Jun 25, 2020 | Social, Stories
It has been over five years since we lost you.
When we found out we were having twins, we were so excited, overwhelmed and scared. From one of the very first ultrasounds, I was concerned that you were measuring smaller. The doctors tried to reassure me appointment after appointment and I tried to believe them and became easier as the first trimester came and went. We were in the “safe” zone of the second trimester, what could go wrong? We had a sneak peak ultrasound and found out we were having two girls! We joked about all of the tea parties and tutus in your dad’s future.
At the anatomy scan, we saw two healthy girls. You were still smaller, but I knew you were a fighter. This time you were the one who kicking your sister, Harper. Your dad and I laughed. And that was the last time I saw you. Thank you for that memory.
Three weeks later, our world came crashing down.
I immediately knew something was wrong as soon as the ultrasonographer started taking your measurements. I couldn’t bare to watch any longer and turned to your dad with tears rolling down my face. He was confused until he heard the words no parent should even have to hear, “There is no heart beat”.
We went home, in shock, and just cried. I felt sick. I don’t understand what happened or why it happened. I don’t think I ate or showered for days. I didn’t want to be pregnant anymore, feeling your sister kick and move was a constant reminder of what we lost. The next 17 weeks were a struggle. Grieving for you and trying to stay strong for Harper felt impossible to balance. I hated carrying your lifeless body but then I came to realize as long as I stayed pregnant, I had you with me. On your birthday, your sister stole the spot light and was whisked away to the NICU, so your father and I didn’t have proper goodbye like we had hoped. I wish that entire day went differently. We should have welcomed both of you into the world.
As time goes on, Harper asks more questions about you. She knows she has a very special guardian angel keeping her safe. She tells Aubrey, your younger sister, all about you.
When I look at Harper and Aubrey, I can’t help but think what you would have looked like and how you should be here playing and giggling along with the two of them.
Some days are easier and some are harder, but not a day goes by that we don’t think of you and miss you.
Our time was cut entirely too short but I am so grateful for every day I had with you and blessed that you chose me to be your mom. You helped me to become a mother and not take those little moments for granted. You were and will always be so loved. We miss you tremendously, Brynn.
Love,
Mommy
Apr 27, 2020 | Community, Grief
The creators behind a new documentary set to air on public media channels across the country in May want to start a national conversation about a topic that many shy away from — grief.
The goals for “Speaking Grief” are twofold: to validate the experience of grief through the stories of those mourning the death of family members and also to make it easier for the rest of us to support the grieving.
So many times, says Lindsey Whissel Fenton, the senior producer at WPSU who is producing, directing, and writing the documentary portion of the multiplatform Speaking Grief initiative, friends, neighbors and coworkers want to support those who are grieving a death, but don’t know what to say or do or how to help.
“People are left without tools and, unfortunately, that often leads to them disappearing because they fear saying the wrong thing or because they feel ill-prepared,” she says. “We felt the biggest value we could add was to help educate people who find themselves in a support role. We wanted to address those feelings of discomfort by giving them a basic understanding of grief as well as suggestions for how to go about offering support, so they can show up for their people even when they feel uncomfortable.”
Universal interest
Although Fenton has experienced death-related loss, there was no single, life-defining personal experience that spurred Fenton to make “Speaking Grief,” though, she said, many people assume she must have a profound grief story that sparked her interest in the topic. A now-retired colleague, Patty Satalia, originally came up with the idea years ago, and it took a while to gain traction.
But people’s assumption that a personal loss story is the only reason Fenton would focus her creative efforts on a topic so many would prefer not to broach is telling, Fenton says. “What is interesting is that people come at this with the assumption that somebody would only care about grief if they are directly affected by it.”
In reality, she said, we all will struggle with grief at different points in our lives — and we all will grapple with how to help a close friend or family member who is mourning a death.
“Eventually, it will affect all of us,” she says. “And even if you haven’t personally experienced it yet, it’s something we all have a stake in and need to get better at.”
Different places, varied experiences
The hour-long documentary, produced by WPSU Penn State and distributed by American Public Television (APT), highlights a collection of people from across the country who are grieving a family member’s death. “We wanted to show people who are at different places in the grief journey in terms of when the death occurred,” Fenton says.
Some have just experienced a death in the past year or two. For others, it’s been longer. Either way, Fenton wanted to demonstrate that grief is an ongoing experience — not some one-and-done process with a finite timeline.
At the same time, the documentary highlights different kinds of losses as well — a son who died in a car accident, a boy and his grandmother who died in a fire, a stillborn baby, a husband and father who died from brain cancer — to illustrate how those experiences can shape the grief experience.
Throughout the documentary, Fenton uses commentary from grief professionals to provide some clarity to the themes featured in each of those personal stories — such as explaining how children grieve in unexpected ways and why secondary losses, like when friends or family vanish because they don’t know how to provide support, occur.
“When you realize what people go through in addition to the actual death event, it’s shocking and sometimes difficult to hear,” Fenton says. “On top of losing someone you love, you experience all of this other loss. You experience the loss of friends, the loss of financial security. All of these things that you might not realize if you haven’t gone through this type of experience yourself.”
Bringing all together
“Speaking Grief” is a multi-platform project that also includes social media campaigns via Facebook and Instagram and a website that will feature a growing number of personal stories, videos and resources. The film’s trailer was released in January.
Just the launch of the trailer has already generated positive feedback from people from around the world, says Cassie Marsh-Caldwell, project manager. “The amount of people who just simply took the time to email and tell us a little bit about their own personal story and say thank you” was surprising, she says. So were the groups who reached out — grief organizations, along with nursing colleges, educators and funeral directors, among others.
Plans originally included in-person premiere events in April though those plans have changed because of the need for social distancing during the coronavirus pandemic. Public media stations across the country also are scheduling broadcast dates for “Speaking Grief” starting in May and continuing throughout the year.
Fenton is hopeful the documentary and web content will bring together both those who are grieving and those who are seeking to support them, providing a safe space for each group to learn from the other.
“It can be a very emotional space, but we want to create the kind of dialogue where people can ask questions and not be afraid to make a blunder in the interest of learning, so maybe the next time they are confronted with grief, they can feel a little bit more prepared,” she says. “We need everybody to engage in this and think about the role they can play in helping all of us get better at grief.”
Mar 18, 2020 | Advocacy, Appropriations
For the first time in history, key federal health agencies will report what activities, if any, they are doing to advance bereavement care. Photo by Bob Bowie on Unsplash
As Congress shut its doors and fears of COVID-19 swept the nation, a small group of families and professionals worked tirelessly to advance our nation’s bereavement care system. We know that lack of high-quality, consistent bereavement care is an invisible public health crisis. It touches nearly every doorstep in America. In the wake of overdose deaths, suicides, and mass casualty events and now COVID-19, our nation’s response must consist of more than thoughts and prayers.
Bereaved families face declines in health and wellbeing, instability and solvency. Bereaved spouses, parents and siblings are all at risk of premature death as a result of their loss. Ten percent become disabled because of it; when a death is violent that number doubles, particularly after the death of a child. Two million children have lost a parent and only 45 percent access Social Security Income. Suicide among children ages 10–24 are up 76 percent since 2007.
The problem is more stark for minority families. Twenty-nine percent of black families report the death of a child, while 20 percent of Hispanic families and 17 percent of white families report the death of a child respectively. According to the Institute of Medicine, the death of a child is one of the most profound and enduring stresses a person can experience. Further, by age 20 black families are twice as likely to lose a child when compared to their white counterparts. By age 70 that number is nearly 3.5 times higher and by 80, it is more than quadrupled.
Bereavement and its implications on families are not part of our nation’s public health dialogue, or children and families or racial equity.
We can do better.
Bereavement care in America is broken. There are limited tools, few qualified professionals and even fewer protective policies. For nearly ten years, Congress has failed to protect to bereaved parents from being fired.
Late Wednesday, Rep. Lloyd Doggett’s (D-TX-35) office said he would lead the effort to direct key federal health agencies to report activities, if any, they are conducting to advance bereavement care. His commitment grew from listening to a mother whose 19-year old son, Ellis, was killed by a drunk driver. Our small team now had 48-hours to deliver five Congressional members to support the amendment — a tall order for a team with no lobbying firm, no established relationships and a global pandemic in our midst.
Fast and furiously we sent emails to Republican and Democratic members overnight. As offices opened, a mother who lost her 24-year old son, Alex, to addiction called Rep. Lisa Blunt Rochester (D-DE). When the receptionist said, “how can I help you today?” She replied, “I want to talk about my dead son.” She was patched to the chief of staff. We had our first signatory. Less than 32 hours left.
And so, it began. The CEO of Good Grief, a New Jersey nonprofit bereavement center serving 900 children and families monthly, recruited our second, Rep. Andy Kim (D-NJ-3). 28 hours left. Shortly thereafter, with the engagement of the president for the Association for Death Education and Counseling, Rep. Nita Lowey (D-NY-17), chairwoman of the House Appropriations Committee, supported the inclusion of the language. As did Rep. Rosa DeLauro (D-CT-3), chairwoman of the subcommittee on health appropriations, and other appropriators.
Then, the leader of a coalition supporting parents who have lost a child at any age, brought Rep. Jan Schakowsky (D-IL-9) on board. Minutes later, a mother contacted Rep. Peter Welch (VT-D) and talked about life after her 25-year son, Kevin, was killed by a train. Four down, one to go. 27 hours remaining. Four hours later, Rep. Deb Haaland (D-NM-1) joined, followed by Rep. Kathleen Rice (D-NY-4), Rep. Josh Gottheimer (D-NJ-5) and Rep. Danny Davis (D-IL-7). Eight signatures with eight hours remaining.
We had done it; at least in the House. For the first time in history, key federal health agencies will report what activities, if any, they are taking to stem declines in health and wellbeing among bereaved families, as well as what tools and resources are available to professionals.
On to the Senate. It remains to be seen who will lead the charge or if this issue will make any priority list. As of Friday, the Centers for Disease Control and Prevention estimate 200,000 to 1.7 million Americans could die from COVID-19, compounding an already stressed health system.
We believe that every member of Congress — and the Administration — should support every American’s access to quality, tailored bereavement care. Whether it’s the urban mother who loses her son to homicide or the rural family who loses their aging father to suicide. Where professionals have the tools, resources and research to respond, support and continue serving our nation’s bereaved families. It is not a partisan issue; this is an American issue.
Bereavement touches all of our doorsteps, regardless of geography, race, religion or wealth. As a modern society, families no longer have to slog through their losses alone. Imagine a tomorrow where individuals, families and communities have the resources, policies and programs in place to facilitate healthy coping, to get us back to work, to contribute back to society.
We are dedicated to making the world a more livable place for bereaved families. We hope you will join us because someday this will likely be your story too.
Mar 16, 2020 | Appropriations, FMLA
For too long, too many have considered bereavement as simply a mental health issue. When a family member or loved one dies, those grieving experience a deep sadness as their lives are changed fundamentally forever. Conventional wisdom tells us a bereaved individual or family will eventually “get over it,” “find closure” and “move on.” But, those commonly held myths are far from the truth.
Research continues to show that a loved one’s death isn’t something that we just “come to terms” with. Researchers tell us that bereavement grief makes us more prone to cognitive decline, disease and premature death. It can lead to financial loss. And it can tear families apart.
What’s more, federal policies and programs can compound the experience, further victimizing mourning Americans who need more than our thoughts, prayers and casseroles.
For example, of the two million bereaved children in the United States, Social Security Income is not reaching all children leaving those in need with lower levels of economic wellbeing and educational attainment. Or, for example, two fathers Barry Kluger and Kelly Farley have advocated for nearly a decade to protect newly bereaved parents from being fired from their jobs. Imagine losing your child, then your job.
Over the last three weeks, Evermore has been calling Congressional offices, meeting with staff and sending materials to dozens of staffers. And here’s the good news: Capitol Hill is listening, and lawmakers are beginning to understand that bereavement isn’t just a mental health issue, but an issue — and an American issue — that demands serious attention. The question is: will they act?
As deaths from suicide, overdoses and mass casualty events increase, members see how bereavement and the lack of a public health response is impacting their own communities. These discussions come as lawmakers consider appropriations bills and updates to the Family and Medical Leave Act, which currently does not provide time off for workers after a child’s death.
Here’s where Evermore is making big strides in bereavement care.
Appropriations committees address bereavement
In appropriations committees in both the House and Senate, spending bill proposals recommend that the U.S. Department of Health and Human Services seek information from its agencies about their bereavement care activities. Those agencies include the National Institutes of Health, the Centers for Disease Control and Prevention and the Substance Abuse and Mental Health Services Administration, for example.
According to the proposal, the agencies would be tasked with examining their own activities to advance bereavement care for families, including risk factors for survivors and whether policies and programs in place help or hinder coping and processing. Agencies would also be charged with documenting what resources they are providing to the professional community as well.
If approved, it would be the first time the agencies have studied how they address the bereaved and could pave the way for future spending bills that fund new efforts to support those who are grieving.
FMLA expansion could come
Congress hasn’t built upon the Family and Medical Leave Act since it was passed in 1993, and that’s led to many workers not having the right to take unpaid leave or unable to afford unpaid leave when it is available. For many grieving parents, in particular, the law doesn’t carve out an opportunity for them to take time off without fear of losing their job.
But that may be about to change. In February, the House Education and Labor Subcommittee on Workforce Protections held a hearing to talk about FMLA expansion, including bereavement care. In her opening remarks, Rep. Alma Adams, a Democrat from North Carolina, talked about the number of cases where the act does not cover workers who need to take leave, specifically calling out “family members taking time to grieve a child’s death.”
Research continues to show that the death of a child is one of the most severe and prolonged trauma that anyone can experience, which is why it is critical for Congress to recognize child death as an eligible event for FMLA job protection.
Evermore is having an impact here too. We submitted a statement for the record on the importance of including a child death as an eligible event for FMLA.
Our request is three-pronged.
- We want the U.S. Department of Labor to conduct a survey on bereavement leave for all employers with more than 50 employees.
- We’d like the FMLA to be expanded to include a child’s death as an eligible event, so parents have time to mourn.
- And we’re asking Congress to increase the age of a child to 26 in the law to make it parallel with the Affordable Care Act and tax law.
“As a modern society, we should no longer have to slog through death alone with few resources,” Mulheron said. “We can reimagine a tomorrow where people have the support they need in their own communities — whether urban or frontier America — and where professionals have robust supports, resources and benefits to move this work forward.”
Added Mulheron: “There’s still plenty of work to do, but this is a shared human experience, and people know that. We’re thrilled that offices are listening.”
