Open for comment until 11:59 p.m. Eastern Time on Friday June 2, 2023
One of the most hotly debated topics in bereavement care is whether all grief is normative or a diagnosable condition. For the first time, the federal government is beginning to examine scientific evidence on when grief is normative and when, if ever, does it limit daily life and function.
As part of the FY23 U.S. budget process, Congress passed a $1 million appropriation directing the Agency for Healthcare Research and Quality, a federal health agency, to conduct an evidence-based review of grief and bereavement literature to determine the feasibility of developing consensus-based standards for high-quality bereavement and grief care. AHRQ is accepting comments from the public on this issue until 11:59 p.m. Eastern Time, Friday, June 2, 2023. To learn more, visit AHRQ’s website and follow the directions on how to submit a comment.
Further, a technical panel of experts will be convened to help guide and inform federal efforts. Evermore has the distinct opportunity to nominate experts for the technical panel. If you are interested in being nominated, submit a nomination here (the nomination period has now closed). Nominations will be accepted until 12:00 p.m. Eastern Time, Friday, May 19, 2023. Submitting a nomination application does not ensure that Evermore will advance your application to federal leaders. In addition, if accepted, Evermore will not cover expenses related to your service as part of this effort.
As concurrent mortality epidemics touch every neighborhood in America, now, more than ever, our nation must invest in grief and bereavement leaders, programs, and science. This effort will advance our nation toward Evermore’s vision of a world where all bereaved people experience a healthy, prosperous, and equitable future. We are more committed than ever to serving bereaved children and families and the tireless frontline providers who have been on the frontier for decades.
Forgotten by most of society, Maryam Henderson experienced two devastating events that ultimately changed her course: a 25-year prison sentence and the death of her son, Augustine.
Maryam was serving her sentence at St. Gabriel’s Louisiana Correctional Institute for Women when she received the news that her oldest son had died in a motorcycle accident. There were no social or mental support systems available for Maryam. In addition to the absence of professional assistance, she could not even take refuge in the support of her prison community. A gesture as simple as a hug from another inmate could result in a minimum 90-day stay in solitary confinement, known as “The Hole.”
Recently, there has been mounting attention surrounding policies and practices for incarcerated women – and for good reason. According to the US Department of Justice, since 1980 there has been a 716 percent increase in female incarceration. In Louisiana, black women are incarcerated four times more than white women. According to the Bureau of Justice Statistics, more than half of America’s prison population has a child under 18. The racial inequities surrounding child loss are staggering. Black Americans are two and a half times more likely to lose a child by age 20 and three times more likely by the time they reach 50-70 years of age.
“I am continuing to live with it: the death of my son and re-entry into society,” Maryam shares. Knowing firsthand the unequal support former female inmates receive, Maryam has channeled her energy and love into supporting formerly incarcerated women through her upstart venture SisterHearts Boutique & Thrift Store. “SisterHearts” is an affectionate term identifying women formerly incarcerated, those still in prison, and others who have supported Maryam since her release.
SisterHearts Boutique &Thrift Store is no small affair. The 15,000 square-foot facility is located in St. Bernard Parish, one of the areas hardest hit by Hurricane Katrina and an integral part of the community. Beyond offering goods ranging from common household items to clothes to furniture, SisterHearts focuses on “decarceration” training by creating a safe space for transition back into society. “Decarceration” focuses on rebuilding identity and empowerment by reversing negative behaviors.
She also has made transitional housing a focus of her efforts. Maryam knows from her experience in the criminal justice system that inmates are required to provide a residential address as a condition for release. For a variety of reasons, many women lose their homes while serving their sentences. To address this challenge, Maryam offers a free six-bed facility for those women who have no home to return to or a safe place to stay upon reentering society.
While she clearly focuses on serving formerly incarcerated women, Maryam also works with former male inmates, who support the store. Michael Coleman has been with SisterHearts since the beginning and has developed customer service, merchandise repair, and management skills.
While Maryam provides practical and emotional support for those much of society has forgotten, she faces common struggles as a small business owner and bereaved parent. “I live with Augustine’s absence daily. Just like a mother’s love, this pain can never be erased. I honor his memory by loving others and working hard every day to strengthen my heart.”
Kevin, a fierce protector of his nine siblings and Nancy and Ray’s son.
A Bereaved Mother’s Day
Dr. Mom, otherwise known as Nancy, is an unflappable mother of ten and leads her large family with grace, instilling a deep love for life in all her children. As a psychotherapist who specializes in addiction and trauma, she has a soft spot for people and falls in love easily, especially with children. Kevin was no different.
Kevin and Nancy.
Kevin joined the twelve-member brood at the age of fourteen. “We got a call from a foster care agency saying he had nowhere to spend Christmas, asking if we could we take him for a couple of weeks,” says Nancy. “So, we did. And we fell in love with him.”
While it took some time to bond, Kevin soon curled comfortably into his new life, even joking that the family must have lost him at birth, and it simply took 14 years for them to find him. “He was able to overcome the experiences of his past and learn to love and trust. It was a beautiful thing to witness,” she says.
By 16, he would bristle whenever he was asked if Nancy was his “real” mom. He told her, “I decided that ‘real’ means you Raise me, you Enjoy my company, you Answer all my tough questions and you Love me — that’s REAL.”
He became a fierce protector of his nine siblings as well as an overall optimist and frequent smiler.
Kevin was the kind of young man who brought his mother flowers for no particular reason. And from the time that he began his first job as a teenager, he would request every Sunday off because “that’s our Family Day day.” With a large family, celebrations are frequent, and four years ago, the day before Mother’s Day, was no different.
The family was celebrating Ricky’s 11th birthday, Kevin’s younger brother, with several friends when 25-year-old Kevin headed to work. Just as they lit the candles on Ricky’s cake, officers arrived with the news that literally knocked Nancy off her feet. Kevin had taken a shortcut to work, jamming to music with earbuds while walking along a Vermont railroad track. He was killed instantaneously by a train.
The Mother’s Day card he had purchased lay on his bed, unsigned.
Anniversaries
The weeks leading up to the fourth anniversary of Kevin’s death have been particularly difficult. “For some reason, the three-year anniversary was easier for me than this one, and there is no rhyme or reason for it… I’ve come to accept that I can’t predict the best or worst days,” Nancy said.
She always prepares for Mother’s Day, birthdays, and anniversaries. She and her husband, Ray, Kevin’s stepfather, take the day off work. “But there are some days I can’t prepare for,” Nancy confides. “There is no explanation as to why certain days just take your breath away and knock your feet out from under you.”
Nancy takes a lesson from another tragic loss in her life. Just before Nancy’s 10th birthday, her older foster sister, Elaine, was murdered. Pictures of Elaine around the house just disappeared.
“We never talked about her — she was completely gone. My parents said they were advised not to take us to the grave or talk about her,” Nancy said. “That was a big mistake. It made it very hard to cope with the grief. My husband and I have made a conscious effort to go the other way — Kevin is not a forbidden topic.”
Nancy talks about Kevin in a vibrant, vivid way and encourages the rest of her children to do the same. He loved to sing constantly, “but was awful,” laughs Nancy, noting that he often put his family in stitches with his off-key stylings. He had a big sense of humor, a habit of blurting out movie spoilers, and disturbingly stinky feet. He had a strong Christian faith and regularly assisted with the sound equipment at church.
Making memories
Each of her children chose a support buddy to be with them through the wakes and funeral. “I think that was the therapist in me,” says Nancy. Friends and family members were tasked with keeping a special eye on the children, whether they needed a drink of water or a person to lean on. “It helped us to know that just for a little while, we could just focus on Kevin and our own grief,” says Nancy.
At Kevin’s wake, Nancy and Ray invited people to sculpt their memories of Kevin out of clay and make two copies — one to stay with Kevin in his coffin, the other to keep. Memorabilia included shakes with straws and two impressions of the sheriff’s badge demonstrating who Kevin was and all the people he touched.
Balls of blue yarn, Kevin’s favorite color, were situated throughout his packed service. Attendees tossed the yarn creating such a giant web that firefighters teased it might be a fire code violation. But it “showed how Kevin connected us all in his short life. We put a piece of blue string in each program as a reminder that Kevin built connections between people and that lives on.”
Struggling to parent surviving siblings
The hardest period Nancy remembers was a few weeks after Kevin died. “The sympathy cards stop coming and people aren’t bringing meals anymore,” she said. “You’re expected to function, and you don’t even know how.”
Nancy couldn’t even go to the grocery store — “people would come over and say, ‘are you okay?’ And you’re thinking, ‘just let me grocery shop, I’m barely hanging on.’ I started grocery shopping several towns away for a while not to have people approach me.”
She also began to feel fear for her other children, that was sometimes overwhelming.
“For a while, I was so scared that they would die that I set up a system with them,” Nancy said. “We picked out the panic face emoji. If I sent it out to them it just meant ‘I need to know you’re alive’ and they would send back kisses and hugs.”
Nancy and Kiki talk about Kevin and railroad safety.
The profound loss challenged her beliefs as a parent. Her catchphrase for all of her children had long been, “I gave you life to live!” She had encouraged them to move fully into their lives and travel. Kevin had done mission work in Mexico. “After Kevin died, I just felt like I changed my mind — I gave you life to be in a bubble, to stay safe and protected from everything. But they would bring my words back against me… It’s hard. What if living life means you’re taking risks that mean you could die?”
Finding purpose
Nancy had gone back to get her Master’s Degree in Psychotherapy and finished her program just weeks before Kevin died. Around that time, she began to feel uncertain that she should go on and pursue her Ph.D.
“It was one of those times when the roles reversed. All of a sudden, Kevin was lecturing me, “Mom, it’s been your lifelong dream to get your doctorate. ‘Don’t give up, don’t stop.’ And he ended that speech with, ‘Besides, I’ve been waiting to call you Dr. Mom.'”
She postponed her Ph.D. program for nine months but realized how heartbroken Kevin would be if she didn’t finish. “So, I started it — and I have felt him with me all along the way,” Nancy said.
While rearranging her bedroom to create a space to study for her spring exams, Nancy found the last birthday card Kevin gave to her. “When I opened it, it said, ‘I can’t wait to call you Dr. Mom.’ It was strange to find that right as I started the exams.” Nancy has stayed open to, and taken comfort in, any sign that connects her to Kevin.
“I’m a logical, scientific person, but I need those signs,” she says. “Sometimes I wonder if it’s just our intense need to feel him with us that makes us read more into something than is really there. If this is the case, I don’t want to know because I choose to keep feeling those connections with him.”
Then her exams fell on the anniversary of his death. At first, it was really painful, but then I realized it was kind of his way of saying, ‘I’m there, I’m with you.’ When I do finish (in 2020), I’m going to change my license plate to Dr. Mom.”
Blessings of love and a life to live
The day after Kevin died, Nancy’s best friend called and told her to look outside. There was a double rainbow. “I like to believe it was Kevin’s Mother’s Day gift to me.” The first time Nancy shared her sister’s murder publicly was in 2012, then “on the way home, a double rainbow appeared,” she says. “Kevin and I talked about that as Aunt Elaine sending her blessing of love.”
As Nancy’s two youngest children, Kiki and Ricky, headed out to do mission work with homeless individuals in Boston, she said “part of me is like, ‘don’t go out on the streets of Boston — that’s dangerous!’ And another part of me feels like ‘live every day fully because you don’t know how many you might have.’ This is the biggest balancing act.”
For now, however, Dr. Mom will continue to look for double rainbows and tell her children ‘I gave you life to live.’
Forgotten by most of society, Maryam Henderson experienced two devastating events that ultimately changed her course: a 25-year prison sentence and the death of her son, Augustine.
Nancy takes a lesson from another tragic loss in her life. Just before Nancy’s 10th birthday, her older foster sister, Elaine, was murdered. Pictures of Elaine around the house just disappeared.