When Miri Baum gave birth to her fourth child, she spent the better part of the first year and a half of his life in and out of the hospital.
Baum gave birth to her son, Rafi, at 30 weeks gestation.
As a very premature baby, Rafi spent the first four months of his life in the NICU, including his first Passover. When his second Passover came around, Baum and her family celebrated the holiday with her mother in California. But this year they are spending it at their home in Baltimore.
When preparing for Passover, Jewish law requires families to clean their home from chametz. Depending on one’s observance level, cleaning and shopping for the holiday can be stressful, making sure they get to every nook and cranny of their house, car and even clothes. They also have to shop for kosher for passover foods, bring out their seder plates, and then when it’s all said and done, they have to clean up.
For families with sick children like Rafi, the added stress of the holiday can end up being more than overwhelming.
“Every day is a challenge. But when you also throw into the regular everyday routine, the fact that there is a very major, significant holiday coming up like Pesach or Passover has a lot of components involved in it that can stress anyone out, what we like to think of is, ‘how can we make this easier?’” said Racheli Daniel, the director of Chai Lifeline Mid-Atlantic.
Chai Lifeline is an international support network for families with children who have serious illnesses. In the Mid-Atlantic region, which includes parts of Virginia, Washington, D.C., Maryland and Delaware, Chai Lifeline supports 160 families, anticipating what they need from transportation to after-school programming for siblings of children with serious illnesses and much more.
At first, Baum said, she and her husband thought Rafi would be like any other preemie. They’d stay in the NICU for a little and then be on their way.
“We were in Hopkins at the time. [Rafi] was in the NICU and Chai Lifeline volunteers would stop by and come in the room [and ask] ‘Do you need anything? Can we bring lunch? Can we bring dinner?’ And I was always like, ‘No, thank you. I’m good.’ Because I felt silly like, I’m fine,” she explained. “But then it was kind of becoming clear that he had more and more medical difficulties, and it was going to be a little bit of a longer haul. And then every time the case manager that I work with now would come to visit, she started coming by, and she would bring a little bag with, like a salad or something for lunch, and then offer for volunteers to come be with the kids after school or take them out on a Sunday.”
Rafi has a shunt that requires frequent surgeries. He was also diagnosed with Cerebral Palsy, Craniosynostosis and requires a feeding tube. As Passover approaches, Baum would typically be cleaning and shopping now. Instead, this week, she is preparing Rafi for surgery.
“A huge box showed up at my house this week of a bunch of stuff for Pesach. There’s like, mixing bowls, there’s games for the kids, there’s a little vacuum,” Baum said. “It’s one less thing off my list that I didn’t even [realize] was on my list.”
“There’s no one-size-fits-all when it comes to a medical journey. Every family is unique,” Daniel said. “One of our flagship programs [is] our beautiful Passover care packages that we send out.”
For the children, the care packages include books, games and crafts. For the parents, there’s wine, disposable plates and cups for less clean up, a gift card to a local grocery store, and even a certificate for a wig wash and set for mom.
“There are families who we engage with a service that helps kosher their kitchen to ensure that their kitchen is ready, because that’s hours of work and labor that they may not have the capacity for,” added Daniel.
“They think about the whole family,” Baum said. “They have been above and beyond with dinners and lunches and ‘Do you need anything else?’ and babysitters for the kids and everything that comes along with that.”
For Baum, most of her family lives out of state. While her husband was at work and she was in the hospital, she had to rely on friends to watch her other children. But when she learned about Chai Lifeline, she said, “I felt so relieved that I didn’t have to ask my friends again.”
“I have amazing community, amazing friends and family. Most of my family’s out of state, and they helped how they can. My mom came back and forth 100 times. And my friends are fantastic. They’re always offering to help watch the kids, to send dinner. But I feel awful. I know they’re all busy. I know they all have young families, like, I don’t want to ask them all the time.”
Daniel explained that one mother had a daughter diagnosed with cancer. At the beginning of her cancer journey, “everyone was sending meals, everyone’s offering to take the kids out. Everyone is there, and then eventually everyone goes back to real life and real routine.”
“Chai Lifeline doesn’t ever go away. We’re there for the long haul. We speak to our families regularly. We are in touch with them regularly. We are evaluating with them all the time; what’s changed, what’s not changed,” Daniel said. “For them to feel like there’s someone at their back, helping them carry [the weight], it is a very powerful and very encouraging feeling.”
