For some parents, news of a child’s life-threatening illness means first you cry, then you turn to social media.
The recent public death of Emily Beazley, the 12-year-old girl from Chicago’s Mt. Greenwood neighborhood who courageously fought cancer, has cast a spotlight on pediatric cancer — and also what it means to cope and grieve in the digital age.
“What’s important is to realize there are no ‘shoulds’ in how you do this,” said Ellen Rosendale, director of family services at Lurie Children’s Hospital, in Chicago. “Our parents all cope differently and you never know how you’re going to be until your child is facing a serious medical crisis.”
When Emily died on May 18, the news was shared on Facebook — as were most of the ups and downs of her illness over the last four years. Such candor earned Emily near-celebrity status — along with designation as an honorary police officer, a street naming and a phone call from Taylor Swift, among other tributes.
Such openness is a relatively recent phenomenon and can be therapeutic, experts say.
“With many of these diseases, parents are inspired by their child and they want to share,” Rosendale said. “They often find meaning … and (social media) is a way of publicly telling a very powerful story.”
Even in the 10 years that she has been working at Lurie, Rosendale has seen differences in how people navigate this stressful time. The rise of Facebook, Twitter and sites such www.caringbridge.org — which allows patients and their loved ones to widely share updates about illnesses — has ushered in an era of more transparency. But rather than being about gaining more exposure, it has actually been a way of establishing some boundaries.
“These sites can be enormously helpful because it means that when parents come home from the hospital, they don’t have to tell the same story 20 times. It’s a way of taking control,” Rosendale said. “It’s frequently the only control that they have.”
Public forums also can be a way for the community to organize help — preparing meals, walking the dog, picking up siblings from school — without intruding on the family. Others use social media as a way to demystify illness and raise funds for research they hope will someday save their child’s life. That was the motivation for Ann Slaw, of Buffalo Grove, Ill., who has been a relentless — and public — advocate for her son, Andrew, who was diagnosed at age 4 with a rare genetic disease called familial dysautonomia that is almost always fatal.
Now 23, Andrew Slaw is among a small group of patients who have survived into adulthood. Still, he has been hospitalized more than 30 times “and many of those times we were planning a funeral,” his mother said.
From day one, Ann Slaw decided that her son’s health challenges would be an open book. That meant starting a foundation and a website, www.fdnow.org, and recruiting scientists to their cause.
During the first week of school, Andrew shared his illness with the class — telling them, for example, how his skin could turn blotchy while eating. “We wanted others to understand that he had a neurological condition … that he wasn’t some weird, red-faced kid,” she said. “From the beginning, our goal was to educate and make people feel at ease.”
Raising awareness goes hand-in-hand with raising money, for which social media has become a valuable tool. Since 2008, Slaw said the foundation has raised between $200,000 and $300,000 annually for the cause.
“I think because of our laser focus, we always pushed forward,” she said. “If others wanted to join the journey, they were free to … and if they didn’t, they were free not to.”
Donna Schur Goldman recalled that it was a very different situation back in the early 1960s, when her sister died of Hodgkin lymphoma at age 11.
“My parents shielded me. I knew my sister was sick, but not the extent of her illness. Everything was done very quietly,” she said. No one chronicled her sister’s two-year battle. The news was contained to family and close friends, said Goldman, who was 14 at the time of her sister’s death.
While she was too old to need babysitting while her parents were tending to her sister, she does remember neighbors in her subdivision checking in on her — without ever really saying why. “It was a much more private affair and solitary journey than today, not because others wanted to exclude you, but because they were possibly uncomfortable with the idea of a child being ill,” she said. “It was just a different kind of normal.”