They were the first to respond and the ones that truly understand what you're going through. They're really truly the only ones who feel what you're going through and can say 'I understand this crazy world.' —Alysa Claverie
SALT LAKE CITY — In 2009 a South Jordan woman was told her unborn daughter was ill. Katelynn had a rare chromosome problem. As family members and friends tried to comfort her through phone calls, Leta Greene found she simply didn't have the time to stay in touch with everyone while caring for her other two children.
That was when she turned to Facebook. Greene created a page, "Caring for Katelynn," which allowed her friends to follow her progress and read the updates she posted.
Just 54 days after her birth, Katelynn died, leaving behind a grieving family.
"Facebook was something I had never thought (to use) to share those kinds of feelings," Greene said. "It kind of accidentally happened, but it opened gateways that people from all over the country and the world — that I actually am still friends with some of these people — reached out to me during that time."
Like Greene, others have turned to Facebook and other online support groups to find solace or connect with those who are feeling a similar pain. It is the new grieving and recovery ground for just about every support group, including Utah groups for reactive attachment disorder, infertility, ataxia, select mutism and more. Searches in Facebook will show groups for almost any support group imaginable.
Kim Shirts Deverall has a four-year-old son who is autistic. She said there are many resources for Big MAK's, or mothers of autistic kids, in northern Utah that she misses out on as a Washington City resident.
That's when she began the Big MAK's of St. George Facebook group. It started with five members, and grew steadily to it's current size of 35.
"It's mostly moms with frustration that are venting on the page," she said. "They don't know who else to complain to or to get advice from."
On March 12, it will be exactly one year since Alysa Claverie's now four-year-old was diagnosed with Pre-B Acute Lymphoblastic Leukemia. When she heard the words, "your daughter has cancer," her mind was flooded with questions.
Her family had just moved to Salt Lake City from Colorado. Her support group was in Denver.
"Not having that support, we would have felt pretty alone with just the fear that you deal with daily, the anxiety, the worry," she said.
But as she joined the cancer world, she also joined a Facebook group with 285 members called Utah Moms with Cancer Fighting Cuties.
When doctors thought her daughter Presley had relapsed in January, it was the other cancer moms who jumped into action.
"They were the first to respond and the ones that truly understand what you're going through," she said. "They're really truly the only ones who feel what you're going through and can say 'I understand this crazy world.'"
Kathie Supiano, clinical social worker and program director of Caring Connections, a bereavement counseling program, said there are many opportunities with technologies that can be positive for those who need support.
She said online support groups — like Facebook, Skype, Adobe Connect, blogs and other forms of social media — give users a sense of anonymity that make participants feel more comfortable. She said it can connect those who need support from any location during any time of day, particularly in the middle of the night.
"They don't call it the witching hour for nothing," she said of the most difficult time of day for those who are grieving.
However, Supiano warns that groups should be managed by a professional.
"What would the group do if someone was suicidal?" she said. "That doesn't happen very often, but it could happen."
She also said there are some aspects of a human relationship that can't be formed online.
"You don't want people to engage online to the exclusion of human, face-to-face, contact," she said. "What a lonely person needs is people. Even the best Internet group, even the best one, is no substitute for a human hug or a human handshake or having a...Coke with a person who can look you in the eyes and offer support."
Ken Hansen, Unified Police detective, said participants in online groups should be careful.
"If you open up your life or your Facebook to strangers, you never know what's going to happen," he said.
Facebook does regulate pages and groups, but sometimes false identities are created, he said. Supporters are urged to do their research, set their privacy settings accordingly and contact law enforcement if they are still unsure about a group or page.
"Certainly you can appreciate someone going through that (difficult situation) and maybe provide support, but I would be careful before I did anything else," he said.
Greene said she was shocked at how much attention her Facebook page received.
"There were, at one point, like 800 members to it," she said.
What began as a way to share Katelynn's status after heart surgery, quickly became more. It was one of her only contacts with the world outside when she was in the hospital.
"I could just go and I could type," she said. It becomes a place where she shared more than just updates — she shared her fears, hopes and faith.
"It ended up becoming... sharing more than I meant to," she said.
Problems with her hip and back left Greene grocery shopping in a wheelchair just two weeks after her daughter's death.
She felt upset and alone. She felt robbed that she had to do everyday tasks in the wake of such grief.
A stranger approached her and asked Greene why she was in a wheelchair. The woman helped Greene with her shopping and offered an inspiring story of a women who recently lost her child and was in a wheelchair.
"She started telling my story," Greene said. "That woman that she's finding inspiration in was me."
In that moment Greene said she realized Facebook had allowed her to emit her purest feelings, rather than the negative ones she felt that day in the grocery store.
"How do you explain the value of people who reach out to you?" she asked. Facebook "gave me some support that was really valuable."
A place of understanding
Deverall uses the page to rally support for autistic-friendly causes, post questions about safety for their children, or about events that welcome kids with special needs.
And sometimes, she likes to post something to keep lighten the mood — something that only moms with kids with autism can relate to.
"Here's to the caretakers, the poop whisperers, the up-all-nighters. Here's to you, autism mom. Rock on, woman," a post from Feburary 13.
"Some moms are a little overdramatic, but it's a place where you can say these things and not be judged because we can all relate in on way or another," she said. "We definitely understand."
Deverall's son will soon be starting kindergarten. She knows where to turn with questions. It's the kind of support she said she can't get anywhere else, and it's available 24-7 for uplifting messages like, "You will get through the day," or "we had that yesterday and we're alive today."
Social workers told Clayerie her as Presley started maintenance treatments, month 11 of months of a two-and-a-half-year treatment for leukemia patients, some families and friends would stop calling.
"It's kind of true," she said. "Most support now is with other cancer moms. They understand how long cancer treatment is."
Clayerie said sometimes cancer moms pull away. They want to take a step back into "normal life."
"We try to be normal, we try to ignore," she said — that cancer isn't apart of their lives. "But after a while it comes back."2 comments on this story
It comes back with each fever that requires a trip to the emergency room instead of a simple pain reliving medication. Or a playdate canceled because their child's white blood cell count isn't where it should be.
"Little things become big things," she said. "It's not just like a normal kid."
She said she and the other cancer moms always come back together. For their own support and to support others.
"We can't not know how the other cancer kids are doing," she said.