When it became clear that her four-and-a-half year battle with ovarian cancer was nearing its end, Carole Papp of Brownstown made the decision to record messages to her then 9-year-old daughter, Casey, so her only child could play back in the weeks, months and years that would follow her mother’s death.
Now, two-and-a-half years after Carole took her last breath, her daughter can still hear the sweet and familiar sound of her mother’s voice whenever she wants by playing back these recordings on her iPod.
“I have recordings of her singing Happy Birthday and simply saying good night,” says Casey, 12 at the time of the interview with Metro Parent. “She even recorded herself reading my favorite book, The Berenstein Bears Forget Their Manners. I listen to them a lot.”
It’s rituals like this one that have helped Casey on her journey of grief following the death of her No. 1 fan.
According to the U.S. Census Bureau, Casey is among the one in 20 children under the age of 18 who will experience the death of a parent. In Michigan circa 2012, that represents more than 117,000 grieving children.
While the grief experience for anyone of any age can seem insurmountable, it can be even more challenging for very young children who do not fully grasp the concept of death and for older children who may feel they now need to protect their surviving parent or guardian.
A place where they ‘get it’
Helping children of any age journey through grief following the loss of a parent is the mission of SandCastles, a division of Henry Ford Hospice and an organization committed to free year-round family group support for children and their parent or guardian experiencing the loss of a loved one.
Grieving children and their parent or guardian are invited to meet at one of SandCastles’ eight metro Detroit program sites for peer support among those who truly get it.
“We break up into individual groups based on age,” explains Peggy Nielsen, program manger of SandCastles. “Sitting in a group of other kids experiencing a similar loss normalizes what these kids are feeling. They realize they’re not the only kid in the world grieving.”
This realization presented an “aha moment” for Tamia Culberson of Southfield whose mom, LaChandra, died suddenly in December 2006 from a previously undetected arteriovenous malformation in her brain – when Tamia was only 4 years old. Tamia’s grandmother and guardian, Terri Culberson, vividly remembers a breakthrough moment following Tamia’s attendance at one of her first SandCastles sessions.
“In the car afterward, Tamia shared how excited she was to have found kids who had experienced a loss like she had,” Culberson recalls. “Prior to that, she thought it had only happened to her. She was finally able to talk about her feelings.”
With locations in Ann Arbor, Flint, Grand Rapids and Lansing, Ele’s Place, like SandCastles, is a free grief support service for children and their parent or guardian. Surveys conducted by Ele’s Place indicate that grieving children need support systems that can help them cope, begin to heal and prevent or stop behavioral problems.
“There is a lot of literature that grieving children are at risk for trouble in school, truancy, substance abuse, isolation and depression,” says Leela Kausch, a social worker and volunteer coordinator at Ele’s Place.
To combat this, Ele’s Place presents a place of healing for the youngest of children through those well into young adulthood with the goal of supporting these grieving kids at risk.
“Our goal is to create an environment for kids to explore, not run away from, their feelings,” Kausch explains. “Each child’s situation is unique. We respond to each child individually, meeting them where they’re at – whether the death of their parent was sudden or the result of illness or whether it was their mother, father or even both parents who passed.”
The reality of death
Erin Austin’s sons, William and Quinn (5 and 7 1/2 years old at press time), faced the reality of parental loss when their father Jeff took his life in February 2009. At such tender ages, William and Quinn struggled to grasp the finality of their father’s death and to come to terms with their feelings.
“It took William longer to process the whole thing,” recalls Erin, who lives with her boys in Milan. “He kind of understood, but he mostly cried because everyone else around him was crying. Quinn understood more and naturally was devastated.”
In their guide to childhood grief, After a Loved one Dies – How Children Grieve, David J. Schonfeld, M.D., and Marcia Quackenbush note that children must understand four basic concepts about death in order to grieve fully and to come to terms with the loss: Death is irreversible; all life functions end completely at the time of death; everything that is alive eventually dies; and there are physical reasons someone dies.
Understanding these concepts is especially important for very young children who are developmentally concrete thinkers, says Nielsen.
“When we talk with children who have lost a loved one, we explain that the person was very, very, very sick and died; very, very, very old and died; or very, very, very hurt and died,” Nielsen notes. “We use at least three verys. Otherwise, the child will get a paper cut and think he or she is going to die.”
Likewise, the well-intended words of support often expressed by those trying to comfort a grieving child can have the reverse effect for the literal thinker. Hearing that mom or dad is in heaven watching over them can be confusing to a child who is simultaneously being told they won’t be able to see each other again.
Research has shown that even infants grieve the loss of a parent and that no child is too young to be affected by the death of a loved one. And while children may grieve deeply, their outward displays of grief may come in waves. Children may feel like talking one moment and then turn to play or do schoolwork the next.
Channeling grief through play
At Ele’s Place, the staff uses activities to help the kids express and cope with their emotions. Most activities for the youngest children involve heavy use of visuals representing facial expressions.
“We have a bunch of beach balls with faces,” says Wendy Brightman, formerly managing director of Ele’s Place in Ann Arbor, of tactics used there. “We ask the children to point to the ball with the expression they are feeling that day – happy, lonely, etc.
“Young children speak about their feelings differently. For these little ones, grief is often expressed in play.”
Age-appropriate play including arts and crafts are at the center of many of Ele’s Place group activities.
For example, children in the 6- to 8-year age group make a scream box – a shoebox stuffed with a paper towel roll and filled with cotton into which they can scream as loud as they want – the sound is muffled.
“The kids love it,” Kausch notes. “Often the kids will decorate it to represent the person who died or other things they love. The box lets them scream all they want. It’s a coping tool.”
At SandCastles, children cycle through what is known as the “volcano room.” It is in this space that the kids are encouraged to release pent-up feelings by unleashing a mean uppercut on an unsuspecting punching bag or tearing through the pages of any one of the piles of phone books at the ready.
Casey Papp has made several heart-shaped memory boxes during group activities at SandCastles. Each memory box she has made contains a slit in the top.
“I put cards in there with good thoughts,” she explains. “When I am having a bad day, I pull one out and read it.”
More recently, Casey has also taken up a different craft-focused hobby as part of her grief journey, one that her mom too enjoyed: scrapbooking.
“I’m making a scrapbook of my mom,” she notes. “I went to all my aunts, uncles and friends of my mom asking for photos.”
Grieving as a teen
Among teens who have lost a parent, the challenges associated with grief are sometimes very different.
“High schoolers tend to think they have it all figured out, but their behavior often indicates otherwise,” Brightman says. “You’ll see it in their sleep patterns, truancy and slipping grades.”
At Ele’s Place, the activities for teens may take the form of crafts like collage making, but more often the teens end up in group discussion.
“Generally teens just want to talk,” Brightman says. “Sometimes their surviving parent is lost in his or her own grief and (isn’t) as in tune with the details of their teenager’s life at school or with friends. The kids help fill that void and move each other forward.”
Nielsen has worked with many teens in the 15 years since SandCastles first opened its doors. She has observed a common thread in what teens wish adults knew about their grief.
“Repeatedly I hear them say that being a grieving teen and trying to do well in school is really challenging,” she notes. “Their request is that adults just be gentler with them. They’re doing the best they can. They may not get all As, but they’re grieving.”
Likewise, teens commonly are hesitant to share their grief with the surviving parent.
“They want to protect their mom or dad who is already so sad,” Nielsen notes. “That is where another adult resource like an aunt or uncle can be really crucial. Parents should let their child know if they don’t want to come to them, that Aunt Holly or Uncle Jim is available at any time.”
Will I lose you, too?
With death now a very real part of a grieving child’s life, concern, worry and fear of losing his or her surviving parent or guardian is a common point of anxiety for the already emotionally burdened child.
More than once, Austin has had the conversation with William and Quinn about who would care for them and where they would live if something should happen to her.
“Ele’s Place counseled me to have a plan around this and to honestly talk about it with my boys,” Austin recalls. “I’ve told the boys, ‘If something happens to me, you would live here in our house with Aunt Kathy. You will always be with someone who loves you.’ I emphasize to them that I am going to take care of myself. Unlike their dad, I am not going to choose to die.”
The SandCastles philosophy of candor on this topic is similar.
“The parent or guardian of a grieving child needs to have the ‘what if?’ conversation with their child,” Nielsen advises. “This is something any parent can do, even if both mom and dad are alive. The more you can keep your child informed, the better.
“We believe in telling the truth even if circumstances are really bad, as with suicide,” she continues. “If you tell the child their mom or dad had a heart attack when they really committed suicide, when they find out the truth at a later time, they will start grieving all over again. Be honest at a developmentally appropriate level.”
Six months after Tamia Culberson’s mother died, her grandmother and guardian was diagnosed with breast cancer for the second time. Terri Culberson used the opportunity to once again convey to her granddaughter that Tamia would always be in the care of those who loved her, even if that wouldn’t be either of the two people who loved her most – mom or grandma.
“I told her that all these people in her life would be there to make sure she was safe and protected,” Culberson recalls. “Tamia knows she will always be loved and cared for.”
It takes a village
While surviving parents or guardians should play a primary role in communicating a death and its impact to their child, other family, friends and community members can and should play an integral role in helping a grieving child.
Casey Papp’s three aunts on her mom’s side and two aunts on her dad’s have been a blessing to their niece and her father.
“I call myself the girl with many mothers,” notes Casey whose aunts are a much-needed outlet for girl talk. “They help with stuff my dad can’t answer.”
Four times a year Casey’s “many mothers” take inventory of her closet noting what she needs before hitting the mall with Casey in tow.
Tamia and Terri Culberson also lean heavily on Tamia’s aunts.
“Tamia’s aunts visit four or five days out of the week and do a lot of the young stuff with her, like skating and going to the park,” Terri explains. “Tamia has lots of mother figures. But even so, no one will ever take the place of her mom.”
For Casey Papp, support comes from those outside her family as well as from those within. Her teacher at the time her mother died, Alana Vizachero, was one among many to provide extra attention and care. When the first Mother’s Day after Carole Papp died rolled around, Mrs. Vizachero asked Casey if she wanted to make the craft the other students were assembling for their mothers or would she rather sit out.
“Mrs. Vizachero was so kind,” Casey recalls. “When I told her I didn’t want to make the Mother’s Day project, she had me join her making copies and helping with other tasks while the rest of the class worked on the project with another teacher.”
It was her much-admired fourth grade teacher who also made her the teal (for ovarian cancer) bracelet with the word “Hope” inscribed on it that she cherishes to this day.
“That bracelet didn’t leave my wrist for a long time,” Casey says. “I don’t think Mrs. Vizachero realizes how much she means to me.”
The community at large plays an important role in helping a grieving child. In fact, community education and awareness is a pillar of the SandCastles mission.
“We see the grieving child once every other week,” Nielsen notes. “But he or she is seeing their teachers, friends and neighbors every day. Grief work is not in a teacher or doctor’s curriculum. Grief is everywhere, and it’s not hard to help a grieving child.”
To that end, Nielsen recommends family, friends, neighbors, teachers and school counselors listen first and foremost.
“You don’t have to have answers or a fix for the problem,” she says. “Just listen.”
In addition, Nielsen advises people to be available to grieving families at any time for anything and to be non-judgmental.
“Everyone’s experience is unique,” she notes. “If the situation gets bad, reach out for help.”
Keeping the memories alive
At significant milestones in her life, Casey will receive a letter from her mother. Before she died, Carole wrote letters for her daughter marking her entrance into middle school, her 16th birthday, her high school graduation, her wedding day and the day she welcomes a child of her own.
“I love the letters,” Casey says. “They’re helpful. They also include advice from my mom about life in general, about being nice to people.”
Each year on Carole’s birthday, Casey and her dad put flowers on Carole’s grave. And each night Casey talks to her mom.
“I believe in my mind, I can still hear her talking to me,” she says.
To ensure Tamia Culberson knows the mom she barely remembers, Terri, her two other daughters, Tamia’s grandfather and scores of extended family members make a point to regularly talk about LaChandra.
Family members tell Tamia about her mom’s love of books, a passion Tamia now has in common with her mom.
“She will know her mom,” says Terri.
At Ele’s Place, an annual balloon launch provides grieving children and their family members an opportunity to pen a message to their deceased loved one and launch it via a helium-filled balloon into the air.
In 2011, 400 kids and their parents participated in Ele’s Place’s balloon launch, an event that has come to mean so much to its participants.
“I still remember one boy in our 9- to 11-year-old age group asked me if his dad would know to turn the card tied to his balloon over, as he had written a note to him on both the front and back sides,” Brightman recalls. “Kids are so literal. You could tell this meant a lot to him.”
On the anniversary of her husband’s death, Erin Austin takes her boys out of school to lay flowers on their father’s grave.
“I make it a day of remembrance, and we honor the things that Jeff liked to do,” she notes. “The boys each pick an activity that their dad would have enjoyed.”
A common worry among grieving children is that they will forget their deceased parent. This is particularly true for children who lost their mom or dad early in childhood.
Physical mementos can play a healing and comforting role to a grieving child, whether a mother’s favorite locket, a photo of dad or a piece of clothing.
Casey Papp keeps close to her the remnants of the blue bandana her mom wore after chemo took her hair.
“By the end of her life, that bandana was almost torn apart,” Casey recalls. “She’d give it to me. I’d give it back to her. We’d go back and forth with it. She gave it to me one final time on the last day of her life. I have kept in my room ever since.”
Thanks to their faith, family support and SandCastles, Terri and Tamia Culberson have adjusted to their new normal. For Terri that means dual roles as mother and grandmother.
“God has given me a second chance to be a mother all over again,” Culberson reflects. “My daughter and I were so close. She shared her thoughts and what she wanted for Tamia. I thank God I was a good listener. I am able to incorporate what LaChandra wanted for her daughter into her life.”
While children who have lost a parent face many challenges their peers will not, they may develop extra resilience as a result. Research conducted by Comfort Zone Camp – the nation’s largest bereavement camp for children who have experienced the loss of a parent, sibling or primary caregiver – reveals that 81 percent of those surveyed who lost a parent as a child say they are equally or more resilient than most adults. Fifty-nine percent think they became stronger as a result of their loss.
“Right after my mom died, my grades fell,” Casey Papp recalls. “But now I am fighting back. Having gone through this, I want to be a bereavement counselor when I grow up, so I can help other kids.”
Photo by Lauren Jeziorski
This post was originally published in 2012 and is updated regularly.