For families struggling with childhood illness, Chai Lifeline is a best friend
When Molly May’s 11-month-old son was diagnosed with kidney cancer, the family was living in New Jersey. Despite in-patient treatments, multiple daylong stays and the overall stress that the Mays faced, one constant was Chai Lifeline. Each day, representatives from the New York based nonprofit met with the Mays, brought kosher meals and provided services — volunteers offered respite care and a social worker was assigned — all in an attempt to ease the burden that the illness had borne.
“I hope that you never know what it’s like to have a seriously ill child, but when they’re that young there’s nothing you can do but be there with them; you can’t leave them alone for a minute,” said Linda Dorenberg, May’s mother. “We were so grateful to the people at Chai Lifeline, it was just amazing.”
May’s son is now 8 and cancer-free. The family has since relocated to Pittsburgh. Over the past two years, May and Dorenberg have worked to establish a satellite chapter of Chai Lifeline.
“Here in Pittsburgh, first of all, we want to make a bond with the families so they know that they’re not alone,” said Dorenberg. “We are trying to bring some joy to the families and support the families.”
Chai Lifeline is an international nonprofit, self-described as “dedicated to meeting the nonmedical needs of seriously ill children, their families and communities.” The organization promotes a mission of enhancing lives “through programs and services that offer friendship, good times, great memories and social and emotional support.”
While the organization is well known throughout the New York area, it is less familiar in Pittsburgh. Dorenberg and May are trying to change that. To date, they have organized volunteers, provided services and held gatherings for families. Several weeks ago, the satellite group celebrated Chanukah with families affected by serious illness or bereavement.
“We had a nice Chanukah party. The kids who are there don’t know who is sick and who isn’t; they’re just all there and play,” said Dorenberg.
One of the party’s aims was to offer inclusion.
“Either being a child who is bereaved or suffering from an illness, it’s very easy to feel excluded because people don’t know what to say or what to do,” said May. “Getting those families together allows for something in common without having them explain everything.
“The Chanukah parties we had happen to connect a few families so that they could learn that they are not alone in their troubles, struggles and the various issues that they have been having.”
Although gatherings such as Chanukah parties bring families together, the main focus of Chai Lifeline is “really to serve individual families,” said May.
In so doing, the satellite group has worked with people across the Jewish spectrum.
Chai Lifeline serves “any and all Jewish families,” said May. “Everything is kosher and shomer Shabbos, but you don’t have to be a shomer Shabbos or kosher family for Chai Lifeline to work with you, and not all of the volunteers are Orthodox/observant; they reach out to all different volunteers.”
Adina Shayowitz is a volunteer coordinator with the Pittsburgh Chai Lifeline group. She learned of the opportunity through a friend who had been volunteering.
“We want more people to know about this,” said Shayowitz.
And while the Pittsburgh group would like to promote its presence, disseminating information has been difficult. Dorenberg suggests that the lack of Jewish chaplaincy at Children’s Hospital is to blame.
“I want people to know that we don’t have a Jewish chaplain at Children’s Hospital,” she said. “People come to Children’s Hospital from all over the world, and we don’t have a way of knowing if someone comes from another area and needs help. If someone is Orthodox, they will come and people will know about it because they will make their preparations. [But] there are people who come who might not be shomer Shabbos [and] might not be strictly kosher but they have Jewish children, and if there’s no Jewish chaplain and no one to say we can help you, then it’s hard for us to know if someone is here from out of town.
“We want to do more for children,” she added, “but it’s pretty hard — with the HIPAA laws — to get access to patients. Without a Jewish chaplain it’s hard for us to crack that code. It’s hard to find out who is there and what they need.”
For now, the satellite group has been connecting with families through “word of mouth, people we know or friends of friends of friends,” said May.
But the group would like to grow and is confident that its work is necessary.
“I can’t stress enough what happens to a family when they have to deal with serious childhood illness,” said Dorenberg.
“The focus really is on making it easier for families with children who are in these situations so that they can better take care of their children,” said May. “When Chai Lifeline supports families, families can achieve some level of normalcy and do some things that families normally do.”
Enabling normalcy is a benefit, said Shayowitz. “It’s nice to try and bring happiness to kids’ lives and help them have normal experiences.”
“You try to ease the pain of childhood illness,” said Dorenberg. “That’s just what you try to do.”
For information about volunteering with Chai Lifeline, visit chailifeline.org/volunteer-form/ny.
Adam Reinherz can be reached at firstname.lastname@example.org.