Enlarge this image

At left, Zion Kelly holds a photo of his late twin brother Zaire Kelly. At right, Zion keeps this framed photo of he and his brother on the desk in his bedroom.

Dee Dwyer for NPR

hide caption

toggle caption

Dee Dwyer for NPR

At left, Zion Kelly holds a photo of his late twin brother Zaire Kelly. At right, Zion keeps this framed photo of he and his brother on the desk in his bedroom.

Dee Dwyer for NPR

Zion Kelly still thinks of himself as a twin. By the time he and his fraternal twin, Zaire, were in their mid-teens, people often mistook Zaire as the older of the two brothers.

“He was taller than me, and his presence was just louder than mine,” says the quiet, contemplative Zion, who is 23 now. “He was very social. He was extroverted. He had a lot of friends.”

Despite their different personalities, Zion and Zaire were inseparable. They shared the same room, went to the same school, had the same group of friends and excelled at the same sports. “We played football,” says Zion. “We ran track and we played basketball.”

And when not doing an activity together, they were always talking. “We talked a lot during the weekdays, the weekends. We were really close.”

But September 20, 2017, was one of the rare days when the brothers had gone their separate ways after school.

Zion went straight home, and Zaire went to the competitive, academic mentoring program both teens attended. Later that night, when Zaire was walking home, a stranger approached him. “He attempted to rob Zaire,” says Zion, “and, in his attempt, shot him.”

When Zion reached the hospital where Zaire was taken, he could already see on the faces of his family that something was terribly wrong. Zaire had been pronounced dead. Zion was heartbroken. “I immediately broke down,” Zion says. The Kelly brothers were 16.

Zion has spent the past seven years trying to find his way through grief and cope with the huge void left behind by Zaire’s death.

A dearth of research

Most people who grieve the death of a sibling, do so well into adulthood. But every year, an estimated 60,000 children in the United States are bereaved by the death of a sibling. (And in the past few years, firearms have become the top cause for children’s death.)

And yet, researchers know very little about the short and long-term impacts of such a loss. “The vast majority of studies that have focused on bereaved youth have tended to focus on the death of a parent,” says psychologist Julie Kaplow, at the Trauma and Grief Center at the Meadows Mental Health Policy Institute, in Houston, Texas.

Kaplow and her colleagues, who work regularly with kids who have lost a sibling, say the death of a sibling is traumatic for the siblings left behind.

And while most such bereaved kids “will go on to lead healthy, happy, functional lives,” says Kaplow, a significant minority are at risk of becoming stuck in their grief.

“They may have trouble functioning in their daily life,” she says. “Their grief can also be accompanied by significant depression, or if the death is under traumatic circumstances, it can be accompanied by post-traumatic stress.”

Finding purpose through grief

In the weeks and months after Zaire’s death, Zion struggled to accept reality. “I was in denial,” he says. “I couldn’t really believe it.”

What helped him cope, he says, was the love and support of his parents, his other siblings, extended family and friends. “I think because I’m a twin, a lot of people reached out to me.”

Eventually, Zion came to accept his brother’s death, and his loved ones helped him see that together they could keep his memory alive. “We just try to keep his name alive, keep his legacy alive by always having his pictures up, always talking about him.”

Enlarge this image

Zion Kelly keeps a screensaver on his phone of he and his brother as young kids.

Dee Dwyer for NPR

hide caption

toggle caption

Dee Dwyer for NPR

Zion Kelly keeps a screensaver on his phone of he and his brother as young kids.

Dee Dwyer for NPR

Even now, the screensaver on his phone is a photo of him and Zaire when they were nearly 6 years old, both wearing yellow team jerseys and grinning at the camera.

Within a few months after Zaire’s death, Zion also started speaking publicly about his loss to raise awareness about gun violence.

“I started to become more vocal,” says Zion, “just telling my story and drawing attention to gun violence in Washington D.C.”

Then, on Feb 14, 2018,, 14 high school students and three adults died in a school shooting in Parkland, Florida. As teenagers across the country organized to protest gun violence in the wake of the Marjorie Stoneman Douglas High School shootings, Zion teamed up with them.

The introverted, soft-spoken teenager addressed the hundreds of thousands of people who gathered in the nation’s capital that spring for the March for Our Lives rally to call for action against gun violence. Later, he traveled around the country and even to Italy to share his personal story of losing his twin brother to gun violence.

Zion Kelly’s high school yearbook documented his efforts to bring attention to gun violence during the March for Our Lives rally.

Dee Dwyer for NPR

hide caption

toggle caption

Dee Dwyer for NPR

“That’s when I felt like he was really living through me, because the whole world, eventually, got to know his name, got to know my story,” says Zion. He also felt that he was making his brother proud through his public speaking and activism. It gave him a passion and a purpose to focus on.

That can be a healthy way of coping, says Kaplow, and it’s something she and her colleagues have seen in many grieving siblings.

“Living the legacy of the sibling who died, or wanting to do things that would make them proud,” says Kaplow. “Or doing something to transform the circumstances [of their sibling’s death] to something meaningful that can help other people not have to suffer in the same way.”

Zion was doing all three of those things with his activism. Kaplow notes it can also be stressful, especially when the surviving sibling feels an unspoken pressure to fill in the void left behind by their sibling. “That can create a lot of distress – a lot of identity distress.”

That identity struggle has been part of Zion’s grief. “I was really struggling to find my identity of being a twin, but not really being a twin anymore,” he says.

All his efforts to be more extroverted like Zaire had left him feeling exhausted. “I just felt drained trying to find myself,” he says, “trying to find who I am, instead of thinking of the two of us.”

“Disenfranchised grief” for a sibling

Many children and teens grieving the death of a sibling don’t have the kind of emotional support Zion did after his brother’s death. Even his older sister, who was in college at the time in Philadelphia felt lonely and struggled to cope with her grief once she returned to campus after Zaire’s funeral, he says.

A family portrait honors the life of the late Zaire Kelly.

Dee Dwyer for NPR

hide caption

toggle caption

Dee Dwyer for NPR

That is a common experience among grieving siblings, says Kaplow. Usually when a child dies, everyone around the family focuses on supporting the parents.

“There is less of a focus on the siblings who are left behind, and we know that their grief can be just as powerful and potent as the caregivers’ grief.”

And so these children end up experiencing what she describes as “disenfranchised grief.”

“Somehow their grief doesn’t feel as important or relevant as the grief of their parents,” says Kaplow. “And [that] is a big problem.”

That was Meghan Britton’s experience after she lost her only brother, Andrew, when he was seven years old. She was 12 at the time.

Meghan Britton holds her childhood journal and her brother’s teddy bear at her home in Fort Wayne, Ind. The journal was given to her by her mother’s friend after the death of her brother.

Kaiti Sullivan for NPR

hide caption

toggle caption

Kaiti Sullivan for NPR

In the weeks and months after Andrew’s death, her parents struggled to cope. “They were just trying to survive the experience,” says Meghan. And “everyone that came to visit, they focused on my parents.”

No one knew what to say to her. If they did, it was with advice to be “strong” for her parents, or to ask her how they were doing.

“It was really lonely,” she says. “And now that I didn’t have any siblings anymore, there wasn’t anyone that I could really talk to about it.”

She struggled to process her loss and struggled to resume her normal life, especially school.

“I had a hard time going back to school because it just felt so jarring,” she says. “Last week my brother passed away, and then this week, I’m supposed to go back to school. That was weird. That was hard.”

Enlarge this image

Meghan and her brother Andrew in Michigan.

The Britton family

hide caption

toggle caption

The Britton family

Meghan and her brother Andrew in Michigan.

The Britton family

What made things harder, she says, is that neither her parents, nor anyone at school talked about Andrew after his death. She remembers thinking, “Did they not think about him anymore?”

What did help her in those early months and years, she says, is a present from her mother’s best friend on the day of Andrew’s funeral.

“She was a really frugal person, and so she wouldn’t spend money unless it was critical,” says Meghan. “And she pulled me out of the funeral home and took me to a Hallmark store.”

At the store, she bought Meghan a journal and a pen. “She said, ‘I want you to write down how you’re feeling, because you need to get this out. You need to capture these things,'” Meghan recalls. “That’s something that still, to this day, has served me well.”

Eventually, Meghan also sought therapy, which helped her understand and accept her own emotions around her brother’s death. And she began other healthy ways to cope with her grief – mainly by bringing up memories of Andrew – the sweet, funny and even annoying moments she shared with him.

For example, his habit of running into her, his head pointed at her belly, aiming to knock her over, and his love of science and Albert Einstein. “He dressed up as [Einstein] one year for Halloween,” Meghan says.

Kids who are grieving need the help and support of their caregivers and other adults to cope, says Kaplow. “What we want to do is provide kids with enough of the coping skills needed to deal with that grief over time,” she says.

Living with grief

Today, Zion lives in Washington, D.C., and works at College Bound, the same competitive academic mentoring program that he and Zaire attended when they were in high school. He shares a two-bedroom apartment with a friend.

But Zaire’s absence still looms large in his life. And so he has filled his room with Zaire’s photos – his way of keeping memories of his brother alive. Their high school yearbook – with photos of himself and Zaire in it – sits on top of a dresser along with the family photos.

Enlarge this image

In his bedroom, Zion Kelly keeps his brother’s memory alive by displaying photos of them in happier times.

Dee Dwyer for NPR

hide caption

toggle caption

Dee Dwyer for NPR

In his bedroom, Zion Kelly keeps his brother’s memory alive by displaying photos of them in happier times.

Dee Dwyer for NPR

He also tries to “be intentional” about how he lives his daily life. “[I] wake up every day and just try to live every day like it’s your last day because you never really know when it’s going to be your last day.”

And when things feel really hard, he can still rely on his family for unconditional love and support. “If I have a lot going on, I can always go back home,” he says. “I feel rejuvenated around my family, spending time with them.”

Meghan, now in her mid-40s, is a mother of two girls – 9 and 12 years old. She’s had three decades of learning to cope with her brother’s absence and has come to accept the loss. Still, she says, she’s been surprised by all the times waves of grief took her by surprise over the years. When her daughters were born, for instance, she was overcome with grief, realizing they would never know their uncle.

Meghan, with her brother Andrew, says that she is still surprised by all the times waves of grief took her by surprise over the years.

The Britton family

hide caption

toggle caption

The Britton family

More recently, when her grandparents were terminally ill and her mother and her four siblings came together to care for their parents and support each other in their grief after they died.

“I was just like, ‘Son of a gun, I’m going to have to do this alone someday, and that is going to suck,'” she says. “Because, that’s not how it was supposed to work.”

The long tail of grief with such losses is normal, says Kaplow.

“As a society, we need to move away from this idea that we want the grief to go away, because it does not go away,” she says. “This is a natural response of the love we have for the person who died, and we don’t want it to go away.”

Kids who are grieving the death of a sibling need help in learning that, she adds. They need help knowing that they may be dealing with reminders of their loss for the rest of their lives.