National Bereaved Parents Awareness Month: Living with Grief

By Cynthia Prestidge

Grief teaches a mother lessons she never wanted to learn

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.

What I’ve learned about grief

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?”

Sarah-Grace Prestidge offers food to a group of children

“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.

Five Books on Grief and Loss

By Terri Schexnayder

Five new releases have landed in bookstores and audible programs recently. Each one delivers the topics of grief and loss through unflinching honesty with the author’s personal story—some even include moments of humor. We encourage you to read and share with bereaved family and friends these selected books.

Dina Gachman’s self-help book, So Sorry for Your Loss: How I Learned to Live with Grief and Other Grave Concerns, was released on April 11, 2023. Since losing her mother to cancer in 2018 and her sister to alcoholism less than three years later, the author and journalist has dedicated herself to understanding what it means to grieve, healing after loss, and the ways we stay connected to those we miss. Publisher’s Weekly called Gachman’s book “a poignant, personal exploration of grief.” 

Regarding her esteem for Joyal Mulheron and the nonprofit she founded, Evermore, Gachman said, “after going through a traumatic in-home hospice experience with my mom, I was so happy to discover Evermore, and find out that there are people out there trying to reform bereavement care in the U.S. Until I went through it, I had no clue how emotionally, physically, and spiritually depleting and devastating it could be. I was so moved by Joyal’s story, and by the stories of others I spoke to for the book. So many of us out there are suffering through caregiving or the loss of a loved one, with little help, and Evermore’s mission is one I fully embrace. We need more help and more understanding around death, grief, and loss at home, at work, and as a society.” 

In an excerpt from Gachman’s chapter about hospice, the reader learns more about Joyal Mulheron’s own struggles with the system after the loss of her infant daughter Eleanora:

Bereavement care in America is broken, if it even exists, says Joyal Mulheron, founder of Evermore, a nonprofit focused on improving the lives of bereaved families through research, policy, and education. … She saw firsthand how “broken” the system was when insurance companies would call her during her daughter’s pediatric in-home hospice and ask how many days or weeks it would be until her daughter passed away. Mulheron said she had twenty-three providers, but she was the one doing the caloric calculations, making sure her daughter was getting enough nutrition to keep her comfortable. … During that time, the company she worked for asked for her resignation, since she was caring for her daughter and could not devote herself to the job as she once had. Now, she is working to change those systems that were so broken for her, and for so many others.

After avoiding her grief from the loss of her father to bone cancer when Laurel Braitman was a child, the New York Times bestselling author eventually faced—and embraced—her pain in her thirties. What Looks Like Bravery: An Epic Journey Through Loss to Love, released by Simon & Schuster on March 14, 2023, is referred to as the “hero’s journey for our times.” 

Her literal journey through mountainous regions, encountering life-threatening wildfires, and visiting with others about their grief along the way, Braitman’s powerful memoir “teaches us that hope is a form of courage, one that can work as an all- purpose key to the locked doors of your dreams.” 

She shared how she, like so many of the children she met with, felt shame after their loss. “I became a facilitator to help grieving kids who lost siblings or who were ill … What I learned from them was that shame is really just another way to control the uncontrollable.”  

Released on April 4, 2023, A Living Remedy: A Memoir by Nicole Chung, a Korean-American writer who was adopted by white parents is personal and addresses an important topic. Chung not only writes about the loss of both her father and mother to illness within the span of a few years but tackles the issues of class and the inequities of medical care in the United States. She witnessed this firsthand, especially when her father was dying, noting his death was “no doubt exacerbated by his lack of health insurance and limited access to care in the small Oregon town” where Chung grew up.

Chung shared an interview with LitHub journalist Hannah Bae. “I felt compelled to write about grief but also this common American experience, where so many people in this country who are not fantastically wealthy end up facing illness or loss without all the resources and support that we need.” 

On Grief: Love, Loss, Memory by Jennifer Senior, released on April 4, 2023, is based on an intriguing story around the journal of a young man Bob who died on 9/11 at the World Trade Center. Atlantic writer Senior interviewed Bob’s parents after his death. Years later, she shared with NPR’s Rachel Martin her desire to find the truth behind why the journal ended up with Bob’s fiancé Jen rather than his mother. “[His mother] was so upset and said, ‘How can you give away the last thing our son ever wrote?’ It was – it is a chance to have – to hear his voice one more time, to, in a weird way, be in conversation with him …” 

The nagging question for Senior became, why didn’t Jen give the journal back when Bob’s mother asked for it? On Grief answers that and provides a larger conversation about the book’s title.

The Archaeology of Loss: Life, Love and the Art of Dying by Sarah Tarlow, released on April 20, 2023, shares the archaeologist’s shock and grief when faced with the sudden loss of her husband Mark. Called “a fiercely honest and unique memoir,” it reveals how nothing could have prepared Tarlow, after years of studying death in her research, for the loss of someone she loved. About writing her memoir, Tarlow said:

“When you find your husband lying dead, you think you will not forget a single detail of that moment. As an archaeologist, I like to get my facts right … I am excavating my own unreliable memory. I cannot go back and check.”

Resources:

So Sorry for Your Loss: How I Learned to Live with Grief and Other Grave Concerns

What Looks Like Bravery: An Epic Journey Through Loss to Love

A Living Remedy: A Memoir

On Grief: Love, Loss, Memory

The Archaeology of Loss: Life, Love and the Art of Dying 

Time: How to Connect with Loved Ones After They Die

The Guardian: The Archaeology of Loss

WNYC Memoir About Avoiding Grief

NPR: Grief Book Has Its Roots in the Long-Lost Diaries of a 9/11 Victim

LitHub Nicole Chung on Writing Through Grief and How to Begin Again

Pride Month Spotlight: Jason Edwards

By Jena Kirkpatrick

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. 

“There was no help for me,” said Edwards. He found his anger and sadness to be something unlike anything he had ever experienced in his life. The Psychological Bulletin reported in November of 2011, “Experiencing the death of a loved one during childhood or adolescence has long term effects on biopsychosocial pathways affecting health.” Navigating this loss was compounded by his schizophrenia. Edwards said he is not ashamed of his condition, but when a schizophrenic experiences a trauma, they need extra help. “It is ridiculous, it is awful. Public healthcare is a joke—you sometimes wait eight hours to see a doctor for fifteen minutes,” he said. 

Edwards believes it is a human right to have grief counseling and healthcare. He continues to deal with complex trauma, experiencing a heart attack and multiple heart issues in the last few years. The Journal of the American Medical Association noted, “Sibling death in childhood is associated with a seventy-one percent increased all-cause mortality risk among bereaved persons.”

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.”

Good Ole’ Country Music Always Has a Place for Grief

[vc_row][vc_column][vc_column_text]By Terri Schexnayder

 

Country music’s familiar heart-tugging lyrics of country-western ballads about cheating, love lost, and traveling roads in pickup trucks always seems to have a place for grief. Hits are littered with songs about love, death, grief, and faith as artists share their feelings and coping strategies ranging from tears to whiskey.

Steve Seskin is a name you might not know, but he’s written seven number one hit songs and is a two-time Grammy-nominated songwriter for songs that both feature grief, including Tim McGraw’s “Grown Men Don’t Cry,” and Mark Wills’ “Don’t Laugh at Me.” 

The inspiration for “Grown Men Don’t Cry” came from a conversation between Seskin and McGraw about their fathers. Seskin was estranged from his father, who died from a heart attack shortly before they were scheduled to reconnect, and he spoke about the impact his father’s death had on his life.

“I wrote the lines, ‘I just placed a rose on his grave and I talked to the wind’ because that happened to me. I stood by my father’s grave in Queens, New York, and had the ‘mend fences’ talk that we had never had in real life,” he said. 

Seskin and McGraw bonded over the fact that neither had a good relationship with their dads. Seskin said, “It was the rose on the grave line that killed me, and McGraw, who grew up not knowing his dad, understood. Later, Tim and Tug McGraw became close.”

“Our dads weren’t the epitome of what a dad was supposed to be. It can’t be good for you to suppress sadness, grief, and emotions. I don’t want to be that kind of dad. I want to express my emotions. Emotions should be embraced — you need to go through them. When you deny it, you mess with the process.” 

Grammy-nominated songwriter Seth Glier described the power of his favorite country song about loss, “One More Day.” The song was written by Bobby Tomberlin and Steven Dale and made famous by the band Diamond Rio. “I love the second verse, ‘first thing I’d do is pray for time to crawl.’ I especially appreciate how much space there is in the writing for the listener to insert their story into the song. This song could be about anybody yet for most people is about a very specific somebody.”

Glier, who lost his brother Jamie seven years ago, shared “Jamie was born with autism, loved horseback riding, swimming, and pottery and lived his life without the ability to speak in an oral form. He had a language, but it was one all his own and I often credit him with my interest in songwriting. My brother’s death was my first introduction to what I call the territory of grief. The territory is sort of like an ocean. Other people in my life have since passed and brought me back there. After the initial awkward and painful fumbling around that territory, I’ve found a fountain of gratitude and compassion there. I’ve found that I can connect deeply with just about anybody now. I consider that a tremendous gift from Jamie.”

Seskin and Glier co-wrote “When You Lose Someone Like That” for Evermore, and for anyone who has loved and lost someone they dearly love. 

Like “One More Day,” the absence of specific explanations for Evermore’s “like that” refrain intentionally does not name who has died. This technique is used in many country songs. “For example, country music star Kenny Chesney’s 2005 release, ‘Who You’d Be Today,’ written by Aimee Mayo and Bill Luther, doesn’t name a specific person, rather the songwriters used “you” to connect directly with the listener,” noted Seskin.

“We hear the listener saying, ‘like what?’ It was about the suggestion of sadness. It can come out of nowhere. Songs serve many listeners,” said Seskin. 

“In the end, we write to share our songs with many people…we want the listener to complete the piece, bringing their own life to it. They understand the person they lost more than I do. There is value in not defining things or limiting the story.”

Country music’s best will take center stage this weekend in the annual Country Music Television Awards in Austin, Texas. Loss is prominent for two Performance of the Year nominees. Emmy Russell and Lukas Nelson are nominated for their performance of “Lay Me Down,” originally sung by Willie Nelson, Lukas Nelson’s father, and dearly departed Loretta Lynn. The other nominee is the Judds’ performance of “Love Can Build a Bridge.” It’s a touching performance because Wynonna Judd performs with her late mother, Naomi, who died by suicide just one day before being inducted into the Country Hall of Fame last April

During her acceptance speech, Wynonna remarked on the two conflicting emotions conveyed in her title song, “Broken and Blessed.” 

I’m somewhere between hell and hallelujah’ … this is me, broken and blessed.

“I’m gonna make this fast, because my heart’s broken, and I feel so blessed. It’s a very strange dynamic to be this broken and this blessed. … Though my heart’s broken, I will continue to sing, because that’s what we do,” Wyonna said.

Resources:

Steve Seskin

Seth Glier 

When You Lose Someone Like That

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The Child Death Beat: One Reporter’s Decades Covering Child Death and Consumer Product Safety

Photo courtesy of Cynthia H. Craft.

An award-winning USA Today reporter talks about why she’s covered child death for so long

It’s been nearly 23 years, but USA Today reporter Jayne O’Donnell won’t ever forget the moment.

Jayne O’Donnell, health policy reporter, USA Today.

After writing a series of articles in 1996 that prompted the federal government to make airbags safer for children, a group representing the families of the 26 children who had died invited O’Donnell to their first meeting.

They presented O’Donnell with 26 long stem roses, each one representing a dead child. “Nothing has ever been so powerful,” O’Donnell said.

Decades later, O’Donnell has covered all manner of child death causes — from dangerous consumer products to, more recently as the USA Today’s healthcare policy reporter, tween and teen suicide. She co-founded the Urban Health Media Project to give kids a voice.

O’Donnell invited Evermore founder Joyal Mulheron to attend the Association of Health Care Journalists’ annual conference in Baltimore and participate in a workshop session aimed at helping reporters generate health story ideas and provide research sources and techniques to support their work.

In this Q&A, O’Donnell shares more about her work, why she’s felt compelled to report and write about child deaths and why Evermore has an important story to tell.

Q: Tell us how you got started covering the death of children.

In the late 80s, I was asked to write about the auto industry from the Washington, DC, perspective. Because that was regulation, it immediately got into safety and environmental issues. … And child deaths have always really resonated. It just strikes a nerve with people. There’s no tolerance for anything that kills children.

People seem to move on fairly quickly from some of the other deaths of older people, even 20-somethings. But young kids getting killed became a theme of my reporting, partly because it was very unusual at the time for women to be writing about cars at all. In all the years I wrote about cars, I still can’t really write a cohesive explanation of what makes them run. But I never cared to.

I was really writing from a woman’s perspective and more of a mother’s or father’s perspective long before I became a mother. …

When you start interviewing people who have lost children, that stays with you and has always stayed with me — never being able to imagine what it’s like to be those people.

Q: How can we create greater awareness about the public health crisis bereaved parents and families face?

Recognize that reporters have so little time. You guys have to have the numbers, the trends and the victims available to make it really easy for reporters to write. It’s so hard to get the time to do a project on something like this … And keep the stories out there.

Q: What stories have really stuck with you?

After the airbag story, I co-authored a two-part series on teen driving deaths, and that was really the story that made me become even more obsessed with the concept of how do you get over the loss of a child.

[As part of that series], I had lunch with two women who were featured on the front page of USA Today. Their daughters were 17 or so and had been in a car with two young men. The car crashed and both of their daughters died and one of the boys died, but not the driver. I had lunch with them a year after the crash and the one mother cried almost through the entire lunch, a year later. She couldn’t really leave the house. I was like, wow. I couldn’t even imagine.

Then, I found auto safety too narrow and expanded to cover the Consumer Product Safety Commission. I covered kids product safety — window blinds strangling kids, the cords on the baby monitors strangling kids, a lot of different products that were killing kids.

Right before I had my daughter, my only child, in 2000, I did a series on the company called Cosco. They were hiding the complaints about cribs collapsing and hurting kids. That just terrified me too. When my daughter was born, I used to lie in bed, saying, ‘Oh my God, her crib is going to strangle her.”

Q: What interests you about the work of Evermore and Joyal?

I also had a high school friend who carried a baby to term and then her baby died hours after the baby was born. I knew that she had always included a mention of the child on Christmas cards and was still affected by it. That would be now 30 years later.

So, the fact that Joyal was focusing so closely on grief and related issues really appealed to me.

Q: What are the challenges for reporters covering issues like child death?

There’s so much pressure to write about the latest thing. In a downsized newsroom you can’t spend much time writing about the aftermath of one shooting when another shooting has happened. It’s difficult to do the kind of important aftermath stories that are needed.

One of the other challenges is this: If it hasn’t happened to you, you wouldn’t think of it. … Just the fact that there are more than 19 million parents in this country who have lost a child is fascinating to me. In Barbara Bush’s new biography by USA Today reporter Susan Page, they talk about how affected they were their whole lives by the loss of their daughter at an early age. People forget that.

Q: Why was it important for Joyal to be on the panel?

Because infant and child mortality are such important issues, I think that people need to think of new ways to write about them.

Q: How can Evermore get the word out?

Recognize that reporters have so little time. You guys have to have the numbers, the trends and the victims available to make it really easy for reporters to write. It’s so hard to get the time … And keep the stories out there.

Editor’s note: And that’s exactly why we’ve launched this blog and are working hard to spread the word about the devastating effects on parents and families when a child dies.

The numbers and research are stark:

71% of surviving siblings suffer serious health consequences after the death of their brother or sister.

Parents suffer job and income loss, isolation, marriage and relationship strife, poorer health and even shortened lives after their child dies.

Medical professionals agree that parents and siblings experience a “medical event” after the death of their child, brother or sister. Research shows that they actually are biologically and psychologically altered.

There is a disparate impact on black and Hispanic parents. By age 60, black parents are twice as likely to have experienced a child’s death than white parents.

And while all signs point toward a public health crisis, there are so many ways to help these grieving parents and families — from changes to the Family Medical Leave Act so families can take the time they need to grieve to training educators to safely help students express their grief.

At Evermore, we look forward to sharing the data and the personal stories that will help make changes for the families who desperately need it.