Your life is a box, and this grief is a box inside that box, and it’s occupying a large portion of it. And as life continues, the bigger box gets bigger and that grief, it doesn’t change in size. It’s still there, but there’s just more room in your life, other aspects of it.”
— Chris
When a child dies, what happens next makes all the difference. Evermore works to de-stigmatize the issues bereaved parents face and advise employers, law enforcement, schools and health care about what grief stricken families need to survive one of the worst traumas a human can experience. Photo by Jonatán Becerra on Unsplash.
The repercussions of a child’s death extend far beyond the grief of their parents, siblings and family. It’s life altering, of course, but research shows it can even be life ending too.
Just look at the headlines.
In February, longtime soap opera star Kristoff St. John died from heart disease with alcohol as a contributing factor, according to an autopsy. The morning of his death, his ex-wife told Entertainment Tonight that the actor had called her and claimed he was seeing their son, who died by suicide in 2014. “He was just so depressed,” she said.
Hours after her adult son, a victim of the recent New Zealand mosque shooting, was buried, Saud Abdelfattah Mhaisen Adwan died from a heart attack as she mourned his death. A family friend told the New Zealand Herald that she “couldn’t put up with the sorrow and sadness of losing her son.”
And Jeremy Richman, 49, died of an apparent suicide in March, just more than six years after his six-year-old daughter Avielle was killed during the Sandy Hook Elementary School shooting.
According to the Institute of Medicine, losing a child is one of the most significant and enduring stresses an individual can experience. Parents are more likely to face long-term psychological, spiritual, social and physical hardships, according to researchers.
And, with an estimated 400,000 American families grieving the loss of a child each year, these hardships, including family solvency and economic stability, have ripple effects for the entire country.
More depressive symptoms, earlier deaths
Grief might be silent, but it can quickly alter the mental and physical health of a parent whose child has died.
Researchers have uncovered a link between child death and the early death of parents. Danish researchers say the death of a child is associated with an increase in mortality from both natural and unnatural causes, such as accidents, drug overdoses and suicides, in mothers, and an increase in mortality in unnatural causes among fathers.
When a child dies, life for parents becomes an enduring struggle. Even 18 years after a death, bereaved parents reported more depressive symptoms, poorer well-being and more health problems, one study found. They also were more likely to experience depression and marital issues.
Yet another study determined that mothers were more at risk for psychiatric hospitalization as many as five years after the death of their child.
Substantial financial hardships
The fallout after the death of a child is more than just physical and emotional. Parents who are mourning their child grapple with on-the-job and money issues too.
Researchers are just beginning to examine the full financial impacts, but studies show those ramifications include higher medical expenditures, loss of wages or employment, loss of productivity and reduced future income.
The Family and Medical Leave Act of 1993 allows covered employees up to 12 weeks of unpaid leave to care for a newborn or a spouse, child or parent with a serious health condition before they return to work. The law, however, doesn’t give parents the right to take time off to grieve the death of their child or even plan a memorial. And employers aren’t doing much better. They tend to give their employees just three or four days of paid leave when a child dies.
So it’s no surprise that one study found that the economic effects are “substantial,” citing costs associated with funeral and medical expenses, along with “presenteeism” at work. That’s when a person goes to work, but isn’t as productive because of sickness, injury, anxiety or, in the case of bereaved parents, grief.
Sibling impact is immense
Siblings also face an uphill battle as they process the death of their brother or sister and witness the grief of their parents. The Handbook of Bereavement Research: Consequences, Coping and Care says that siblings can experience “agitated depression, chronic illness, enduring and intense clinical reactions, such as guilt, and significant disturbances in self-esteem, job and school performance and interpersonal relationships.”
In fact, a study of more than 5 million people in Denmark found that when a sibling dies during childhood, their brothers and sisters face a stunning 71 percent increased risk of death from all causes. Those higher risks are especially predominant during the first year after a sibling’s death and among siblings of similar ages and the same sex.
And that’s just what we know.
Despite the profound repercussions to families and communities when a child dies, there’s no comprehensive review of child loss literature. No national data has been collected. No universal clinical guidelines exist to help those who are suffering. There’s not even an accrediting body or treatment standard for grief therapists.
We must do better
At Evermore, we’re working to raise awareness, money and support to address the difficulties families endure when a child dies. We look forward to highlighting the stories of researchers and groups who are effectively supporting families and spotlight areas where more help is desperately needed.
When a child dies, what happens next makes all the difference. This article brings focus to the cascading consequences of parent grief that our nation’s lawmakers and changemakers can do something about. Photo by Gus Moretta on Unsplash.
When a child dies, a family deeply grieves. They plan a funeral, gathering pictures and keepsakes to share at a memorial. Friends and neighbors bring over food, but know it’s not enough. And then life continues, though it’s never the same.
That’s what the aftermath of a child’s death might look like to observers who haven’t experienced it themselves. But for those who are mourning a child, their lives aren’t just defined by the work to pick out a grave site during their darkest hour or decisions about what to do with their child’s belongings.
Parent and sibling grief is ongoing. Years later, they may crumble when a child’s favorite song pops up on the radio or when the entire family is gathered — except their son or daughter.
Reminders and grief triggers don’t just appear during family celebrations or small private moments. They also come crashing into the lives of bereaved parents thanks to government agencies, long-standing policies, employers and retailers that we all deal with daily.
When a child dies, what we do next makes all the difference. Here are just a few of the cascading consequences grieving parents face that we can do something about.
Job and income loss
The Family and Medical Leave Act of 1993 allows covered employees up to 12 weeks of unpaid leave to care for a newborn or a spouse, child or parent with a serious health condition before they return to work. The law, however, doesn’t give parents the right to take time off to grieve the death of their child or even plan a memorial. And employers aren’t doing much better. They tend to give their employees just three or four days of paid leave when a child dies. And some employers offer even less if a parent is grieving a stillborn baby. In many cases, parents return to work just days later, so they can hold on to their job.
Lawmakers in Washington, D.C, are considering the Parental Bereavement Act of 2019 which would give parents the time to mourn.
But until legislation is passed to actually tackle the issue, many parents will continue to face an impossible question: Can they afford to give themselves time to grieve?
Ongoing reminders of their loss thanks to social media and big tech
Washington Post staff writer Gillian Brockell recently detailed her experience on social media after her baby was stillborn. During her pregnancy, like many excited expecting moms, Brockell fed her various pages with details of her growing belly or searched online for nursery items. At the same time, tech company delivered to her feeds targeted ads for maternity clothes and baby gear.
But even after she posted about her stillborn son, those same ads still appeared. And, what’s worse, when she attempted to opt out of them, she started seeing ads for nursing bras and tips for getting a baby to sleep at night. The algorithms assumed she’d given birth.
Soon after writing about her experience, tech companies reached out to Brockell to apologize and said they were working to make changes.
Others intentionally and cruelly target bereaved parents. Online trolls regularly target parents of children who died in mass shootings and even the flu.
CNN recently reported that groups who oppose vaccinations are targeting parents of children who died from the flu, posting on the parent’s Facebook page that their child never existed, vaccines killed their son or daughter or even that the parent murdered the child.
And Lenny Pozner, whose six-year-old son Noah was murdered at Sandy Hook, has filed a defamation claim against Alex Jones of Infowars for pushing conspiracy theories about the shooting. He’s also focused on getting tech companies to stop allowing these hoaxes to spread on their platforms, trying to navigate the bureaucracies that govern these massive corporations. Pozner is making his eighth move in nearly as many years because social trolls are continuing to threaten his life.
Unexpected — and sometimes unconscionable — costs
Two years after a police officer shot and killed 12-year-old Tamir Rice, the city of Cleveland sent a letter to Tamir’s estate seeking $500 to cover the ambulance ride and other services he received after the shooting.
The city quickly apologized and promised that Rice’s estate would never have to pay the bill, according to USA Today. Cleveland’s mayor called it a “mistake” that the bill was not flagged before it was sent and said officials would look for ways to keep it from happening again. For the boy’s grieving family, however, Rice family’s attorney said the bill added “insult to homicide.”
Unfortunately, billing issues like these are all too common for families with children who have died after an accident or crime. But, in most cases, these families don’t have the public platform to raise their concerns or get recourse.
Roadblocks in the judicial system
In cases where a child died at the hands of another, parents often grapple with unexpected roadblocks when they attempt to get justice or compensation.
In the state of Washington, for example, parents can’t sue for wrongful death when their adult child dies. Some are pushing for a change to the law.
In Maryland, parents are battling a system where soliciting murder is a misdemeanor, which means offenders face fewer consequence for their crimes.
Across the country, federal child safety protection laws aren’t enforced in the same way in all states, leaving some families with no criminal recourse when their child dies while being watched by a childcare provider who is exempt from the rules.
And the Wall Street Journal recently uncovered issues with Care.com, the popular online platform for families seeking care for children and the elderly. The newspaper found incorrect listings for hundreds of day care centers that claimed to have state licenses and nine caregivers with criminal records who committed additional crimes while they were watching children or the elderly. In one case, twins died at a day care center that wasn’t properly licensed. District attorneys in California are now investigating the platform.
At Evermore, these are the kinds of experiences we hope to put into focus for our nation’s lawmakers and changemakers. Parents will never “get over” the death of a child. But, as a society, we should make every effort to make their path through the rest of their own lives just a little bit easier.
Cynthia with Sarah-Grace.
My husband Brad came home to tell me what he had learned minutes earlier. Sarah is gone… Our Sarah-Grace. Our beautiful 24-year-old daughter. Dead.
With three words and within mere seconds, I was shattered, gutted, disoriented.
Any word that implies destruction, pain or confusion is relevant to that moment, but none alone, or combined, capture the devastation and confusion I felt after hearing those words.
Two years later, I’m trying not to evaluate a string of heavy days where my grief is so raw it feels frighteningly new.
I remind myself that grief has nothing to do with functioning well or poorly, and the characteristics of it on any given day don’t mean much.
Instead, I’ve learned that grief is my constant companion with a rhythm and intensity that’s unpredictable and often overwhelming.
Processing death, understanding grief
After Sarah died, I’d catch myself thinking that I’ll be relieved of this suffering because I’m trying so hard and I’m doing my best.
The process of understanding that Sarah is dead, however, has been an agonizing and bizarre evolution.
First, there were the feelings of anticipation. Most days during the first year of grief, I’d tell myself, I can’t survive this. Then, Yes, I can. Just hold on. This will go away. When Sarah comes home.
For a second, relief soothed my broken heart until truth slapped me in the face. No! That’s not true.
These battles with reality went on for months. I don’t know what made them stop, but one day I simply noticed they had ended. ‘I’ve been defeated,’ I thought. ‘Truth and reality have won. I know the truth about Sarah will never change.’
In more grateful moments, I marvel at the way my psyche works to gently integrate this truth into my consciousness.
When the words, Sarah can’t be gone, pop into my head, I recognize that my grief is changing. But it’s slow and subtle, and grief is still wildly and strangely independent of my other emotions, making any day unpredictable.
And these days, I have two kinds of days, OK/fine or bad/terrible. Both are unsettling. On the bad days, I wonder, will I be this way forever? On the OK days, I wonder, does this mean I’m over the trauma of Sarah’s death? I know the answer to both of those questions, but I’m new in this process and I don’t know what the future will bring, so I have to ask.
All that I’ve learned as a grieving mother is only vaguely describable and not very teachable.
I remember in the early days being told that my grief will change. After two years, I can say that’s true, but I can’t really explain what’s changed other than, it’s different. Or, how it still feels painful, but in a different way. Or, what occurs to make that happen other than an excruciating breakdown of life and self, followed by the arduous rebuilding of everything. And that’s not very helpful.
So, when I read that people feel their child, or that they carry their child’s heart in their heart, I wonder how that came to be? What am I doing wrong that I don’t have that? Is it even true or possible? What does that even mean?
But I know there’s nothing of what I will come to understand about grieving and surviving the death of my daughter that can be fast-tracked or transferred from one person to another.
I know I’ll find answers because parental grief is the most persistent and demanding teacher I’ve ever encountered. The insights are so painfully acquired.
Charting a path toward survival
I can’t imagine ever breathing easily when I think of or say the words Brad came home to deliver. I don’t even write them with ease.
I’m not innately wired to cope with the death of my child. Instead, I must consciously try not to fight against my grief and be, as is often said, present with it. That’s the second hardest thing about Sarah’s death — the daily decision to accept my grief and keep going. But I made a commitment to do just that on the day Sarah died.
That commitment was made during a desperate phone call to Brad’s brother Blaine as the two of us drove to the mortuary. Blaine and his wife, Cheryl, buried their only child, Kyle, 18 years and 5 months before we would bury Sarah. Brad and I had gone to the mortuary with them. We were broken-hearted for their loss and grateful we weren’t in their shoes.
“How do we do this, Blaine?” I sobbed. “How do we even survive?”
“You really have two choices,” he said. “You can either let it completely destroy you or you can try to keep living.”
Somehow, I got through the worst weeks of my life. Later, when time demanded a routine, I was unprepared for what was required of me to heed Blaine’s counsel. The seeming ease and comfort of giving up, rather than trying, has always been alluring.
So, I remind myself of the promise I made when Sarah died: That through every dark, gut-wrenching, lonely day, I will keep trying. I will slog through hell.
What I learned in the conversation with Blaine still grounds me. Surprisingly, it’s not that he pointed out that we have a choice. Rather, it was the chilling summation of his advice, spoken with heavy, palpable sorrow. After giving us our two options, he added, “and I don’t have to tell you what I chose.”
I cry thinking about the price that was paid, so he could impart that wisdom.
Resolving to do it again
When Sarah died, I expected my grief and faith to be companions, but grief is lonely. At the end of the day, I’m alone with thoughts, questions and fears that make me an inhospitable environment for the whispers of spirituality. Yet, I still hold on to my faith, knowing a power beyond my own helps me through the minutes and hours.
And each day, I resolve to do it again, though it’s never an easy decision.
Doubt and dread can strike without warning. It’s a constant fight through pain and confusion. But, I want to keep trying, for those I love and for those who love me.
And, missing Sarah as I do, I hope and pray that someday, somehow, I too will know what it means to carry her heart in my heart or feel her with me.
Sarah’s death on Nov. 7, 2016 brought devastation, pain and confusion to my life with a power that could have destroyed me, Brad, our two sons and youngest daughter. Today, one of the most important truths that keeps me going is Sarah wouldn’t want that to be her legacy. She doesn’t deserve it either.
So, to honor Sarah and her indelible place within our family, for Brad and our wonderful, grieving children, I do the hardest work I’ll ever do, even when it feels impossible.
I choose to try. To keep living.
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.
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.
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.