Jason Edwards grew up in the small town of Graham in West Texas where being gay was not accepted. Pegged as the class ‘gay boy,’ he was bullied relentlessly. His dad tried to spark his interest in sports and Edwards recalled being out on the field spinning around like Wonder Woman. “I was always different,” he said. On June 7, 2000, Edwards’ sister, Bella, was killed in an automobile accident. “It was like a part of me had been cut off—and I was just bleeding,” he said.
Edwards and Bella were queer siblings. They had an inseparable relationship, supporting each other throughout their lives. “I knew if she was a part of my life, I would always be OK. And then, I was not. I was not OK at all,” he shared. Edwards described the physical feeling of his sister’s loss as if his life source had been pulled out of his chest and replaced with an uncontrollable shake. He stopped writing for years, stopped calling his friends and became a recluse. Eventually, he ended up moving to start his life over because he could not handle the memories.
Edwards now lives in Austin, Texas, with his husband Matt. In June of 2015, same sex marriage was declared legal in all fifty states. They were engaged that month and married in August of 2016. “We felt that we deserved the same right to be legally married as anyone else did,” said Edwards. This Pride Month has been about spotlighting our queer brothers and sisters and continuing to highlight the societal shifts occurring in our country.
However, on June 22, 2022, the Texas GOP adopted an anti-LGBTQ platform declaring that being gay was ‘abnormal’, which opposes all efforts to validate transgender identity. This year, Texas lawmakers passed bills banning puberty blockers and hormone therapy for transgender kids and restricting the college sports teams that trans athletes can join. Edwards remains optimistic. “When I am at work, I see parents come in with t-shirts that say, ‘Protect Trans Kids.’ The world is changing, and I think we are winning. It is just an uphill battle.” The fight for bereavement care is an uphill battle as well. Being bereaved with no care only compounds the pain of marginalization.
And there are still so many people who do not understand what it is like to be marginalized. If we all woke up tomorrow and the world was different, men were supposed to be with men and women with women, maybe then people would understand how alienating it feels being the minority. Then people might understand how natural it feels to be with the one you love. Oscar-nominated actor Elliot Page said, “This world would be a whole lot better if we just made an effort to be less horrible to one another.”
Edwards remains optimistic and hopeful that our future has no prejudices, a world where understanding and acceptance replaces hate. He tries to fill his days with beauty, love, friends, art, poetry, music, and good food. “We are all rushing towards death. We just need connection,” he said. “What would happen if we all put our differences aside? We could make real change. If we take the time, we can find something in common with everyone.”
Camp Erin is the largest national bereavement program for kids and teens ages 6 to 17 who are mourning the death of someone close to them. Photo courtesy of Frank McKenna.
Evermore is giving focus to younger siblings who have suffered the death of a brother or sister. During the summer months, many surviving siblings are away from the structure and support system that school provides. Being with caring adults and peers who share their experience is extremely important. Bereaved parents are often so devastated by the death of their child, they can’t be there for their surviving children in the way they want to and need to be.
To some, Karen Phelps Moyer seems to have immersed herself in sadness and grief. In 2002, Moyer, a mother of eight who lives in southern California, helped found Camp Erin, the largest national bereavement program for kids and teens ages 6 to 17 who are mourning the death of someone close to them.
The free weekend camp serves more than 3,600 campers who attend camp in 53 sessions across 46 locations. There, among others who are mourning, they talk about their loved ones and their grief, and they have some fun too.
It’s one of several efforts Moyer is involved in to support people navigating life’s hardships. Eluna, the nonprofit that runs the camp, was founded in 2000 by Moyer and former Major League Baseball pitcher Jamie Moyer. Eluna runs a series of programs supporting thousands of children and families annually all at no cost to families, including Camp Mariposa, a program for kids affected by a family member’s substance abuse. Moyer has also launched a business to help widows date again.
Karen Moyer co-founded Camp Erin — the largest national bereavement program for kids. “I think that no child should grieve alone. I really believe that and live that,” Moyer said.
For many, discussions about grief and death aren’t easy, but Moyer says she finds hope in her work with those who are struggling.
We checked in with her to learn more about her work with Camp Erin and how grieving children can benefit from attending a grief camp.
Q. How did the foundation come about?
A.I was married to a professional baseball player and through our journey, we were around other people and kids, who were in some type of distress. We met a young woman named Erin through Make-A-Wish and got to be a part of her last two years of her life as she battled cancer. We knew her family. I had known about a [bereavement] camp that was in the area where I grew up in Indiana.
When she was passing, we thought this would be a great way to honor her — to model that camp and name it after her. We were thinking about her sisters as they grieved. So Camp Erin started. We partnered with the hospice that her family had used. And it grew exponentially across the United States and Canada as a model for camp for kids ages 6 to 17 who grieve the loss, sometimes multiple losses, of people close to them.
Q. How do kids experience grieve differently? What’s most difficult for them beyond the loss?
A.I find children to be pretty resilient. I find it depends on how they’ve lost their loved one.
A tragic loss, certainly the suicide losses, are much harder to deal with. We teach them how to memorialize them and how to remember them. We give them an opportunity to say goodbye.
Q. What is it about this issue that has touched you so much that you would want to be around it all the time? Death is a hard thing to talk about for so many.
A.I grew up in a family where my dad’s dad was an undertaker. And when I was with my grandfather when he was passing, I was comforted by hospice.
It does take a unique set of personality traits to comfort these kids, but my whole heart is just with them. I feel their sadness and I’m grateful that there is a place for them to go and have fun and they are getting better and they don’t even realize it.
Q. What tips do you have for parents who are sending their children to a program like yours?
A.Trust the history of what we’ve been doing. Trust the incredible model and that we partner with people who are experts. This is what professionals who work in grief do all the time, working in grief, whether it’s a bereavement organization or hospice.
Karen Phelps Moyer and some campers.
And actually, I think, at the end of the day, there is gratitude because I think when parents are grieving the loss and you are just trying to hold it all together, having their child at Camp Erin becomes a moment where maybe parents can focus on themselves. They know their child is being taken care of, and it’s helpful to them, but also helpful to parents.
The camp is a silver lining in a bucket of sadness.
Q. Are there any specific stories or moments at a camp that you’ve experienced that have really stuck with you?
A.Every time I go to camp, I am touched. And my heart is absolutely filled with these kids and their stories and their sadness and their smiles and their laughter that they get in during those 2 1/2 days at camp.
I’m always touched by the littles. They are as young as six at our camp. Typically, on a Friday, they are pretty exhausted because of their week, but then they get to release these emotions and it turns into fun. I’m very touched by the teens. Who in their teens wants to go to a grief camp? But they come, make friends and now with social media, they can stay in touch. It becomes quite a gift. And I marvel at the kids that come as campers and come back as counselors.
Q. That happens often?
A.Yes, it does. And truthfully, it’s the kids who kicked and screamed when they came to camp … A lot of them are still continuing to heal from sadness that they had losing a loved one when they were younger, but they are giving back. On so many levels, there are so many beautiful things to witness.
Q. What are your hopes for the future of Camp Erin?
A.I think that no child should grieve alone. I really believe that and live that. My hope and my wish is that there are Camp Erins everywhere.
At the same time, as we figure out how to reach more kids, we must recognize that grief is important to discuss and to support on all levels and to sometimes just be a good listener and just be somebody who gives good hugs. That, in and of itself, can go a long way.
47% of surveyed kids under age 18 believe their life will be harder than it will be for other people. Photo by Chinh Le Duc on Unsplash.
Evermore’s next few stories will have a “Back to School” theme focusing on both younger children and college-aged students. We are giving focus to siblings who have suffered the death of a brother or sister. Returning to school without their siblings can be painful reminder. Being with caring adults and peers who share their experience is extremely important. Bereaved parents are often so devastated by the death of their child, they can’t be there for their surviving children in the way they want to and need to be.
For centuries, children have grieved the death of a relative or friend. But, even just a couple of decades ago, there wasn’t really a field called “child bereavement” or a central organization to support the groups and individuals across the country who do the hard work to help kids in mourning.
To fill in the gaps, the National Alliance for Grieving Children formed nearly 25 years ago to create a network of people who provide services for kids who need them. And, today, the alliance’s membership has grown to 1,100. They include representatives from bereavement centers and hospices, along with social workers, child life specialists, school employees and others.
Vicki Jay, the alliance’s chief executive officer, said the lag to launch a bigger effort to support grieving children boils down, in part, to people’s discomfort with the topic.
“There are two natural things in life — birth and death,” Jay said. “We do everything in the world we can to plan for, anticipate and celebrate birth. And we, as a society, are not so eager to talk about the second topic. As a society, we haven’t done a lot of good work through the years of recognizing the importance of supporting people through that process.”
Vicki Jay, Chief Executive Officer.
What’s more, grieving children make adults uncomfortable. “We want to think kids are resilient,” she said. “They’ll be OK, and they’ll bounce back.”
In reality, she said, adults just don’t know what to do about kids who have experienced a death. “It’s easier to think that kids will be OK than trying to figure out how to help them,” Jay said. “Putting kids and grief in the same sentence makes a lot of people uncomfortable.”
But that’s what Jay and others at the alliance do on a daily basis. And their work has helped to uncover statistics that show that bereaved kids need help. Along with local grief support centers and the New York Life Foundation, the alliance conducted a national poll of 531 grieving children and teenagers, ages 18 and under, who were mourning the death of a parent or sibling.
The results, according to the alliance’s website, uncovered some sad realities:
86% of respondents said that they wish they had more time with their loved one, with 69% saying that they wish they could talk to their loved one, just one more time.
75% say the pervading emotion they currently feel is sadness, with feeling angry, alone, overwhelmed and worried being top other emotions.
73% said that they think about their loved one every day.
47% believe their life will be harder than it will be for other people.
46% cannot believe it is true.
Children also report trouble sleeping and concentrating on school work and that they’ve acted in ways that might not be healthy, according to the survey.
“When there is a death, I, as an adult, have a need to do something,” Jay said. “I call somebody. I cry. I pray. I research. I reach out. I make a casserole. I do something. And kids have that same need. Their tools are just different. We need to give them something to do that allows them to take that inside expression that they have and express it outwardly. … Our goal with kids is to give them the tools to get that inside stuff out.”
To help grieving kids, the alliance provides educational opportunities for the professionals who work with them and also connects children with services around the country. And, each November, it holds a National Childhood Bereavement Awareness Month to raise awareness about the needs of bereaved children.
Megan Lopez, National Program Director.
Jay, along with Megan Lopez, the alliance’s national program director, shared some tips for adults who are caring for grieving kids to help them understand their emotions. Here’s what they suggest.
#1 Talk about hard things
Adults often want to protect a child from hurtful or difficult-to-understand situations. But, when they do that, Jay said, they miss out on opportunities to have important talks about life and death. “We have multiple opportunities to help kids understand life and death and grief, and we need to capitalize on those,” she said. When those conversations take place, she said, you’re empowering them with information and knowledge.
#2 Expect unexpected reactions
Sobbing, deep sadness, exhaustion, changes in appetite and trouble sleeping are considered common reactions to grief. But, for kids, sometimes they just want to play or go back to school. “It doesn’t mean they’re not grieving,” Lopez said. “It means they’re a kid.”
#3 Look for change
Kids react to grief in any number of ways. “It looks like change for them,” Lopez said. “Maybe they were a very outgoing child before and now they’ve become more introverted. Maybe they were struggling with school and now they are really overachieving.”
What you’re looking for, she said, are changes to their typical behavior at home and school.
#4 Help them open up
It can be as simple as coloring a picture or playing with play dough together, Jay said. At night, she suggests, ask them what the best and worst thing is about their life. Find out what they’re excited and worried about.
Expect questions to come up months or years after the death as kids navigate through different developmental stages. “Give them multiple opportunities and modalities to help them express what’s inside and ask questions,” Jay said.
#5 Give them a safe space
Parents, of course, will want to ensure that children know they can go to them with questions. But adults also are grieving a loss. Lopez recommends providing other sources, who might be more removed from the family’s pain, where children can talk about their feelings. It might be a support group or with trusted friends.
“It’s about meeting the child where they are,” Lopez said. “Not giving them more information than they are ready to process, but being willing to keep having conversations. It’s not one and done.”