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    What Happens When A Parent's Grief Goes Viral?

    It's not unusual to find personal meaning in a stranger's tragedy. But would you buy a t-shirt or get a tattoo memorializing a child you've never met? Meet the well-meaning, sometimes-obsessive followers who have, and the parents living through their deceased child's online afterlife.

    Last year, the night before Mother’s Day, Shannon Blount made a request. Devastated by the death of 3-year-old Ryan a little over a week before, she asked her husband if he could set up an appointment with a tattoo artist. Now she wears Ryan on the inside of her arm; the red-haired boy stands smiling and holding a red balloon.

    A few weeks after getting the tattoo, she was sitting in a Monterey, California, park with her kids when a woman approached and mentioned Ryan. “At first I wasn’t sure what she was talking about,” Blount explained. “But then she tapped her inner arm and I looked down and, of course, there was Ryan on my arm.” Blount isn’t his mother, his aunt, or even a friend of his parents. She’s one of several strangers who have gotten memorial tattoos after his story went viral on Instagram in May 2014.

    Ryan and his parents, Jacqui and Dan Saldana, lived in South Pasadena, California. They made regular trips to Disneyland, where Jacqui and Dan got engaged and Ryan spent the last morning of his life. That afternoon, while visiting a relative’s house with his parents, Ryan was hit by a pickup truck and pronounced dead at the scene. The family witnessed the collision.

    In 2011, Jacqui started a blog called Baby Boy Bakery, where she shared recipes, crafts, and intimate dispatches from her life as a mother. The day after Ryan’s death, Jacqui’s friend and fellow blogger Alissa Circle shared a plea on her own site:

    Today as I sat with Jacqui she gave me the honor of sharing her story. ...
    They need us to rally
    They need us to pray
    to share
    to love
    to remember…

    Will you grab a picture from Jacqui’s Instagram feed, and post it to yours? Will you share words of encouragement and tag #RedBalloonsforRyan?

    Other mommy bloggers followed suit, and Ryan’s story spread from small-time sites to ones with hundreds of thousands of daily readers. Strangers began sharing Ryan’s picture along with the hashtag, inserting him into their Instagram streams of home-cooked meals, school recitals, soccer games, and sunsets. Within a week, actors Sophia Bush and Tori Spelling had shared Ryan’s story, Instagram followers were releasing commemorative red balloons as far away as South Africa, and an auction benefiting Jacqui and her husband, Dan, had raised $67,555. Ellen DeGeneres brought Jacqui onstage during an episode of her talk show.

    Instead of going silent after Ryan’s death, Jacqui began writing candidly about her grief on her Instagram account and blog. Her following has exploded. For women who haven’t lost a child, Jacqui’s posts offer a window into their worst nightmare, when something as simple a Band-Aid stuck on the sidewalk serves as a message from a deceased child. “Sleep is not the same,” she wrote in another post, a selfie taken with a backdrop of striped sheets. “We stay up late to avoid it. often it's filled with replayed images of the day our life fell apart. sometimes there is nothing replaying, my mind just goes dark. I long for the nights I can go to sleep with ease & maybe dream happy about my son.” Her supporters paint portraits of Ryan, share their DIY-Ryan inspired decor, and dress their kids in clothing emblazoned with Ryan’s image. Today, Jacqui has over 285,000 Instagram followers, and #redballoonsforryan has been used over 32,000 times.

    Jacqui’s followers are part of an online community of women — mostly white, mostly moms — who’ve become invested in Jacqui’s life and, in the process, connected with one another. Many of these women run their own mommy blogs or “closet pages” — Instagram accounts where women sell their own children’s gently worn clothing to make pocket cash. Their connections help them support grieving moms in a process that sits at the intersection of social media based mourning, the rise of web-based crowdfunding, and the propensity of parents to document their child’s every moment online. While people have long used online outlets to grieve loved ones and public figures, the intense, intimate mourning rituals for kids like Ryan are something else entirely. And while these rituals create a much-needed space for mourning in a culture that treats grief like it’s contagious, not everyone wants their child subjected to such celebrity. But once begun, it’s hard to stop.

    “Even though it’s been a year since Ryan died, his death and Jacqui’s life are still relevant to me,” Blount, the woman with the Ryan tattoo, said. “I can’t imagine that’ll change.” She checks Jacqui’s Instagram account weekly. “When Jacqui announced that she was expecting again, I celebrated that news as if it was one of my very best friends,” she said. “It's one-sided, sure, but following Jacqui is kind of like having a best friend you don't get to talk to much.”

    Jacqui’s fame is exceptional, but not entirely unique. I came across a similar mom a few years ago, in that familiar 3 a.m. haze, scrolling through Instagram, hesitating every so often over a particularly compelling image. I noticed that one account I followed, run by a mom who usually shares pictures of her own chubby-thighed toddler, posted a photo of someone else’s little girl. In the photo caption was the hashtag #penniesforpenny, and the news of 22-month old Penny Thomas’s sudden death.

    By the time I’d found Penny’s photographer mom Jill Thomas’s account, I felt like I knew their family. Like Jacqui, her posts were consumed with her grieving process and memories of her lost child. I scrolled down until I hit the transition point in Jill’s feed, when photos of Penny’s gravesite and empty crib were replaced by snapshots of Penny with bedhead, Penny playing outside, Penny alive.

    Seasons ticked by and I checked in regularly: I watched as the family relocated from California, where Penny had drowned in a pool, to Utah, where she was buried. They decorated the grave for every holiday; they got a dog and chickens; Jill got pregnant, had a son (“I had so much fear since he has been born that I would lose him too,” she captioned one post) and then later, another daughter. Her older children seemed happy in Utah: they named their home Penny Ranch and each animal for a word the nearly 2-year-old Penny had spoken before her death.

    I wasn’t the only one following their story. “We don’t come from money, and funerals are so expensive,” Jill, a wedding photographer, told me over the phone earlier this year. “Coming home and dealing with the loss of Penny, it was like, And how are we going to pay for everything, too? It was completely overwhelming.”

    Jill confided in a social media savvy friend, who quickly got to work. She set up a PayPal account for the Thomas family and posted the link, along with the hashtag #penniesforpenny, on Facebook and Instagram. They thought it would gain traction among family and friends; unexpectedly, wedding photographers who knew Jill shared the link on their popular blogs and social media accounts. That’s how thousands of strangers around the world found out about Penny; donations reached $31,000 in a matter of days, and envelopes full of pennies came in from states across the U.S. Two-thirds of the money went to funeral expenses and a tombstone. Jill used the final third to reimburse couples whose upcoming weddings she felt incapable of shooting.

    “It saved us,” Jill said, now three years on. “I don’t know how we would have covered the funeral expenses without all these strangers’ help.”

    But it wasn't just about the money. Reeling from the shock of Penny’s sudden death, Jill found support in the condolences of strangers who learned about her daughter’s life online. “In the days after Penny died, nights and mornings were the hardest,” she said. “At night I couldn’t keep my mind from thinking all these horrible things, and when I woke up I’d have to start a day all over again. So I’d scroll through Instagram, reading everybody’s posts and comments. To say it was comforting is really an understatement.”

    To commemorate what would have been Penny's 3rd birthday, Jill launched a new campaign, this time to give back to others going through similar struggles. With the help of family, friends, and some strangers she’d recruited from Instagram, Jill made rings out of hollowed pennies. They raised $8,500. The next year, when people asked if they’d sell them again, Jill solicited work from artists and small businesses because they couldn’t keep up with the demand for rings. That auction raised $11,000.

    As Jill moves forward in a life without Penny, the online community has remained, keeping her daughter’s memory alive. “The exposure that’s happened has been very healing for me. I’m grateful that people know her,” she said. “As time passes, it’s not always easy to talk about Penny. You feel like you’re expected to move on, others certainly do, so it always means a lot to me when people reach out to say they’re remembering her.” Plus, she added, it’s just easier to open up online. “I’ll be having a really hard day, grieving intensely, really close to tears, and my mom will come over and I won’t say anything. Later, I’ll post something on Instagram about how much I’m struggling and how much I’m missing Penny and my mom will call and say, ‘Why didn’t you tell me?’ And it’s not like I didn’t want to tell her; sometimes it’s just hard to get it out when you’re face-to-face.”

    Last spring, Rachel Fandale, a Detroit-based stay-at-home mom who runs a small T-shirt business on the side, sat her son down in front of the TV so she could work on a fundraiser for Asianae, a little girl who died after being struck by a car. Mirroring #penniesforpenny and #redballoonsforryan, Fandale and her online friends coined the hashtag #bowsforasianae and began posting pictures of Asianae on Instagram, calling for prayers, donations, and help in spreading the word after first hearing about the story on the news.

    It wasn’t until a week or so later that Asianae’s father, Anton Thomas, became aware that people were sharing photos of his daughter on Instagram, after a friend discovered them while absentmindedly scrolling. (The families of Asianae Thomas and Penny Thomas are not related.) Anton, a San Bernadino–based sales rep, began to scroll through the 400 posts, populated by people collecting monetary donations and lamenting aggressive drivers under photos or custom-made graphics of his daughter. “Honestly,” Anton said, “I thought it was a scam. There she was, our baby, all over the place, and we had no idea who was doing it.”

    While Anton’s suspicions grew, Fandale’s fellow organizer Nicole Jackson had been trying to track the Thomas family down. She explained that they planned to give all donations to the Thomas family directly. To raise more, she floated the idea of doing an auction. Anton hesitantly agreed. He found it bizarre that strangers felt so attached to his daughter, but Jackson seemed like “real good people.” Plus, the Thomas family didn’t have money to cover Asianae’s funeral expenses, let alone the hospital bills from the week she was in a coma before she died.

    The photos of Asianae that spread on Instagram are blurry. The Thomas family doesn’t have an iPhone, a chic parenting blog, or the funds to dress their kids in pricey clothes. The crocheted ball jar cozies, glittery monogrammed wall decor, infant’s bow ties, and a toddler-sized shirt that reads “petite bohéme” in scripted letters auctioned off on Asianae’s behalf would never find a place in their home.

    Asianae’s fundrasier didn’t spread nearly as far as Ryan’s, even though they died within weeks of each other and their stories were picked up by people in the same community. “I saw that Asianae’s story wasn’t getting as much traction as Ryan’s and it was really upsetting,” Jackson told me. “I felt like it had to do with Asianae’s race.”

    “To see the difference in how many people were willing to donate hundreds of dollars or hours of their time for Ryan but wouldn't repost a request for prayers for Asianae’s family was stunning,” she said. She also noticed a lot of judgment directed at Asianae’s family. “Asianae’s mom would post a photo of her drinking a beer and Ryan's mom would post one of her drinking wine. One is acceptable and one wasn’t,” she said, “It was infuriating and totally unfair.”

    Anton and his wife, Erika Hannah, have struggled with that scrutiny. They’re grateful for the $4,000 strangers gave them, but with the money have come malicious comments and the proliferation of Asianae’s image all over the Internet. “People write things like ‘You should have been watching her more carefully’ or ‘Two-year-olds move fast, why wasn't someone with her?’” Erika said. “That really hurts.”

    After settling their two older kids in another room of their small San Bernardino apartment, Anton ushered me to a leather couch and sat down nearby. He said he likes to talk about Asia (which what she was called by her family), but Erika was clearly guarded. She stood by their dining table, busying her hands with tasks. After a few minutes, she came closer, leaning against Anton’s armrest. “Losing Asia was the worst thing in the world,” he explained, “but then we just lost all control of her photos, too. It felt like salt in the wound.” Erika nodded vigorously.

    When I asked her about the hashtag, she said they had nothing to do with it. In the last photo she posted of Asia, the little girl smiles up at the camera, wearing a striped T-shirt and a bow headband that inspired the hashtag used to commemorate her after her death. “On our way to the party,” Erika captioned the photo. That’s the photo strangers now use to commemorate the girl they’ve never met.

    “We wish the photos weren’t out there; we want her just here with us,” Erika said, gesturing to the walls around their living room, covered with framed pictures of Asia and her two older siblings. They keep her cremains on the mantle. “We couldn’t leave her in the ground somewhere — we had to take her home where she belongs,” Anton added. Beneath the mantle sits a gigantic plastic iguana. Asia’s siblings brought it home from school one day, hoping to scare her. Instead, she was delighted, and used it to freak out anyone who visited.

    Anton and Erika find it comforting to keep Asia’s clothes hanging undisturbed in her closet and her toys all over the apartment, but her virtual presence disturbs them: “I’ll be having a good day and then I’ll get on Facebook and some stranger has tagged me in a picture of Asia and I just break down crying,” Anton told me.

    When Fandale and I talked on the phone months after the fundraiser, she hadn’t heard how the Thomas family felt — she’s never spoken to them directly. “Yeah, I might have a hard time if photos of my son were all over the place and on T-shirts and stuff,” she said. “The thing is, you need the photo to get people to connect.”

    Though she’s been incredibly open and public with her grief, when I reached out to Jacqui for an interview, she declined. She said that though her family’s story could be found with a quick Google search, "it still is a very private matter and isn't to be plastered everywhere other than my own personal channels.” It seemed surprising that someone who makes the intimate details of her life so public would refuse to do an interview and even threaten legal action, but as I began interviewing her supporters, it became clear how many others had staked a role in her story, claiming a bit of her son for themselves.

    Often, their knowledge of Jacqui and Ryan rivaled my own, which had come from months of research. They could rattle off his favorites (food: pancakes, place: Disneyland, Ninja Turtle: Raphael) and would casually mention the particulars of a video posted by one of Jacqui’s friends on Instagram two years ago. Almost always, they breathlessly asked me if I’d spoken to Jacqui and were disappointed when I said no, not really. They’d been trying to get in touch too — they wanted to send her something, or ask her questions, or just thank her in person for her bravery.

    Hours after seeing Jacqui on Ellen, custom doll maker Michele Severino hopped out of bed in the middle of the night and headed to her Middletown, New York, studio. “I was like, ‘I just have to sculpt him,’” Severino said. She spent the next two days crafting Ryan’s head out of polymer clay, using a photo she found on Jacqui’s Instagram to sculpt an exact replica of the deceased boy. She wanted to finish the doll and give it to Jacqui, but since that would’ve taken another 40 hours of work, she sought confirmation from Jacqui that she was interested. When Severino couldn’t reach Jacqui via email, she began posting the photo to Instagram and tagging Jacqui.

    If Jacqui approves, Severino plans to make custom clothes and red high-tops like Ryan wore. When we spoke over the phone, I asked her what she’s doing with the doll head while she waits to hear back. “Oh, he’s just sitting here in my studio,” Severino said, adding, “Hi, little guy” in the kind of voice used for small children and animals. “The fact that Jacqui has chosen to continue to live her life and share her experience with other people is so inspiring to me. I wanted to give something back to her.”

    So did Mindie DeMoss-Adamos, a psychic medium in Virginia Beach who planned a photo shoot with her own son at the Philadelphia "Love" statue. They wore matching T-shirts featuring a red balloon to commemorate Ryan. Like hundreds of others who’ve posted photos of their kids holding balloons or wearing memorial gear, DeMoss-Adamos sees it as a way to spread a message of love and also support Jacqui in her grief.

    “I knew that if my shirts came in before we left for Philly, I would want the Love Park to be where we captured a portrait since Ryan’s legacy is one of love,” DeMoss-Adamos told me. “Of course, our shirts arrived the day before we left.” She said she found out about Ryan via Instagram, and when she realized her son Ace was born on the exact day Ryan died, her sense of connection grew stronger. She plans to tell Ace about Ryan when he’s old enough to understand.

    DeMoss-Adamos ordered the shirt from IndieNook, a husband-and-wife owned clothing company that sells T-shirts with family-friendly slogans like “Taco 'Bout Cute” and “Right Meow." Co-owner Andy Mulvihill explained that Ryan had “repped” IndieNook before his death, meaning that the company would send the Saldanas free children's clothes in exchange for Jacqui posting photos of Ryan wearing them. “When I saw on Instagram that Ryan died," Mulvihill said, "I immediately thought of this balloon T-shirt design that we’d never actually used and I was like, We’ve got to print it, that shirt was made for Ryan."

    The shirt was a success — a year later, it's still their second most popular item. “People really feel moved by Ryan’s story; they want to share in it and be a part of it,” Mulvihill explained. After the first few months of T-shirt orders, IndieNook says they gave the family two checks totaling $28,000. However, the brand now keeps all the profits. "We just didn’t think they’d want to feel like they’re getting all this charity,” she told me, sounding a bit uncomfortable. The shirts continue to sell.

    Among these women, there are a few obsessives and opportunists; but for the most part the community is populated by those mourning their own losses, who have finally found a space in which they can talk about death openly. A sort of grief by proxy happens, wherein sharing in Jacqui's or Jill's or Erika's grief gives people the chance to act out their own losses, long after their bereavement leave has ended and the grace period for wallowing seems to have run out. It's an opportunity for catharsis in a society obsessed with moving forward.

    On the posts of grieving moms like Jacqui and Jill, it’s not uncommon for one commenter to disclose that she recently lost a child to SIDS and another one to respond immediately with condolences and her story of a stillbirth. Shannon Blount, who got the tattoo of Ryan, had a miscarriage. Because Blount lost the baby before they even knew the sex, the formlessness has prevented her from getting a tattoo. “I guess I wouldn’t know what to even get,” she said. Instead, she keeps a pink and blue stuffed animal rhino on a shelf in her closet. She told me that when she’d miscarried, people didn’t consider it a “real” death and so she emailed family, friends, and anyone they’d told of the pregnancy asking them not to talk to her about her miscarriage. Hugs, she wrote, were welcome.

    But the pain — and the need to share what loss taught her — remained. The Ryan tattoo gave her a safe way to do just that, even if that’s not explicitly why she got it. The first time we spoke I asked her about her own experiences with loss and she brought up the miscarriage. On another call, she admitted the connection between the miscarriage and the attachment to Ryan’s death hadn’t initially occurred to her. “After I got off the phone with you, I just sat there quietly for a while,” she said, “I realized they really are connected. We wanted that baby so badly, all our hopes and dreams were wrapped up in that pregnancy. Now I have two kids, but when you’re in the trenches of motherhood it’s hard to remember that childhood is short, that you should be grateful for every moment, that it could all be lost.”

    In July, Jacqui used Instagram to announce that she’s pregnant again, this time with a girl. She’s creating a line of commemorative products with a company that specializes in arts and crafts kits and regularly keeps her followers updated via Instagram posts and her blog. They celebrated what would have been Ryan’s 5th birthday at Disneyland. The night before, she announced their plan on Instagram, inviting anyone who would be in the amusement park to stop by.

    In addition to thousands of candids, Jacqui took a photo of Ryan every day before preschool. Now that he’s gone, she writes him letters. They’ve moved to a new apartment, and while they’ve kept some of Ryan’s toys and his scooter, a lot of his belongings are in storage. She writes of her memories and her anger at herself for not remembering more of their conversations. “I hope you do,” she wrote, adding, “I hope when I see you again you can remind me. Thank God I have these photos to hold onto until then.”

    Every day, Erika flips through her photos of Asia on her phone. On what would have been Asia’s 3rd birthday, Erika posted a Flipagram on Instagram with photos ranging from a sonogram shot of Asia in utero to Asia in the last days of her life. “Happy Birthday” played during the photo slideshow, but when it got to the “Happy Birthday, dear _____,” there was a pause where Asia’s name would be and then the song picked back up with “Happy Birthday to you.” Her commemorative tattoos include Asia’s handprints, footprints, hearts and bows, and the words “Heavenly Asianae” across her chest in a scripted font. Each time I get on the phone with Erika, she seems to have another, and when I point that out, she laughs. “Girl, I’m just getting started,” she said. Next, she told me, she’ll get a photo-realistic portrait of Asia.

    In addition to shots of her growing baby bump, Erika still posts photos of Asia regularly on Instagram. She shares her favorites repeatedly, but as time passes without any new photos, they merely point to Asia’s absence. There are no more videos of Asia or selfies with Asia or photos documenting her growth. “I’m starting to run out,” Erika told me, pausing for a deep breath, trying to suppress tears.

    After Penny died, Jill couldn’t look at photos of her. She’d post pictures on Instagram and all over the house they moved to in Utah following Penny’s death, but Jill would walk down the hallway and turn her head the other way. “I couldn’t bear it; the photos just reminded me of everything I’d lost,” she told me.

    But now, Jill looks at the photos regularly. She’s even turned the garage of their house into a photo studio, and is about to start her first class teaching other moms how to take photos of their own kids. “I really think there are some photos only a parent can capture,” she said. The initiative is tinged with urgency, both Jill’s gratitude for her own photos of Penny’s short life and a haunting story from another friend who lost a child. That friend’s hard drive crashed, leaving her with only 11 pictures of her child.

    As two years without Penny turned into three, Jill began to forget the simple things: how she smelled, what it felt like to hold her. “I don’t want to live a life without Penny,” she explained, so she printed out every single photo she’d ever taken of Penny and bound them in a book. The photos have taken on a new importance and she no longer walks down the hall with her head turned away. “I look at a photo of her and it all just comes rushing back,” she said. “I can feel her in my arms, I can smell her, I can remember her exactly how she was.”