For Laura Rundell, Wellness Coordinator at Clyde-Savannah Central School District, and her family, March 2015 held the stuff of nightmares. Rundell and her husband, Adam, were told their unborn son, Sam, was diagnosed with trisomy 18, also known as Edwards syndrome, a rare condition caused by an error in cell division. Trisomy 18, they learned, is life threatening to babies, even before birth.
After the diagnosis, Rundell read A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief, by Deborah Davis, a book about experiencing pregnancy with a terminal child. She says it gave her a treasured perspective. Rather than dwelling on Sam’s disease, Rundell, Adam, and their three children—Hannah, Madie and Johnny—chose to focus on the time they did have with Sam.
Every two weeks Rundell and Adam went in for an ultrasound and were able to spend an hour each time watching Sam, who continued to grow, on the monitor. They recorded his heartbeat and brought it to Build-a-Bear Workshop to place inside a stuffed bear.
“We each have our own bear with Sam’s heartbeat,” Rundell says.
The family took their bears on family outings—a great way to include Sam in the experience.
Sam was born in June. He lived for two hours, a brief but joyous period of time, Rundell says.
“We were blessed that he was born with a beating heart,” she says. “You never know how much time you have with this disorder.”
While Rundell handled the devastating situation with grace, she was in anguish. In her grief, she found a Facebook page run by Lexi Behrndt, a writer who had lost her 6-month-old son, Charlie, to complications from a congenital heart defect, just days after Sam’s death. Rundell reached out to her. Behrndt recommended Rundell join a private Facebook support group that she had organized. All summer, connecting through the group, Rundell found support when she needed it most. By fall, Rundell felt she was ready to leave the group and move forward.
Around the same time, Behrndt was starting a project called On Coming Alive. She was emerging from an awful year. Within nine months she had lost her infant and finalized a divorce from an emotionally abusive relationship. To help her heal, she began journaling on her blog, Scribbles & Crumbs. People began to read her entries and were soon telling Behrndt that her words were helping them.
As Behrndt worked through her own grief, she discovered that, as she began to mend, many people were uncomfortable with her newfound happiness.
“It was as if my coming alive in the midst of mourning was taboo—that the only way to remain close to my lost child was to mourn indefinitely,” she says. “People unknowingly made me feel guilty for having moments of joy.”
Behrndt decided she wanted to provide a platform where those who have suffered could share their stories of survival and wisdom to serve as a counterpoint to those who would judge. She wanted to address all types of deep suffering, including depression, divorce, death, abuse, illness, abandonment and addiction.
On Coming Alive is that platform.
It was originally launched in February as a section on her blog. She then moved it to its own dedicated website, which debuted with 72 stories, including one by Rundell called Wrap Me Warm.
Today, Behrndt is inundated with submissions to On Coming Alive. She shares one story per day and includes excerpts on Instagram. While she cannot accept every submission, she and her volunteer team try to acknowledge each one in some way.
“The best way to mend is through real people, real stories from those who experienced real suffering and are rising above the ashes,” Behrndt says.