Following the death of his teenaged son, Blake, Tom Barklage fought to secure bereavement leave for Johnson & Johnson employees around the world
By Maddie Cohen
After his son Blake died, Tom Barklage took time off to make space for his grief. Little did he know the loss would result in a push to expand his employer’s bereavement care. Today, the high-level manager has made it his mission to change lives for the better.
Grief alters the course of a parent’s life
The death of a child changes a person—and Tom remembers October 30, 2021, like it was yesterday. His son, then 17, was attending an evening gathering with friends when he lost consciousness. A short time later, he died in the hospital of an unknown heart issue: lymphocytic myocarditis.
Tom, his wife Alison, and their daughter Alexis were devastated. Yet Johnson & Johnson (J&J), where Tom has worked for almost 20 years, stepped up to the plate. The company president held a moment of silence in Blake’s honor at an immunology town hall, and Tom’s boss was gracious about his leave. Months later, J&J gave Tom an additional day off on April 7—Blake’s birthday and the day they buried his ashes—and catered a meal for the Barklages and their guests.
Yet Tom struggled. His employer’s official bereavement policy was just five days. And while the pharmaceutical expert could leverage flex days or “take a knee,” those moments his grief became too much, there was little time to process the complexity of his loss.
Not only that, but Tom realized others might not have the same accommodations. Not everyone at J&J had 18 years’ tenure or the flexibility of working in the field.
A push for flexible bereavement care
Tom set out to change J&J’s bereavement policy. He was determined to honor Blake’s legacy and respectfully challenge the status quo.
The process was far from simple—but Tom had to start somewhere. He began by sharing his thoughts with his boss, and then reaching out to J&J’s Vice President of Human Resources. The goal was to bring awareness to the cause. And while Tom’s advocacy sparked discussion, it wasn’t so straightforward. J&J was in the midst of global change, and some stakeholders thought it best to wait a year.
Plus, Tom was still grieving.
Company leaders were skeptical, but the key account manager reassured them. He explained that he was absolutely in his right mind, and that his advocacy was a matter of great importance.
“It helps to have something to fight for,” he explained.
Now, Tom isn’t advocating for a specific number of days off. He is simply promoting a more flexible bereavement policy—for everyone.
Because parents deserve it. And because, in Tom’s words, Blake had a remarkable ability to use the past to make an even brighter tomorrow.
“That’s why it’s so important for me to give back,” Tom says. “I know that if this bereavement policy goes through, the day that I retire from J&J, I can sit there and say, ‘Blake, we did it.’”
On August 1st, Johnson & Johnson released this statement: We all need to step away from work sometimes, and taking time to heal from the loss of a loved one shouldn’t be an additional worry. As part of our newly-expanded global paid leave offerings, every employee around the globe has access to up to 30 days of dedicated paid leave time for bereavement. Learn about all the ways we offer flexibility to enable everyone on our team to succeed at work while also balancing personal and family needs.
J&J Employee Benefits
Honoring Blake Barklage’s legacy
In 2022, the Barklage family started the Blake Barklage Foundation, also known as Blake Gives Back. The nonprofit supports charitable initiatives focused on intellectual disabilities, education, organ donation, and the prevention of cardiac arrest in children and young adults.
Readers can learn more about Blake’s life and legacy by visiting the links below:
Read the heartfelt letter Tom Barklage sent to Johnson & Johnson.
My name is Tom Barklage and I am a J&J employee of 17 years. I’ve valued the culture at J&J as an employee given the priorities its maintained in support of families and patients worldwide for decades. This email is not easy one to write. Last month, on October 30th, my 17-year-old son Blake suddenly passed away from an undetected heart issue. As a parent, this is the hardest thing my wife and I have ever dealt with. I lost my father a year ago and one of my brothers passed away 10 years ago. Losing my dad and brother was tough, but losing my son is gut wrenching. As I write this, I am struggling to see the keyboard through my tears, but I will get through this.
The company policy of 5 condolence days is a policy I am having a difficult time understanding. As you can imagine, when an employee has the unfortunate experience of losing a child, spouse, partner, etc. the ability to
return to work and be productive is almost if not entirely impossible with only 5 days to recover. Grieving the loss of a child is crushing and deeply personal.
I received the recent J&J employee announcement about the new parental leave providing employees paid leave from 8 weeks to 12 weeks. That is great news!! Wonderful policies like this are one of the reasons I love working at J&J! In the Communication it stated that “J&J has a long history of supporting family health because we believe that advancing health for humanity starts at home.” I agree with that 100%!!
The reason paternity leaves are expanding is because someone raised this as an issue to be re-evaluated. Someone had an experience that wasn’t equitable. It started with a conversation and gained momentum from there. That is what I am trying to do. The loss of a child or close loved one is a monumental event that meets or exceeds the emotional/physical needs of a parent/spouse at the time of a birth. I was blessed to be at the birth of my son Blake and daughter Alexis. Losing Blake is so much harder and difficult to deal with. Please do not take this the wrong way. I am not trying to make it about me. My management team whom I work for have been very accommodating!! The support I received from my Janssen family has been phenomenal.
I went back and forth debating if I should send this note to you. I don’t want to come across as being disrespectful or ungrateful towards J&J. J&J has provided my family and I with opportunities that we are blessed to have. I am so happy to be part of the J&J family. But I know my son Blake, he would want me to raise this concern and ask to consider changing the policy to allow for more time for employees to work through their grief process. As I said earlier, it is not just about me. It’s about the other J&J employees too who have suffered loss and are still committed to their jobs and the purpose they find in their work. Our credo states, “We must support the health and well-being of our employees and help them fulfill their family and other personal responsibilities.” I understand that a change like this can’t happen without gaining as much information as possible and ensuring a diverse set of opinions are gained. I would like to be the catalyst for this change and happy to speak to you. Will you and your leadership team consider re-evaluating our company policy on condolence leave? If you would like to meet in person or connect via Zoom, please know that I would welcome that opportunity.
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?”
“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.
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.”
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.
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.”
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.’
The death of a child changes a person—and Tom remembers October 30, 2021, like it was yesterday. His son, then 17, was attending an evening gathering with friends when he lost consciousness. A short time later, he died in the hospital of an unknown heart issue: lymphocytic myocarditis.
“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. 
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.