Scanning her inbox last fall, Becky Benson happened upon an unusual request from a pregnant friend, Emily Rapp: Would she mind if Rapp gave the baby a middle name to honor Benson’s younger daughter, Elliott? If the proposition sounded weird to her, the email went on, she should just feel free to forget it.
“I was sitting in front of my computer going ‘yes, yes, yes,’” elated that “a tiny piece of [Elliott] could live on in a beautiful new being,” Benson recalled.
Rapp’s request was an expression of how close the two women had grown in recent years.
The National Tay-Sachs and Allied Diseases Association had connected Benson and Rapp over email, shortly after Rapp learned that her 9-month-old son, Ronan, had infantile Tay-Sachs. About a year and a half earlier, Elliott been diagnosed with the same terminal genetic illness, which claims most affected children by age 4. Rapp refers to Benson as her “grief mentor” — the person with whom she could discuss everything from the logistics of caring for a child with Tay-Sachs to the sadness of witnessing Ronan slowly slip away.
“Day or night, no emotion was too intense [for Benson], and there was no judgment,” said Rapp, a prolific writer and the author of the memoir “The Still Point of the Turning World” (Penguin, 2013) about Ronan’s life and illness.
On the surface Benson and Rapp had little in common. Some 1,500 miles and 10 years separated them. Benson, a devout Christian, had married her high school sweetheart and settled in Washington State, not far from where she had grown up; Rapp, who is secular, went to Harvard and lived a rather nomadic existence before marrying and giving birth to Ronan in her mid-30s.
“We otherwise wouldn’t have known each other or even attempted to be friends with each other,” Benson, 30, told the Forward. “But when you have this one big life-defining thing it common, it opens the door to see other things that you have in common that you might have missed.” The two women, for example, share a quick wit and a resolve not to let grief be the only thing that defines them.
For more than a decade, NTSAD has been connecting families like Benson’s and Rapp’s. This provides newly diagnosed families with an early peer-to-peer connection and a built-in support system for when they attend their first NTSAD conference. (That’s where Benson and Rapp met in person for the first time, back in 2011.) In fostering these connections, the organization takes into account, among other factors, age at the time of diagnosis, relationship to the diagnosed and the families’ approach to medical interventions; both Benson and Rapp, now 40, opted for comfort-care over life-extending measures.
“It’s very empowering to know someone else is going through this with you,” Kim Kubilus, NTSAD’s director of family services, explained. “You don’t want anyone else to feel this pain, but a pain shared is a pain lessened.”
Elliott died at age 3 of the disease in 2012, and Benson went on to self-publish a memoir, “Three Short Years: Life Lessons in the Death of My Child.” Ronan died in 2013; he was 2.
Rapp’s daughter, Charlotte Mabel Elliott, was born in March. Benson will meet the little girl for the first time in October. “Charlotte is such a special connection to her brother, Ronan, and to my Miss Elliott,” said Benson, referring to her daughter by her nickname. “In my mind, she represents the beauty of the continuation of life itself. I have a love for her I can’t even explain.”