Tim and Donna Culliver had nothing to worry about.

That’s what the doctor told the Brenham, Texas, couple when Donna brought in their 4-year-old son, Adam, after he developed a fever and began complaining of nausea. Reassured that he had just caught a typical stomach bug, they returned home, where Adam continued running around with his usual infectious, energetic smile on his face.

Two days later, Adam woke up from an afternoon nap screaming that his eyes hurt.

“It was a different cry,” Donna recalled in a recent phone interview. “Like an excruciating cry, like, ‘Help me.’”

She noticed his gums were white and swollen and called Tim, who rushed home to help take him to the emergency room.

Around 5 p.m., they arrived at the hospital. Staff assured the parents that Adam was just dehydrated from his stomach bug. They gave him an IV and drew some blood.

Around 7 p.m., the results came back. Adam’s white blood cell count was 525,000, more than 52 times higher than normal.

It wasn’t a stomach bug.

It was childhood leukemia.

The doctors assured the Cullivers that Texas Children’s Hospital in Houston could provide treatment and called an ambulance to take them.

‘It Was All Very Cold’

Around 9 p.m., they arrived at Texas Children’s. Adam had been sedated on the ambulance ride so he wouldn’t pull out any needles. Within minutes, his oxygen level plummeted, and doctors intubated him. His head began to swell, but as doctors discussed splitting his head to relieve the pressure, the neurologist told the Cullivers the words that forever rip apart a parent’s world.

“He’s brain-dead.”

“It was all very cold, fast, quick,” Donna said. “You were just in this state of, ‘I’m in a horrible nightmare. I’m going to wake up. Somebody, slap me. I’m not hearing this.’”

Nothing Could Bring Him Back

Adam remained on life support four days until, on Jan. 20, 2003, the Cullivers accepted the heart-crushing, life-shattering truth that nothing could bring him back. At 11:01 a.m., they held their joyful, kind, exuberant son one last time as his final breath left his lungs.

Fast-forward 18 years, and the Cullivers are still surrounded by hospitals and sick children. But this time, it’s as the vice president and secretary of an organization they founded to support families battling childhood cancer. The nonprofit, Adam’s Angels Ministry, bears the name of their own angel who now lives on through their work.

The Cullivers are only two of the millions of people who have been plunged into the title of bereaved parents thorough a sickness, accident or other event that leaves them struggling with the sudden dark chasm where their child used to be. But as they journey through the relentless, mind-numbing grief, many parents, like the Cullivers, take their personal tragedies as a catalyst to help others, honor their child and find a light.

Parents Love Their Deceased Children

To many people, grief brings to mind the stages first outlined by psychiatrist Dr. Elisabeth Kübler-Ross in “On Death and Dying”: denial, anger, bargaining, depression and acceptance.

However, many use these stages to oversimplify the grieving process, said Erin Spalding, a licensed clinical social worker-supervisor and program director of the Austin-based grief support organization the Christi Center.

“Grief is not linear,” she explained. “It’s a roller coaster that’s up, down and all around. It’s also something that doesn’t come to a conclusion. It gets to where you are able to incorporate that person in your life moving forward, but it doesn’t mean you never have the pain anymore of losing that person.”

Though the death of any close friend or family member is a life-changing, grief-filled experience, losing one’s child, especially at a fairly young age, adds unique facets to a parent’s grief.

“It’s out of the order of the way things are supposed to work,” Spalding explained. “You’re supposed to go before your children.”

A parent’s role as nurturer can also contribute a sense of guilt, Spalding added.

“There’s this piece of, ‘How could I not protect my child?’ regardless of what happened,” she said.

Suddenness is a Factor

In recent years, an average of 67,729 children and young adults under the age of 25 have passed away each year, according to an analysis of CDC data. The leading cause of death for this age group was accidents or unintentional injuries. The suddenness of such deaths adds an increased sense of shock to the grief, said Dr. Gloria Horsley, a grief expert, psychotherapist and bereaved parent who founded the loss and recovery site Open to Hope.

“One thing that people don’t realize, it is such a body slam,” Horsley said, recalling the initial days after losing her 17-year-old son, Scott. “It’s like hitting a brick wall going 90 miles an hour when you have that sudden death.”

Loss of the Future

Losing a child also cuts short all the plans and expectations a parent had for their child’s life as they realize they’ll never see their child graduate, have a successful career, get married or have children of their own, Spalding said.

“You don’t get to see who they would become,” she explained. “Rather than losing the person that they were, you also are grieving all the things you were expecting to experience with that child.”

Such a loss forever changes a parent’s life. Many describe it as losing part of themselves, having a child-shaped hole ripped into their hearts, or their heart shattering beyond repair. Others can find no words to truly express the enormity of their grief.

Often, the first year without a child is dominated by shock and a focus on survival, Horsley said. It’s not until year two that parents begin to truly realize how different their life will be. And as they continue to journey along the road of grief, many realize they don’t want to simply stumble along. They need to do something more.

Healing Through Helping

For some parents, this search for something more leads them in one direction: finding meaning.

Meaning is an essential step in one’s healing, helping people make sense of the grief and find a way forward after a loved one’s death, according to grief expert David Kessler in his book “Finding Meaning: The Sixth Stage of Grief.”

Although people can find meaning in numerous ways, Spalding said she has seen numerous bereaved parents accomplish this by helping others.

“Finding meaning and meaning-making in your loss can be one of the most beneficial things to your healing,” she said. “One of the final things we would expect to see in someone who is healing from grief is that they are giving back.”

Helping others is also a way for parents to transform themselves from victims to a force for kindness or change, said Horsley.

“You want to be empowered, you want to feel like you count,” she explained.

Helping Others

Some parents help others through actions like volunteering, giving to a charity in their child’s name or supporting other bereaved parents.

These are all ways Liz Boenig is honoring her son, Miles Wilson.

In 2004, Boenig lost her only child when Miles passed away from a prescription drug overdose at the age of 21. She said she tried to stay busy and take things one day at a time in the following months and years, and she gave to the Nature Conservancy in Miles’s name to honor his love of animals and the outdoors.

But five years in, Boenig said she wasn’t happy with the way she was still feeling.

She found the answer in the Bereaved Parents of the USA, a national organization that provides support groups for families grieving the loss of a child. At the group’s annual conference, she discovered the healing power of sharing about Miles’s life and death and hearing other bereaved parents’ stories.

Inspired by this impact, she began reaching out whenever she heard about someone who lost a loved one.

“That was my way of honoring Miles and remembering him,” she said in a recent video call, speaking from her home in College Station, Texas. “I found out people really appreciate having the chance to talk about their loved one, what happened, how they miss them.”

Serving in Memory of a Child

In 2018, after continued involvement with BPUSA, she was invited to volunteer on the board of directors. She agreed and now serves as the organization’s president, in Miles’s memory.

“[Miles was] always very generous and kind to his friends,” Boenig said. “By taking on some of his characteristics and things he liked, it makes me feel good. It makes me feel like he’s still living through me.”

Like Boenig, Michelle Jeter was also motivated to help other grieving parents after her 16-year-old daughter, Sydney, died in a car crash on July 10, 2013.

“[Sydney] was larger than life,” the College Station, Texas, mom said in a recent video conversation. “She had a big, huge heart. … She really reached a lot of people, and it was a huge emptiness when she was gone.”

With no bereaved parent support group in the area, Jeter said she turned to Facebook to express her emotions and found other parents wanting to share their own grief. At the urging of others, she established the Brazos Valley chapter of the Compassionate Friends, an international organization providing peer support for bereaved parents, grandparents and siblings.

‘I Felt So Alone’

“I didn’t want anybody to be where I was when I joined this journey, because there was nothing for me and nobody to talk to, and I felt so alone,” Jeter said.

In addition to facilitating the chapter, Jeter said she remembers her daughter by working to spread Sydney’s love and kindness to others. She published a book of Sydney’s church notes and faith-related writings. She passes out turquoise business cards that proclaim “I think you’re beautiful” in Sydney’s handwriting.

Although Jeter said bereaved parents are not always ready to help others right away, everyone can find a way to memorialize their child.

“It gives them a productive way to share their love for their child,” she explained. “Knowing that I was doing something good with this horrible thing that happened to me helped me.”

In Their Names

Other parents channel their grief into organizations to leave an impact in honor of their children. Many build these organizations around the way their child died and focus on bringing change.

When Candace Lightner’s 13-year-old daughter Cari was killed by a repeat offender drunk driver in Fair Oaks, California, in 1980, Lightner said she was determined for something good to come out of the experience. Four days later, she founded Mothers Against Drunk Driving after learning the driver would likely see no jail time.

“I was able to channel all of that rage—and you have no concept of the rage, believe me, that I was feeling—into doing something not only about him but about others as well,” Lightner recalled in a recent video conversation. “It was also channeling it into something incredibly positive that was helping so many other people.”

Saving Others’ Lives

Since then, MADD has spread throughout the nation and abroad, helping change drunk driving laws and saving more than 380,000 lives, according to their website.

“It had a profound impact,” said Lightner, who now serves as the CEO of a new driver safety organization she founded in 2014, We Save Lives. “The biggest change, of course, is that drunk driving was no longer socially acceptable, which it was when Cari was killed.”

A desire to make a difference also motivated Adam’s Angels Ministry, Tim and Donna Culliver’s organization supporting families facing childhood cancer.

During Adam’s brief illness, the couple said their community showered them with food. After he died, they knew what they needed to do.

“We went back into the hospital and brought everything we had [been given] at that time,” Donna said. “People told us we were crazy.”

Donations Helped Parents Love their Deceased Children

Every time the couple received money for funeral expenses or other support, they donated it to families at Texas Children’s. A year after Adam’s death, their pastor suggested they turn these actions into an official ministry, and Adam’s Angels was born.

“That became a healing process for us,” Donna explained. “It was part of our way of grieving.”

Today, Adam’s Angels has provided financial, emotional and spiritual support to hundreds of families whose children are receiving cancer treatment in Austin and Houston hospitals, the Cullivers said. The organization has also urged a greater acknowledgment of childhood cancer and advocated for policy supporting new pediatric cancer drugs.

The Cullivers said the ministry has become their calling and a way to continue Adam’s desire to help anyone he met.

“By Adam losing his life to cancer, there’s so many things that have changed,” Tim said. “You say one person can’t make a difference? Yes, you can.”

Devastation Beyond Words

For other parents, their child’s legacy, rather than change related to their death, inspires their organization’s focus, as it did for Dr. Ken Druck.

An international expert on healing after loss, Druck described the death of his 21-year-old daughter Jenna in a 1996 bus crash during a study abroad trip in India as a devastation beyond words.

“Every bereaved parent probably feels the same way I feel, that [their child was] one in a trillion and idealizes, if not just glorifies, and celebrates their child’s life,” he said. “But Jenna was truly that person.”

Jenna was a natural leader with a passion for supporting other women, Druck said. The same year she passed away, he launched a foundation in her name to honor her life. For almost two decades, the Jenna Druck Center provided thousands of bereaved individuals with support. It also graduated 18,000 girls from a girls’ leadership program that Jenna had established when she was 15.

Organizations named after a child, like Adam’s Angels and the Jenna Druck Foundation, also honor their namesakes by declaring to others that they lived, said Horsley, the grief expert who founded Open to Hope. Horsley dedicated Open to Hope to the memory of her son, Scott, who died in a car accident in 1983.

“The only reason we do what we do is because Scott died. Or I should say, because he lived,” Horsley said. “It matters how [your child] lived and who they were, and you want to remember that and cherish those memories.”

The Day Everything Changed

With a phone call, my family’s world, too, was upended in an instant.

In the final minutes of June 2, 2019, my then-22-year-old sister, Hannah, called my parents. She had received a Facebook Messenger call from someone with the music festival my 24-year-old sister, Sarah, was working at near Ozark, Arkansas.

Hannah told my dad to contact the number she had received for a chaplain with the Arkansas Game and Fish Commission.

“There’s been a helicopter accident,” the chaplain told my dad when he called.

My dad’s mind began to race with plans for him and my mom to visit Sarah at whatever hospital she was in. The chaplain disintegrated these thoughts with his next words.

“Sarah didn’t make it.”

The Rest of the Story

My dad quickly got the rest of the story: A helicopter had been providing sight-seeing rides of the area. The pilot took off with Sarah and two other passengers, but the helicopter never returned. Rescue crews finally arrived at the crash. Only one male passenger survived.

My mom said she first thought it was a scam or a horrible joke. Who would reach out about something like that through Facebook? Even after a quick internet search confirmed that a helicopter had crashed, she didn’t want to believe it. Were they sure the survivor wasn’t female?

My dad, too, said it seemed unreal. But each time he repeated the story as they called family members, the truth took hold a little tighter.

All those descriptions of grief as empty or heavy or painful are true. There were days I’ve felt numb and void of emotions. It’s as if she were a stranger and not my energetic, bold, resilient sister. There were days the grief felt like an actual weight in my chest.

All Losses Are Different

But as difficult as losing Sarah has been for me, I can only imagine how it’s been for my parents. I may have lost a sister, but they lost one of their girls.

It’s been especially important for my mom to find ways to memorialize Sarah, many of which have involved other people.

Early on, she connected with some of Sarah’s friends and has provided a motherly ear if they needed to talk. She also reached out to the survivor of the crash and continues to stay in touch with him. It’s as if her love for Sarah has only grown and overflowed to everyone involved in Sarah’s life.

More recently, my mom asked my sisters and me to help her create cards inviting others to “Shine like Sarah.” We plan to give them out accompanied by acts of kindness dedicated to Sarah’s memory.

My mom has also talked about one day creating a scholarship for interns at music event businesses. She knows how much Sarah would have appreciated even a small scholarship when she was an intern.

Like other bereaved families, we want to do these things in Sarah’s name to show she lived. To show she was loved. To find hope that good can still be written into her story. And to share that hope with others.

Never Forgotten

Once a child dies, there’s no going back to life before the loss, bereaved parents agreed. But though it may feel impossible in the early days of grief, finding hope and healing is possible, Horsley said.

“The day you hear they’re dead, it’s a new life for you,” she added. “You can look at it as the end of life, or you can look at it as being a new life, a different life. It’s fascinating to see what people have gone on to do and how much courage and strength they have.”

In this healing process, every bereaved parent has a choice to make, Druck said.

“Your heart is broken, but it either breaks open, and you become the more compassionate, loving, honest version of yourself. Or your heart breaks closed, and you contract around the pain,” he explained. “Let self-compassion lead the way, and let your heart break open in as many ways as you can.”

The grief will never disappear, but it does soften with time, the Cullivers attested.

“It used to be you couldn’t pick up a picture [of Adam] at all without crying,” Donna recalled.

“But now you can look at it and see it and you’re happy,” Tim finished.

But as the grief weakens, the memories, connection and love for that child never will.

“They’re part of your life,” Horsley said. “And they always will be.”

 

Open to Hope: Inspirational Stories for Handling the Holidays After Loss: Dr. Gloria Horsley, Dr. Heidi Horsley: 9780983639916: Amazon.com: Books

Hear more from Gloria Horsley: Grief In The Workplace final with Dr. Heidi and Dr. Gloria Horsley – Open To Hope Radio

 

Dr. Gloria and Dr. Heidi Horsley

Dr. Gloria Horsley and Dr. Heidi Horsley are a mother/daughter team and internationally recognized grief experts. They are the founders of The Open to Hope Foundation and the hosts of The Open to Hope Show. In addition, Dr. Gloria is a board member for The Compassionate Friends and Dr. Heidi is an adjunct professor at Columbia University and has a private practice in manhattan. Their message is that others have made it through the grief journey and so can you, if you do not yet have hope lean on theirs.

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