Lindsey Brewer is a mother — and she refuses to stay silent.
“If I can help one family grieve a little better, that would mean everything to me,” Brewer, a paramedic from Janesville, Wisconsin, said.
Her son Grayson was stillborn at 21 weeks, and a photographer was there to capture the family’s final moments with their son. Brewer says the photos and the online community she found through social media helped her stay strong as she processed her grief.
Brewer is one powerful voice in a growing movement of women who understand that sharing their stories is the first step toward dismantling the stigma around the trauma of pregnancy loss.
Watch the video above and read our full article to learn more about how families are helping each other heal.
Homepage photo by Michael Cullen Photography.
Tag: grief
How Do You Heal After Pregnancy Loss? For These Couples, the Answer Is Publicly
Last December, Lindsey and Ryan Brewer’s son, Grayson, was delivered at 21 weeks. Immediately, the couple had a photographer come to the hospital to take family photos.
One photo shows Lindsey in a hospital gown looking down at Grayson, a small bundle in her arms. Another shows Lindsey holding Grayson’s hand up to the camera; it is so small that it barely covers the tip of her index finger. The scene all seemed fairly standard — as far as family photos go — except that Grayson was stillborn, and this was the way the Brewers were going to remember their son.
The next morning, Lindsey sat down at her computer in her home office in Janesville, Wisconsin, and did something that is increasingly becoming a trend among women who have stillborn children or miscarry: She wrote a Facebook post announcing the death of her son, and then shared pictures from the hospital and her maternity shoot.
About one in four women who become pregnant will miscarry, and one in 160 will experience a stillbirth. Of those women, a growing number are dealing with the devastating pain and grief in new ways, particularly in their use of social media. Sharing their personal stories, it seems, helps these couples deal with their grief and begin the process of healing.
‘YOU’RE GOING TO LOSE YOUR BABY’
The couple was ecstatic when they found out Lindsey was pregnant a few months earlier in August. Lindsey, 25, and Ryan, 29, had been married for less than a year and had just started trying for a family.
At the 12-week checkup, they found out that they were having a boy but also got some troubling news: The baby was measuring small and had two cystic hygromas — buildups of fluid behind the head and neck that can be an early sign of Down syndrome. A test showed their baby had a 95 percent chance of having the chromosomal defect.
The Brewers opted to do another test to confirm the original findings. Either way, they were still excited to be parents. They had picked out an outfit to bring him home in and decided on a name: Grayson John Brewer.
At the 16-week mark, Lindsey went in for an amniocentesis, the test that would confirm if the baby had Down syndrome. But there was worse news.
After an initial scan, the doctor said that she could not perform the test. There was too much fluid buildup.
“It’s inevitable,” Lindsey remembers the doctor saying. “You are going to lose your baby.”
In an instant, the Brewers went from preparing to meet their son to preparing to lay him to rest. Together, they decided that Lindsey would continue with the pregnancy unless her health was compromised.
At 21 weeks, the Brewers went in for an ultrasound and found out that the baby’s heartbeat was gone. That was a Thursday. The next Monday, Dec. 11, Lindsey and Ryan went to the hospital where she was induced. Grayson was born soon after.
They called their friend, a photographer, to come and take photos of the family, and then Lindsey and Ryan took Grayson home to rock him in his nursery before taking him to the funeral home to prepare for burial.
The next day, Lindsey went to Facebook for support. As painful as it was, she was ready to share her loss and grief.
“I wanted the news out there,” Lindsey says. “And I needed people to talk to.”
A SOCIAL TREND
Sharing on social media helps families break through the isolation of miscarriage and stillbirth, according to Denise Cote-Arsenault, a registered nurse and professor at the University of North Carolina at Greensboro School of Nursing. For more than 30 years, Cote-Arsenault has worked with families who have lost babies.
She’s seen more families have pictures taken and displayed not only on social media but also in their homes. She says they also actively speak about their deceased children as part of the family, things that simply did not happen a few decades ago.
“I think it’s a very healthy, therapeutic thing for them to do,” Cote-Arsenault says. “It used to be if you lost your baby you were told not to talk about it.”
Posts about death in general have increased on Facebook since 2014, when it changed its policies around memorializing pages of the deceased. A study conducted last year on social media mourning found that 50 percent of Facebook users surveyed had either posted or interacted with a post about death in the last few years.
The number of online support groups has grown since 2014 as well. Families who have suffered pregnancy loss now have many spaces online to connect, grieve and bring awareness about the prevalence of miscarriages and stillbirths to a wider audience.
Currently, there are more than 100 active Facebook groups and Instagram pages devoted to grieving parents. There are also accounts dedicated to awareness, specifically on Instagram — a recent search shows that the hashtag #pregnancylossawareness has been used nearly 19,000 times on the platform, and #pregnancyloss has been used more than 100,000 times.
Dr. Jessica Zucker, a clinical psychologist in Los Angeles who works with women who’ve experienced pregnancy loss, runs an Instagram account herself, a page called I Had a Miscarriage.
“We’re seeing more people announcing their losses, because why shouldn’t they? If it’s become normal to share sonograms and gender reveals, acknowledging pregnancy loss is just as important,” says Zucker. “If people are sharing about family-building, shouldn’t there be space for people who intended to build their family to share their grief if it goes awry as well?”
Research has shown that using social media can be beneficial to the healing process. A 2016 study by Eastern Illinois University graduate student Resa Ware, a hospice bereavement counselor, found that many people who use Facebook to publicly express grief find it helpful; 46 percent of users surveyed said that Facebook had a positive impact on their individual grief journey.
After Lindsey posted her story on Facebook, several mothers in her community messaged to share their own stories of loss and offer support. She also joined a Facebook group for bereaved mothers.
“People can post and everyone is so supportive and behind them,” says Lindsey, adding that speaking to women who have had similar experiences helps her the most. “It’s amazing.”
NEXT STEPS
At first, after they lost Grayson, the Brewers weren’t sure that they could handle another pregnancy. But friends and family encouraged them to keep trying. “Remember,” a friend told Lindsey, “you are parents even though you don’t have a baby at home.”
The couple have been trying to have another child since February, but are not pregnant yet. As much as Lindsey wants to get pregnant again, she’s also terrified. She’s not sure that she’ll ever enjoy pregnancy again. And as time passes, she’s found that people who have not lost a child sometimes don’t understand that she’s still grieving.
Still, she has continued to share photos from her shoot with Grayson on social media and says that she could not be happier with how the images turned out, or her decision to have them done.
And until the time comes when she’s able to share news of another pregnancy, there’s still Facebook.
Welcome to Life After Death
If you had the chance to not just see your loved ones after they die, but interact with them, would you?
The question for many researchers and neuroscientists working in the aptly coined death-tech field is not one of will we, but rather on what platform.
“Death is often viewed as the great leveller that marks the cessation of experience. But perhaps this needn’t be the case,” writes Muhammad Aurangzeb Ahmad, a data scientist who studies machine learning and artificial intelligence. “Even if the dead can’t interact with us anymore, we can still interact with a simulation of them.”
Not terribly long ago, the concept of bringing people back — or, rather, bringing back their consciousnesses — seemed so far out of reach that it was the subject of an early episode of the futuristic sci-fi series “Black Mirror.” Fast-forward a couple of years to today, and you can find many scientists and philosophers contemplating the ethical implications of re-creating deceased humans, and what that might mean for how we grieve.
Dmitri Itzkov is a Russian multimillionaire who told the BBC in 2016 that he left the business world to “devote himself to something more useful to humanity.” His vision: A world where science has decoded the mysteries of the human mind, which then can be uploaded to a computer and transferred into a robotic avatar.
The thirtysomething Itzkov, who founded the 2045 Initiative to pursue his goal of “cybernetic immortality,” already knows how he will spend his immortal life. “For the next few centuries I envision having multiple bodies, one somewhere in space, another hologram-like, my consciousness just moving from one to another.”
It sounds outlandish, like something out of a low-budget sci-fi movie from the ’80s. But not everyone in the death-tech field is planning an endless existence involving mind-uploading and lifelike robots.
The Philadelphia-based biotech company BioQuark is currently studying how to reanimate the brains of people on life support who have been declared brain-dead. (Once the brain stem stops functioning, a person is considered to be legally deceased.) The plan is to inject stem cells and amino acids into patients’ spinal cords and brain stems, alongside other therapies, and grow neurons in the brain that will connect to each other and thus, regenerate the brain.
“This represents the first trial of its kind and another step towards the eventual reversal of death in our lifetime,” said BioQuark CEO Ira Pastor at the study’s outset.
There are other technologies cropping up that don’t bring back the dead, per se, but do allow mourners to keep their memories of loved ones alive for eternity.
A few years back city officials in Anchorage, Alaska, for example, began allowing people to stick QR codes on the city’s columbarium wall, which holds 9,000 urns. When scanned by visitors, the QR codes pull up an online memorial, photos and videos posted by the family.
“If we give people the opportunity to memorialize in a way that they’re comfortable with, then they’ll be down the road to healthy grieving, and that’s the whole point,” said Rob Jones, director of Anchorage Memorial Park Cemetery.
It’s not out of the realm of possibility that robotics and the rapid evolution of technology may one day revolutionize the way humans die — or don’t die.
Until that time comes, however, the rest of us will have to make peace with our own mortality and continue honoring our dead the analog way: by keeping their memories alive inside our brains, and our hearts.
Inside Camp Erin: A Haven for Kids Who Have Suffered the Worst Kind of Loss
It has been almost two years exactly since 10-year-old Isaac Vogt and his 4-year-old sister, Katie, learned the meaning of the word “devastating.” On May 7, 2012, after a five-year battle with melanoma, their beloved mother, Lois, succumbed to the disease at the age of 42, leaving their father, Peter, as the sole parent of two young children who were blindly grappling with their grief.
Isaac, now 12, can be reserved and quiet. He doesn’t speak easily about his feelings, but what little he reveals is meaningful. Details about his mother, and his love for her, remain sharp in his mind. “I remember one time when my mom was in hospice, we both sat on her tiny medical bed playing Life on her old computer,” Isaac says, lingering over the memory. “She used to tell me all these stories about when she was a teacher, which I really liked.”
At any age, grieving the death of a parent is an exercise in isolation. For children like Isaac and Katie, now 6, it is an especially lonely experience, since it’s unlikely that they would know other kids who have gone through such loss. And yet, many children are dealing with the death of a loved one: According to a 2010 survey, one in seven American children will lose a parent or sibling before the age of 20, and the impact of their grief may be profound and long-lasting.
It’s for Isaac, Katie and the millions of other grieving children across the country that Camp Erin was created in 2002 by the Moyer Foundation, a nonprofit founded in 2000 by former Major League Baseball player Jamie Moyer and his wife, Karen. Camp Erin — a weekend-long, sleepover retreat — is the largest network of free children’s bereavement camps in the country, with 43 locations and counting. To date, Camp Erin has hosted more than 12,600 kids. It was in a wooded Minnesota setting last summer that Isaac was able to honor the memories of his mother, learn to process and talk about his grief, and participate in traditional, fun camp activities, all the while connecting with other kids who have had similar experiences.
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In short, at Camp Erin, Isaac’s healing truly began. “Losing a loved one is never easy, no matter what age you are,” says Karen Moyer, vice president of the Moyer Foundation. “Studies show if you don’t deal with grief, you have a higher risk of depression, relationship issues and alcohol and drug abuse. Whenever there’s any type of distress in your life, it’s really important to acknowledge it and not run away from it. Face it, own it and try to live on in your memories.”
Camp Erin — which was recently the subject of the HBO documentary “One Last Hug: Three Days at a Grief Camp” — was born of such a memory. In 1998, when Jamie was pitching for the Seattle Mariners, he and Karen were invited to meet 15-year-old Erin Metcalf and her family through the Make-a-Wish Foundation. Erin was battling liver cancer and, being an avid baseball fan, she had requested to meet a few players. “There was an immediate connection,” Karen says of their first meeting. “I stayed in touch with the family through Erin’s suffering and her eventual passing [in 2000 at the age of 17]. I was so touched by her, her faith and her embracing death. She had sisters and was very concerned about them and how they would grieve. For me, on a personal level, that was really amazing. ”
In 2002, the Moyers established Camp Erin in Everett, Wash., hosted by the hospice that the Metcalfs used. From there, the camp expanded throughout the Northwest, before going national. In 2007, the Moyers donated $1 million to fund the program’s expansion, with the goal of having a Camp Erin in every city with a Major League Baseball team. “I think it became a legacy, after Jamie’s long and successful career, that he could leave something behind in the cities that he played in,” Karen Moyer says.
Each of the Camp Erin locations partners with a local grief-counseling organization, which runs the camp and provides support services. While each camp follows the specific model laid out by the Moyer Foundation, it’s up to the partner organizations to make the camps their own. They train the volunteers and do the necessary community outreach to let people know about Camp Erin and increase attendance. In turn, the Moyer Foundation makes a 10-year, $100,000 financial commitment to each partner organization to allow it to continue hosting Camp Erin at least once a year. Some locations have already reached the 10-year mark, and Karen Moyer says that so far, the partner organizations have been able to keep their Camp Erin programs afloat on their own, through fundraising and volunteer efforts. “The communities are really taking it on and sustaining it much longer than we would be able to,” she says. “We’re planting the roots and they’re helping it grow.”
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For the past five years, Minnesota’s Camp Erin has been hosted by a Twin Cities-based organization called Youth Grief Services (YGS). It is the only program in the state that offers bereavement counseling for the whole family, centered on grieving children. Jenny Simmonds, lead program coordinator for YGS, says that she has had parents drive their kids 30 miles or more to attend its seven-week grief-counseling series. With the introduction of Camp Erin, YGS has reached kids from all over Minnesota and from other states as well. “We know kids heal through play, and camp is a ripe environment for that,” Simmonds says. “The kids go canoeing and swimming and all those fun camp things, just knowing that they’re doing that with kids who understand what it’s like. That’s very healing.”
A typical Camp Erin program starts before the weekend actually begins. In Minnesota, Simmonds says they host a “save your spot” pizza party for the campers and parents about two weeks before camp. This event gives campers the chance to meet their cabin mates and counselors, while also giving parents some peace of mind that their kids will be taken care of while they’re away. “Kids are coming here not knowing [anyone] except for a sibling in some cases,” Simmonds says. “There’s a lot of nervousness in the beginning. Also, sometimes it’s the first time they’ve been separated from their parents since the loss.”
For Peter Vogt, the introductory session made a big difference. Not only did he feel comforted knowing that Isaac would see some familiar faces by the time he got to the camp, but he was also grateful that the counselors told parents what to expect after the campers came home. “Isaac, he’s an introvert like his old man. He’s not prone to talking about stuff immediately after it happens,” Vogt says. “They told us that it might be a few days until they start to talk about things [that happened at camp], and I found that helpful.”
Once the kids get to camp, they say a quick goodbye to their parents or guardians before starting the opening ceremony. Here, the kids post a picture of their lost loved ones on a memory board and introduce themselves to other campers. It’s emotional and daunting all at once. “It was kind of strange in the beginning, the first night we’re there, talking about what happened in front of the whole camp,” Isaac says of the opening ceremony. “I didn’t exactly enjoy that.”
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But the discomfort of talking about their loved ones wears off as the days go on. They hold sharing circles, where the kids attempt to express their feelings of grief through words or pictures. They also participate in fun camp activities like climbing walls, canoeing, swimming and fishing. And on Saturday night, they take part in a luminary ceremony, during which each camper releases into the water a lit lantern that he or she has decorated and says goodbye to the person they lost. “That can be pretty heavy, and we don’t want the kids to be too emotionally raw, so afterward we have a big luau party with lots of games,” Simmonds says. “The kids are really bonded by then.”
The next morning, the kids break up into their sharing circles and get ready for the closing ceremony, when they perform skits and songs that they prepared with their groups over the weekend. After just two short days, parents say they start noticing a marked change in their kids. “You can tell as a parent if your child has bonded with kids or not,” Vogt says. “Isaac had definitely bonded with some of the kids he was with and some of the adult leaders, too. So much of Camp Erin boils down to feeling like you’re not the only one. And that’s the biggest benefit from it.” Vogt was so happy with the camp that Isaac is going back this summer, along with Katie, who is now old enough, as well as the two children of Vogt’s fiancée, who lost her husband six months after Lois Vogt passed away.
That’s the fundamental mission that drives Camp Erin — to be the place that helps bereaved children realize they’re not alone. “I’m always touched by the campers who come on that Friday night, basically as strangers, and how they can comfort each other in their moments of sadness in the memory board scene, and just hug each other,” Karen Moyer says. “They laugh and cry. It’s safe. And for some kids, who haven’t cried yet and they finally do so at camp, that’s the real beginning of their process of healing.
“Miracles happen at the camp in the sense that things you think are impossible become possible,” she says. “It can be lifesaving, quite honestly. Kids learn how to live on in this world.”
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