.

Lang told the children that it is acceptable to feel a range of emotions about a friend's sickness. She said it is OK to cry, to be afraid, angry, sad and even happy. Most importantly, she encouraged the children to ask questions about what they did not understand.

Hannah's younger sister, Annaiah Smith, 9, said she was confused when her older sister lost her hair because she didn't know how chemotherapy works, but Hannah explained it to her.

"I kept staring at her, and she just said, That's it. I'm gonna tell her,'" Annaiah said.

Hanna Hasty, 9, said it must be tough for a child to deal with cancer.

"I'm sad Hannah has to go through everything because she's my age," she said.

Yet she said her friend's courage has inspired her to be strong.

Hannah's favorite movie is "Finding Nemo," so Lang brought a fishbowl with the quote "Just keep swimming" painted on the outside and character statues on the inside.

Students picked out rocks, and Lang talked about rock tumblers, which are machines that knock rocks together to smooth them out.

"Hannah's been going through a lot," she said. "When friends go through it together they help smooth it out."

Each group member, including the teachers, painted a rock for Hannah. Some of them included messages, some just designs of her favorite colors. When finished, Lang put all the rocks in the bowl to be delivered to Hannah.

At home July 22, Hannah welcomed Lang for a visit.

She had undergone a bone marrow transplant June 26 and was released July 18. Her hair was just beginning to grow back and she had a prosthetic leg. Hannah said she doesn't think she's the same person she was before her diagnosis.

"Everything changed me, my perspective of life. I haven't figured it out, but I feel it in my gut," she said.

When Lang gave her the fish bowl, Hannah said she would look at the rocks later in private. It made her sad to know she can't be with her friends, but she said she knows she's loved.

She also said she loves the quote "Just keep swimming" because it reminds her to stay strong.

Lang asked Hannah if she ever had days that she just wanted to quit swimming, and Hannah immediately said yes. There were times when she listened to another patient scream, and a friend she made in the hospital died shortly after a heart and lung transplant.

"It's been hard," Hannah said.

But Lang's visits have raised Hannah's spirits, according to her dad, Wayne Smith, 38, of Imperial.

Any time Hannah hears the news that Lang will be visiting, she jumps up and down and smiles, he said.

He was touched that Lang visited Hannah's church, too, to keep her connected with friends.

"No child asks for this, but they have to go through it. They have no choice," Smith said. "For Jennifer (Lang) to be in their lives is amazing."

Other parents have been impressed with the expressive therapy services, too.

Andrew Barnes, 38, and Jamie Barnes, 36, of St. Peters, have relied on Wings to help their three children, Adrien, Peyton and Makenna, all 7, deal with the loss of their quadruplet sibling Hayden.

When Hayden was six months old, it became obvious he wasn't developing like his siblings. Doctors discovered his brain was shrinking but couldn't figure out why. He remained at a cognitive level of 6 to 8 weeks, and died at age 6.

Wings provided pediatric hospice and an expressive therapist, Diane Castro, for the siblings. Lang was brought in shortly after Hayden's death to prepare Adrien, Peyton and Makenna for the school memorial service.

Lang and Castro visited the family's home on July 16, the six-month anniversary of Hayden's death.

The children talked about the vacation they had just taken and what Lang and Castro called spaghetti feelings, or mixed emotions, about enjoying a trip without their brother.

Jamie Barnes said the Wings visits have helped the children express themselves.

Peyton deals through talking and Adrien writes stories about his brother. On this day, Makenna went to her room for some alone time and came back with a drawing for Hayden.

"Progress is kind of a weird word in this work," Lang said. "Progress might be they expressed themselves in tears today."

Lang brought a shadowbox project for the family's vacation souvenirs. She also had the quadruplets write down memories from their trip that Hayden would have loved and put them in the box, too.

Lang's presence provides a sort of therapy for parents and other adults, too.

Andrew and Jamie Barnes expressed guilt for having a vacation that went so smoothly without Hayden.

"I felt like we abandoned him," Andrew Barnes said.

Hannah's dad said he benefited, and talking to Lang gave him a positive attitude.

"She doesn't just keep it at Hannah's level," he said. "She talked to all our kids and brought joy to them."

Joan Thompson, president of the Wings on Wheels board, said requests for community visits are on the rise.

The important part of the service, Lang said, is to normalize it for children so they don't believe they are alone in their thoughts.

"We're speaking in kid language," she said. "We're using play and art and music ... You're adding something pleasurable to help deal with something very painful."

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