April 1, 2013 9:09:12 AM
Sarah Fowler - [email protected]
It used to be that support groups were most often confined to community centers and church basements.
That was before social media.
Today, social media -- particularly Facebook -- is providing a support system that goes far beyond the community, reaching a sympathetic audience that can number in the thousands and knows no geographical boundaries.
New Hope parents Brynn and Corey Upton believe that through Facebook, thousands of people heard the story of their eight-year-old daughter, Carsyn, who was feared to have cancer. The Uptons believe that through the power of prayer, God healed their child. Carsyn's mother Brynn said she feels that Carsyn was healed because of God's plan and the prayers her daughter received from "prayer warriors" on Facebook.
"I tell everybody that if you need prayer, there are prayer warriors on Facebook who say when they're going to pray for you, they mean it," Brynn Upton said.
The Uptons' story started with a common procedure -- Carsyn was scheduled to have her tonsils removed. But the routine blood work that was to precede the procedure produced some troubling results.
A wild swing in the child's platelets seemed to indicate cancer. In the days that followed, the Uptons' journey included trips to Le Bonheur Children's Hospital and St. Jude Children's Research Hospital in Memphis. During this time of uncertainty, Brynn Upton took to her Facebook page, continuously posting updates about Carsyn's progress and asking for prayers, not just for her child, but for her family.
"We had prayer coming from about every church in Columbus, Jackson, Alabama, and Amory,'" Brynn's update recalled. "People would call that we didn't even know to let us know that they were praying for us and lifting Carsyn's name up. At the end of the day, to sit down and update everyone on all the results that we got was comforting," she said.
Brynn said reading the encouraging words of those who were following Carsyn's journey was a support system like she had never known.
"With Facebook, there is no telling how many posts were on my wall. It was a breath of fresh air to read the uplifting words of people saying they were praying for us."
Before Carsyn was admitted to St. Jude, Brynn admitted that she and her husband felt a pain that no parent ever hopes to go through.
"Carey and I prayed and prayed to let it be us, not our child. It is so hard when something is wrong with your child and you are helpless," she said.
Through it all though, their faith in God and the support and prayers of those on Facebook got them through a difficult journey.
"We were so overwhelmed at the love that the community was showing our family," she said.
Claire Ellis said she, too, feels that her son's Facebook prayer page has been a source of support and understanding.
Ellis' son, Ayden, commonly referred to as "Ace," was born six weeks premature in December. Originally from Columbus, Claire and her husband Jamus, now live in Texas.
Shortly after Ayden's birth, doctors became concerned with his lack of movement and inability to swallow. He was placed in the Neo Intensive Care Unit and underwent numerous testing. During this time, two of Claire's Mississippi friends created a Facebook page to keep friends and relatives who lived out of state updated.
The couple has relatives in Mississippi, Georgia, New York and Chicago and Claire Ellis said she was having a hard time keeping everyone informed.
"It's hard to keep everybody posted," she said. "With a Facebook page, it's much easier. We like to post everything, every time he gains an ounce. Every ounce is a good ounce."
Claire said that she finds comfort and sometimes unexpected humor in the posts on Ayden's page.
"Someone posted they were having a bad week but if Ace could suck it up then they could, too. I kind of chuckled at that one," she said.
Last week, a muscle biopsy test suggested that Ayden may have Myotubular Myopathy, a condition that could result in an elongated body, fingers, toes, droopy eyelids and more. Throughout the entire process, Claire Ellis took to her son's prayer page to update the nearly 1,000 followers.
She included a link to followers so they could educate themselves on MTM but warned those to "have their mind and hearts prepared."
"My husband and I are at our weakest moment after hearing the news today," she wrote. "We have a lot of unanswered questions. We just ask that you lift us up in your prayers. We all pray for a healthy child and we know God would not give us anything we can't handle. This is by far the toughest to grasp."
Claire Ellis said that while it is difficult to write the words about her child, it also offers a form of release.
"It's like therapy," she said. "It's a free way of not having to go to a counselor. We know all of these medical expenses we're going to incur," she said.
Expanding support systems
John Hawkins, a professional counselor in Columbus, said he feels support families receive through social media can be an important coping mechanism.
"I definitely think it's one of the benefits of social networking because it allows people to expand their support system," Hawkins said. "Caretaker fatigue or compassion fatigue can just take so much out of you."
Hawkins said that people often feel isolated by sicknesses, especially rare diseases that few understand.
"It can make you very depressed, very hopeless," he said. " It can wear you out going to doctors' appointments and doing everything you possibly can to get your child OK. People who have very ill children or ill parents or spouses, they often get isolated. The fact that you can get that social support electronically, even from people you don't even know, can be very empowering and a way to really relieve stress."
Hawkins also said that through Facebook, those coping with an ill family member can meet people who may be in a similar situation or can share past experiences.
"There may be people around you who don't really know what you're going through, but on Facebook there are so many people that can get your message. Because it gets shared so much there may be someone who has a sick child or a sick parent that can be a real source of information.
"They know what you're going through. The emotional support psychological support, I think it's great."
Before leaving for St. Jude, the Upton family prayed with their pastor and asked the prayer warriors on Facebook to lift Carsyn up in their prayers.
"They ran almost every test they could possibly run," Brynn Upton said. "The results came back that her platelets were up to almost 400,000. They couldn't give us an explanation, but they knew she was OK."
Crying with joy, Brynn said that she knew the reason her daughter was OK. "I remember telling someone that I wish I could get on top of a mountain and shout, 'Thank you, God! Thank you for the people who prayed for this child day and night!'"
Today, Ayden will be coming home from the hospital, 95 days after his birth.
The Ellises have been preparing to transition from caring for their son in a hospital to bringing him home by setting up a makeshift hospital in their apartment. Every step of the way, Claire is updating Facebook, making sure her new found support system is well informed.
"Not only is it therapy but I feel as if his prayer warriors are family and need to be updated just as my family would be," Claire said.
Hawkins said supporting families such as the Ellises and the Uptons is beneficial not only to them but to those who follow their journey as well.
"There is benefit not just for the person who has the ill child but also there is some benefit to us," Hawkins said. "When we reach out with compassion, it does something to us. It helps me be thankful that my children are healthy and doing well."
Sarah Fowler covered crime, education and community related events for The Dispatch.