When Nechama Greenberg* was 13 years old, she began taking care of a young cousin who had recently been diagnosed with leukemia. He lived in her area and Nechama quickly learned all aspects of his medical situation, sometimes sleeping in his room in case of an emergency. It was through him that she first became introduced to Chai Lifeline. She would often shadow him at their events, and constantly met volunteers who would visit while he was in the hospital. Eventually, the summer after seminary, Nechama spent her first of three summers as a Camp Simcha counselor and she became involved through-out the year as well.
Fast forward over 10 years. Nechama’s baby was born with a serious heart condition. He was on life support (ECMO) already at 1-month-old, and the doctors weren’t sure if he was going to make it. His medical state was extremely fragile. It was during that month that Chai Lifeline held its annual Chanukah party. To create some state of normalcy even in the midst of the darkest moments, Nechama and her husband took their other young children to the party, leaving their baby behind in the NICU.
While they were sitting down to eat, a friendly volunteer came over in a funny hat and costume. It was at that moment that it hit Mrs. Greenberg: “That used to be me. I used to be that friendly volunteer and now I am sitting here as a parent of a very sick child. This could happen to anyone, but never did I expect it to be me.” She burst out crying at the harsh reality; the depth and heaviness of her baby’s life-long medical condition came flooding down.
Being on the other side of the equation has its challenges, according to Mrs. Greenberg. “We all want to give to others. It’s accepting that is difficult.” She wanted to keep all her challenges “inside the family,” but Nechama knew that Chai Lifeline is like family. So she swallowed her first inclination (to tell the volunteers that she didn’t anything) and welcomed the organization into her life.
Chai Lifeline continues to share both the burdens of raising a very sick child and the joyous moments when illness recedes into the background. Nechama and her case manager speak regularly, giving her a safe place to unburden her woes and share good news. The Greenberg children welcome the volunteer visits, Chai Lifeline activities, Chanukah presents, Purim carnivals and family days. They are grateful for special birthday surprises, and dinners ‘on the house.” Chai Lifeline even sent Mr. and Mrs. Greenberg to an upscale restaurant so they could celebrate their wedding anniversary and have some “alone time together.”
Nechama laughs as she recalls a remark her other son made. The Greenberg children got so used to having pizza every time Mrs. Greenberg and the baby are in the hospital. One day the boy turned to her and said, “I really want pizza for supper- can you go to the hospital today?”
“We can have pizza even when I’m home,” she told him. And so the entire family had a pizza dinner.
*We’ve changed the details to protect our client’s privacy.
Touching story.