Kelly Farley and Barry Kluger are the dads behind the Parental Bereavement Act.
Evermore is dedicating this Father’s Day week to bereaved dads who will always be fathers.
Kelly Farley and Barry Kluger met because of a horrible coincidence: They knew what it was like to mourn a child.
For Kluger, it was his 18-year-old daughter Erica, who died in a car crash in 2001. For Farley, it was two children — his daughter Katie, who died by miscarriage in 2004, and his son Noah, who was stillborn in 2006.
The two met several years later after Farley launched a blog that covered his own experience grieving the death of his children, and Kluger invited him on his talk radio show.
As they chatted about what they both had been through, the two fathers started talking about finding an issue they could work on together. That discussion eventually turned to better bereavement leave for parents mourning the death of their child. Soon, they became the dads behind the Parental Bereavement Act.
“Your employer will give you three or five days of bereavement leave, if you’re lucky. That’s just not enough time. You bury your child, and you’re expected to get back to work the next day. We didn’t think it was realistic.”
Updating FMLA
Right now, the Family and Medical Leave Act gives eligible employees 12 weeks of unpaid leave to care for a newborn or a sick family member, but not to grieve a child who has died. And private and public employers aren’t doing much better. An industry survey shows that 69 percent of employers give parents just three days off after a son or daughter dies. It’s barely enough time to plan a funeral.
In 2011, Farley and Kluger crafted the Parental Bereavement Act, an update to the Family and Medical Leave Act that would allow parents to qualify for unpaid leave when a child, who is under the age of 18, dies. Twelve weeks, they say, is not enough time to fully mourn a child, but it’s a start.
“It gives them time to assess what has happened to them and, maybe, start the grieving process,” Farley said.
Not so fast
By the summer of 2011, the two dads got some great news. Sen. Jon Tester, a Democrat from Montana, introduced the bill in the Senate. They hoped for quick action, which hasn’t come. But the bill has continued to get backing from lawmakers through the years. And, in February, it received bipartisan support in the U.S. House and U.S. Senate.
Supporters said it was time to help grieving parents. Senator Martha McSally, a Republican from Arizona and a co-sponsor of the bill in the Senate, stated in a news release:
“Parents coming to grips with the loss of a child should not have to worry about anything other than taking care of themselves and their loved ones,” said . “It is critically important to ensuring mourning parents have the peace of mind to be able to take the time they need while going through the grieving process.”
Representative Don Beyer, a Democrat from Virginia and a co-sponsor of the House bill, added in his press release:
“Expanding the FMLA to include parental bereavement is the most compassionate action we can take to do something, no matter how small, to help bereaved families. This legislation is a good start to make a positive change and I’m proud to support it.”
The latest endorsements make Kluger and Farley hopeful once more.
“We continue to build momentum and support, and a couple of weeks don’t go by without another senator or another representative signing on,” Kluger said. “We’re hopeful, but we’re looking at the bigger picture because there are so many people who have a stake in this.”
Uphill battle
Despite the bipartisan support in both the House and Senate, the two know that they still have an uphill battle. As the country grapples with an opioid epidemic, mass shootings and other pressing issues, helping bereaved parents isn’t top of mind for many.
Kluger and Farley continue to build momentum and support, and say that a couple of weeks don’t go by without another senator or another representative signing on.
“Bereavement leave is something where people say, ‘That’s a pretty good idea,’ but … the passion is not there,” said Kluger, who wrote a book about his daughter and her death called “A Life Undone: A Father’s Journey Through Loss.”
But, they say, it’s still worth the fight.
“I made it through the dark tunnel, and it is my responsibility to be an advocate for parents who follow in our footsteps,” said Farley, who now travels the country to work with grieving fathers and is the author of the book, “Grieving Dads: To the Brink and Back.”
Say something
To move the bill forward, Farley and Kluger are encouraging more people to speak out. So far, through an online petition, more than 120,000 people have sent messages to their lawmakers in support of the bill. There, parents also are sharing their own experiences after the death of a child.
“Three years ago we lost our first born. My husband received one weekend, then back to work,” wrote one mother. “How can you return to work when your mind and heart are somewhere else completely. We needed more time!”
Another mother wrote that her child’s father was fired for missing work to pick up their son’s ashes.
The two dads also encourage people to directly contact their representatives and share their own stories about why they support the bill, so that it gets the attention it deserves.
“I’m not discouraged,” Kluger said. “But I’ve learned the way it works. It’s not a sprint, it’s a marathon.”
Also read:
Am I Still a Father? — After his son Jon’s death, Ron Kelly helps other fathers live with their grief.
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.
A leading expert in child death investigations talks about his unlikely career.
A parent’s response to grief comes in many forms. And, after decades as a medical examiner, Dr. Thomas Andrew, among the country’s leading experts on child death, knows all about that.
Andrew is New Hampshire’s former chief medical examiner and spent decades conducting autopsies and describing to loved ones, often parents, about why somebody died.
Some are angry. Unlike in television crime shows, autopsies often don’t uncover an exact cause of death. In the case of one 15-month-old, however, Andrew did. An immune disorder that led to a widespread infection killed the child. But the parents, recent Russian immigrants who didn’t understand IVs and technology, didn’t believe it.
“They were convinced the child was killed by some sort of fluid mismanagement in the hospital,” Andrew said. “What I was trying to get across to them, which was hugely important, is that it’s a genetic disease. They needed genetic counseling. They need to strongly consider family planning going forward, but they were having none of it.”
In other cases, from the depths of their grief, they find unbelievable kindness. Andrew still gets emotional talking about the case of a seven-year-old boy who died during a pick-up basketball game. Andrew’s autopsy revealed that the boy had an undiagnosed congenital heart condition.
“When I called his father, and I explained what the findings were, he said, ‘Doc, I don’t know how you do this day after day,’ and he said, ‘How are you doing?’” Andrew remembers. “I just fell off my chair. Even as I tell the story now, I can’t believe he found the strength to ask that question. I just wanted to say, ‘Are you kidding buddy? Don’t think about me.’ That was an amazing, amazing experience.”
In his decades talking to mourning parents, “if you can imagine everything in between those two extremes,” he said, “I’ve seen it.”
An unlikely move
Andrew didn’t set out to spend his career analyzing why somebody died. It began with the goal of helping young people live. Fresh out of medical school, Andrew worked as a pediatrician — and loved parts of it, especially interacting with the kids.
“They bring so much to the table,” he said. “They are such intellectual sponges and are really curious about everything.”
But he didn’t enjoy the frenzied daily pace of ear checks and camp physicals. “I’m a plodder by nature,” he said. “I like to look at things from many different angles, and that didn’t fit with that model.”
At the same time, the cases that really engaged his intellect as a pediatrician were those that included aspects of forensic medicine, such as Sudden Infant Death Syndrome, consumer product safety issues and incidents of neglect.
Forensic medicine wasn’t a new topic for him. In medical school, a series of lectures in a basic pathology class captivated him and, as a senior, he completed a pathology rotation. Eventually, he made the switch to forensics.
Trying to answer, ‘Why?’
The job shifted from dealing daily with the living to studying the dead and explaining to their loved ones why they died. Andrew’s career took him from Ohio to New York City and, in 1997, to New Hampshire. Before retiring in 2017, he had conducted more than 5,200 autopsies to explain a sudden, unexpected or violent death.
And, with his training and work as a pediatrician, he carved out what he calls “a bit of a niche” in child deaths, focusing some of his writings on the topic. Today, Andrew’s White Mountain Forensic Consulting Services specializes in reviewing medical records and autopsies and testifying about deaths in criminal and civil cases.
Throughout his career, there was a common frustration: He couldn’t uncover why a child had died, yet he knew a family was desperate for answers.
In New Hampshire, parents often had two questions: Why did my baby die? And will this happen to my next one? They were queries that Andrew, many times, couldn’t fully answer.
But, despite their anguish and a lack of clear-cut answers, he said, it’s critical for medical examiners to be intellectually honest with families.
“To feel like you haven’t helped that family is a really empty and desolate feeling, but there is nothing crueler than a kind lie,” he said. “You’ve got to be totally honest with people when you don’t know those answers.”
And when they deliver their discoveries to families, medical examiners must be prepared to tailor their message to their audience. Empathy, he said, is critical in every conversation. If they can’t be sensitive to a specific family’s needs, they need to find a social worker or grief counselor who can. “They do more harm than good by being a bull in a china shop,” he said.
For families who seek answers, Andrew said their path doesn’t have to end with an inconclusive autopsy. He encourages parents to send their child’s case to researchers and groups, such as the Sudden Infant Death Syndrome Project, who are investigating particular health issues and causes of death.
“That’s what’s going to get answers sooner than later,” he said.
Finding the ‘trifecta’
These days, when he’s not testifying in a court case or reviewing medical records, Andrew is working on a master’s degree in divinity. He hopes to eventually become the full-time chaplain for the Daniel Webster Council of the Boy Scouts in New Hampshire. Both his faith and his involvement in Boy Scouts have provided a necessary relief from the seriousness of his day job.
And, after years of uncovering what bad decisions may have killed a person — whether it was drug abuse, dangerous driving or other unhealthy lifestyle choices — he’ll get to be on the front end of public health, providing tools for young people to help them make better decisions.
“Guiding these young people to make moral and ethical decisions, not only for their own sake, but the sake of others, it’s the trifecta,” he said. “I’ll get to do all these things that I love.”
Bryan Burgess (center) was killed in action during his final 2011 deployment to Afghanistan just 16 days before he was scheduled to return home — a few weeks shy of his 30th birthday. His parents Terry and Beth created Gold Star Parents retreat and network in his honor.
Grieving Bryan, their son who gave all, Texas parents Terry and Beth Burgess found hope by creating supports for fellow Gold Star families
When Bryan Burgess was seven years old, he and his father Terry visited a friend’s house, where the family was having an Easter egg hunt. Asked to join the fun, Bryan won handily, earning the day’s prize — a great big, cellophane-wrapped Easter basket full of foil-wrapped chocolates, toys, and other sweet treasures.
From a young age Bryan showed a special manner of caring for others.
“Some of the other moms were clearly upset because we weren’t family, you know, we were just visiting,” says Terry. “But before anybody could say anything, Bryan unwrapped the basket and stepped back from it. He said ‘dig in!’ and he let all those other kids and the moms take all the candy they wanted before he took a single piece.”
It’s one of Terry favorite stories to tell about his son, because he says, “it’s when I knew that he had a very special spirit.”
Bryan’s manner of caring for others continued, according to his stepmother Beth. “He was always very protective and security conscious,” she says. He wanted to be a policeman and would remind his dad to fasten his seatbelt in the car.
At 22, Bryan enlisted in the Army, determined to become infantry in the wake of 9/11. “As soon as he signed up, we knew that he would almost immediately go to war. And sure enough, he did,” said Terry. Bryan’s commitment had already been made when they were told. “All we could do was support him in his decision.”
Bryan loved his new military career. He served two tours in Iraq, met and married his wife Tiffany, and they had two children, Makya and Zander. He was killed in action during his final 2011 deployment to Afghanistan just 16 days before he was scheduled to return home — a few weeks shy of his 30th birthday.
The wait for answers
Upon learning the devastating news about Bryan’s death, the Burgess family was given little information about what happened. “It was frustrating,” says Terry. He and Beth, along with all of Bryan’s other close family members, traveled to Dover Air Force Base, where the bodies of the fallen are brought back to U.S. soil for the solemn tradition of the “dignified transfer.” There, they met five other families, each of whom had lost a solider in the same mission where Bryan was killed, all of whom knew very little about the circumstances.
At 22, Bryan enlisted in the Army, determined to become infantry in the wake of 9/11.
“We were all thrown together at the worst possible time and each of us was trying to piece things together,” Beth said. But the process created connections that they could lean on for years. “We had an almost immediate support system.”
Bryan’s wife decided to postpone his funeral until the rest of his unit returned from Afghanistan, widening the circle of people Beth and Terry could connect with over their loss. As they began to piece together the story, they learned that answers would be so slow to come, in part, because Bryan had been killed on day one of a nine-day classified mission.
They bonded with three of the families from Bryan’s unit — others who would receive the deeply painful honor of receiving the Gold Star pin that signifies losing a loved one in service. They remain in contact to this day. Bryan’s spirit loomed so large that four men from his unit have named a son after him.
The Gold Star parent “grief calendar”
Bryan with his wife Tiffany.
According to Beth and Terry, the number of dates that cause spiraling grief is exponential: Bryan’s birthday, the date he was killed in action, the dignified transfer, the date he was supposed to return home alive, and the last day they spent together when he was home on leave. Bryan’s final deployment began on Mother’s Day of 2010, permanently changing the meaning of that holiday. “It’s an ongoing grief calendar, all year long,” says Terry.
“We have many ways to honor and remember Bryan on Memorial Day, the Fourth of July, and Veteran’s Day, but they tend to be painful holidays,” Beth said. “It’s hard, because everyone’s very patriotic, and you know what that really costs.”
When someone says “Happy Memorial Day,” it hurts, Terry said. “For us, it’s not a three-day holiday. It’s not barbecues and mattress sales.”
The Gold Star parent network
Beth and Terry discovered new purpose in supporting a network of Gold Star parents. But they found that the label is often restricted to combat-related deaths. They wanted to change that, and give every parent who had a child die while in service to the country a way to connect and help each other.
In 2017, they established a non-profit called Gold Star Parents Retreat, It is an annual, free retreat held in Gainesville, Texas for parents who have lost a child serving in any branch of the military, under any circumstance, including training or car accidents, complications from vaccinations before being deployed, and suicide.
“We bring them together to just connect with each other, talk to each other. We may now know what they went through,” Beth said. “We don’t try to fix,” Terry adds.
“We want to give them just a tiny bit of hope,” says Beth. “You’ll never get over it, but you’ll learn how to carry it. I guess you get better at carrying it. You’re not alone — there are lots of us out here who will help you carry it.”
Read the second post in this series: “He Wants Me to Salute Him Back” — how a documentary film featuring the firefight with the Taliban that took Bryan’s life led his father Terry to strengthen support for grieving Gold Star fathers.
“Don’t Lean Into The Brokeness,” Joyal Mulheron, The Huffington Post, July 19, 2017.
Child death ‘more common’ than many realize, hits black Americans disproportionately
The connections we form with our family and friends benefit our mental health, physical health and longevity in countless ways.
So, it’s no surprise that the loss of those close relationships, particularly through death, can be devastating. In fact, research identifies the death of a significant other as one of the most stressful life events a person can experience and one with lasting effects on health. When the loved one who dies is a child, it has especially powerful consequences.
Relationships with children affect the health and well-being of parents, who expect to precede their children in death, throughout their lives. When children are dependent on parents, parents feel a sense of responsibility to keep their kids safe.
For parents, especially, the death of a child is a traumatic life event, and it’s more common than most Americans realize. Here at the University of Texas-Austin’s Population Research Center, our research shows that by the age of 50 about eight percent of Americans have a child who has died. And it’s even more common for older parents. By age 80, almost one in five parents has lost a child.
And when we look further into our research, we find that black Americans, in particular, are even more likely to experience the death of a child. Throughout their lives, black Americans lose more family members than white Americans. By age 60, black parents are twice as likely as white parents to have lost a child. And by age 70, they are about three and a half times more likely to have a child die.
Although black Americans lose more family members than white Americans throughout their lives, surprisingly little information is available about the long-term health consequences of race differences after a family member has died.
Documenting the consequences
Through our research, the primary goal is to document the extensive health consequences after a child’s death. We use several datasets to examine the outcomes for younger and older parents when a child dies and find that the death of a child is associated with numerous health risks for parents over the years.
Losing a child, for example, puts parents at increased risk of cardiovascular disease, physical disability, dementia and death. The loss of a child also increases risk factors that undermine health, including risky health behaviors, such as smoking, and poor mental health, such as depression.
Although black and white parents are similarly affected by the death of a child, racial inequality and disadvantage is striking for black parents for two primary reasons. Black parents are substantially more likely than white parents to lose a child during their lifetime. And, when compared to white parents, they are more likely to face inadequate access to health providers and other resources and poor health outcomes even before the loss of a child. The death of a child adds to their already higher risk of poor health.
More work to do
Research clearly shows that the loss of a child marks a turning point in a person’s life, one that could launch them toward a cascade of health problems. But there are ways to help them early on in their grief. Our findings underscore the importance of identifying parents who have lost a child and building early intervention strategies to reduce long-term consequences for parents.
Mulheron left her career to immerse herself in the science surrounding the fallout of losing a child at any age or cause. She then started Evermore — a nonprofit to change the national response when a child dies.
Evermore organization will tackle why and how
More. Bereaved. Families.
Every day, news coverage reports the death of sons and daughters of all ages dying from an array of causes. And the coverage continues. Last week I, like many others, was thunderstruck by the news that Jeremy Richman, Sydney Aiello and Calvin Desir had died.
More. Bereaved. Families.
I know these families’ lives, like my own and many others, are forever divided into two categories:
Life Before and Life After.
But most of all, I have come to know unambiguously, that more could — and should — be done to help bereaved families in the United States.
Observing from the sidelines is no longer an option.
My own Life After started in 2010 after the death of my daughter. And, over time, as I watched the news that detailed the death of yet another child — from the Sandy Hook massacre and Aurora Theater shooting to the deaths of Trayvon Martin and Hadiya Pendleton — I had a very real sense of the heartache, injustices, and lifelong challenges these families would face. I was hit with the conviction that I must do something — even if I did not yet know what that might be.
I decided to leave the only career I had ever known and began to immerse myself in the science surrounding the implications of losing a child and the stories of those left behind.
Americans from all walks of life graciously and patiently shared with me how their lives were changed by one of life’s most tragic experiences. I have had the honor of learning from families, medical providers, members of law enforcement, therapists, researchers, employers, and many more.
And now’s the time to get off the bench to share what I’ve learned and launch a national conversation about child death, its implications, so we can address it for what it is:
a public health crisis.
To raise awareness, encourage funding and push for change, I founded Evermore — a nonprofit that recognizes that when a child dies, what happens next can make all the difference.
Personal Stories, Factual Analysis
We will use this platform as part of our campaign to de-stigmatize the issues bereaved parents face and advise practitioners, employers and others on what bereaved families need (and don’t need).
Evermore has a unique perspective to offer our nation, our communities and our families. We are able to not only share individual anecdotes, but also provide factual analysis informed by research and partnerships with leading scientists and policy experts.
You will see what we see, including how we, as Americans, can and do stand by our families, neighbors, and communities during tragedy.
In a time when our nation seems to be marked by division and dissent, this will be a place where families — and those who support them — can see hope, help and love. You will be able to learn from one another and find solace in sharing stories of slog and promise. This blog will also be a forum to highlight providers who work with families: those who bear the burden of telling parents and those who absorb our traumas. This blog will be authentic and genuine.
Together we can make the world a more livable place for bereaved families.
Evermore’s Ground Rules
There are a few key rules, however…
Every child counts. Whether young or old, before independent life has begun or as an octogenarian, every grieving parent and family deserves to be acknowledged, supported and offered the opportunity to cope with “us.” Whether felon or Park Avenue, we share a common humanity based upon the invisibility of our love, the uniqueness of our children, and how we brave the world without them.
Siblings count too. Siblings, young and old, are often forgotten. They, too, deserve to be acknowledged and supported for their loss.
Everyone has a role to play. Every community organization — public or private — has a role to play. From emergency responders to medical examiners, funeral homes to hospitals to employers. From grocers to recreational centers to caregivers and everyone in between, each institution can support families in their own ways. We hope all will join us in making this change.
We hope you will tune in regularly and give us feedback on the issues addressed and the personal stories covered. Too many people look away. Thank you for reading. We promise to do all we can to make it worth your time.
