A wish at the Wall

Kids with differing abilities enjoy special experiences with Chai Lifeline.

By ALAN ROSENBAUM
February 22, 2019 06:42
A wish at the Wall

‘THE TEENS, part of Chai Lifeline’s 20th annual Hartman Family Foundation Wish at the Wall Israel tour, are having the time of their lives.’. (photo credit: CHAI LIFELINE)

 
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On a cool and overcast Jerusalem morning, a group of boisterous teens on a 12-day trip board the tour bus at their hotel for a one-day expedition to Masada and the Dead Sea. Like most students their age, they spend the 90-minute bus ride through the Judean Desert laughing, singing, chatting with each other and their counselors and occasionally listening to the tour guide’s explanations.

It appears to be a routine mid-winter tourist visit – hardly a noteworthy event – until the bus arrives at its destination and its bottom compartment is opened. Inside are wheelchairs and walkers for 14 teenagers – eight girls and six boys – all of whom suffer from a variety of serious, chronic ailments, including spina bifida, cerebral palsy, blindness, bone disease, brain injury, and arthrogryposis, a condition characterized by stiff joints and abnormally developed muscles, which greatly limit the range of motion. The passengers slowly disembark, some carried by a parent or aide, others limping or hobbling with braces, most settling into wheelchairs, all with huge smiles on their faces.

The teens, part of Chai Lifeline’s 20th annual Hartman Family Foundation Wish at the Wall Israel tour, are having the time of their lives. Chai Lifeline was founded 32 years ago by Rabbi Simcha Scholar, who had been a successful rabbi and teacher in the New York area.

“The first program that Chai Lifeline ever developed,” he explains, “was Camp Simcha. Camp Simcha began 32 years ago with eight children as a camp for children with cancer. After we had this 10-day or two-week summer experience, we realized that there were a lot of other things going on with these families– more than fun and frolic in the sun for a few days. Illness affects the entire family – Mom, Dad, siblings, community, schools – and medication can make the child feel better. But in order for the family and the child to emotionally survive and become productive citizens they need a lot of help. We developed Chai Lifeline into a year-round organization that deals with the emotional, psycho-social, financial and recreational needs of the family. We were the first organization of its kind to deal with life-threatening illnesses in such a public manner. We can’t control why people get ill. We can’t control why there are crises and tragedies in this world. One thing we can control is the ability to help them in a sophisticated, professional way.”

FROM ITS modest beginnings, Chai Lifeline has blossomed into a worldwide organization with 14 offices throughout the United States, Canada, Belgium, the United Kingdom and Israel, helping 5,500 families on a daily basis. Chai Lifeline is best known for Camp Simcha, a two-week, medically supervised summer overnight camp located in Glen Spey, New York for children and teens with cancer and other blood-related illnesses. Chai Lifeline also operates Camp Simcha Special, which was the first overnight camp designed to meet the medical and social needs of children and teens with multiple chronic medical conditions and disabilities.

In addition to Camp Simcha, Chai Lifeline provides numerous special programs including I-Shine, a mentoring and homework help program for children in homes affected by illness; meal deliveries to hospitals or homes; insurance advocacy counseling; family respite and retreats; transportation to medical appointments; and Project Chai, a crisis intervention program, which most recently was called in after the Pittsburgh synagogue shootings in October 2018.

Rabbi Shlomo Crandall, director of Chai Lifeline’s Midwest Region, and Israel trip organizer, served as a congregational rabbi in Indianapolis before becoming director of Chai Lifeline Midwest in 2007. He explains that the original Wish at the Wall trip was designed as a type of “graduation trip” for Chai Lifeline children who were finishing their cancer treatments. Several years ago, the Israel trip was expanded to include a trip for teens with chronic illnesses. The Wish at the Wall trips alternate each year between bringing children with cancer and youngsters with chronic illnesses.

The trip is staffed with counselors who have worked at Camp Simcha and who know the children from their camp experiences, as well as with a nurse and two medics who travel alongside the tour bus in a Magen David Adom ambulance, kindly provided by Avi Hovav of MDA Jerusalem, in case of medical emergency.

Each child is allowed to bring one parent on the trip, which is sponsored by the Chicago-based Hartman Family Foundation and the greater Chicago Jewish community. Scholar says that Chai Lifeline would like to bring many more children to Israel annually, but current budgetary constraints make it impossible.

“The community has been very generous to us and we’re very appreciative of the community support. But the growth of what we are experiencing here is phenomenal. We need community support to be able to continue our growth,” he says.

The message of Chai Lifeline is one of inclusiveness. Says Scholar, “Our job is to give them a safe haven where they can learn that “disability” is an inappropriate word. We don’t use the word “disability” at Chai Lifeline. We only use the term “different ability.” Every child has different abilities and we need to create an environment where every child feels proud of who they are how they’re able to function in the world and be productive citizens.”

Watching the children on the bus enjoying each other’s company and sensing the camaraderie underscores the point. On this trip, they are thrilled to be treated like any other kids. The companionship and closeness that is engendered is not only between the teens but between each child and the parent that joins them. Adds Crandall, “The purpose of the trip is really for that special bond between parent and child that spend so much time together in hospitals and over sickness. Now they can spend time together really enjoying.”

THE INCLUSIVENESS of Chai Lifeline extends to religious diversity and observance. Participants on the trip – as well as in other Chai Lifeline programs – come from all denominations within Judaism. Scholar declares, “We are an organization where ponytails and payot (sidelocks) meet. We believe in Am Yisrael in its totality. Someone wears payot, someone wears a ponytail and someone has a ring on their finger or a ring in their nose – it’s all the same.”

Rachel Raitman, 17, from Pasadena, California, suffers from a rare bone disease and is unable to walk. Each time she and her father get off the bus, he carefully lifts her from her seat, carries her and gently places her in her wheelchair. For Raitman, one of the highlights of the trip has been their visit to the Western Wall on Friday night.

“I got lifted up to see the sea of men on the other side. I saw a massive sea of people, and it was really beautiful, especially because we were across from the men who were on the trip and you could recognize the people. You could see the different sorts of layers, like Orthodox and Conservative.”

Throughout the trip, the teens – who come from Phoenix, Baltimore, Milwaukee, Toronto, Lakewood, Brooklyn, Miami, and South Bend – visited a wide variety of places and shared different experiences – from riding ATVs (all-terrain vehicles) to target shooting, touring Jerusalem, visiting an IDF base near the Syrian border, ascending Masada on the cable car and floating in the Dead Sea. Nachman Maimon, program director at Chai Lifeline, and director of Camp Simcha and trip medic, explains that the trip removes the obstacles and limits of their lives.

“If another kid is climbing a mountain, we’ll climb a mountain. If another kid is jumping off a cliff or riding an ATV, or riding on a camel, we’ll do the same.” Maimon adds poignantly that one girl who rode a camel marveled and said, “I never saw the world from high above. I was always down below watching.”

Rabbi Ari Dembitzer, head boys’ counselor, and a long-time Chai Lifeline staffer, says that there is something unique about Israel that appeals to Chai Lifeline patients. “Why do we take them to Israel?” he asks rhetorically. “I believe that anyone who lives in Israel understands that the only way to succeed in life is to fight. Nothing is taken for granted here and I think that these kids are the ‘rebbe’s of that – we understand that very well.”


Scholar notes that while Chai Lifeline’s professional staff numbers approximately 200, it has a vast network of 7,000 volunteers worldwide, who, he says “are very good at what they do. We take volunteers very seriously.”

The extent to which Chai Lifeline trains and prepares its staff was highlighted by an incident that took place during the visit to the Dead Sea. A number of teens were in the healing waters, assisted and supported by counselors and the medics. One of the participants, walking with his father, was approaching the water’s edge. He suddenly lost consciousness and collapsed on the beach.

Quickly identifying what was happening, the medic called the remaining counselors who were near the water to assist those whom he had been helping, and sprinted out of the water onto the beach, turning his attention to the stricken child. A second medic ran to the ambulance, brought the necessary equipment, and the boy was treated in the ambulance by the medics and the nurse. A mobile intensive care ambulance subsequently arrived and the teen was airlifted to Soroka Hospital in Beersheba, where he was treated. When the boy had recovered and was cleared by his doctors, he returned to the tour.

Crandall, reflecting on the preparedness and quick reaction of the staff and medics, says with some amount of pride, “At that moment, Chai Lifeline was at its best.”

THE VOLUNTEERS say that their relationships with the teens are very close.

Hershy Krausz, a Camp Simcha counselor from Brooklyn who was participating in the Israel tour, says, “It’s not like a camper-patient relationship. There is a feeling of camaraderie with them. It’s not like I volunteer and I have a patient. We are friends – we are family.” Krausz explains that after camp, he stays in touch with his assigned camper, calling him, texting him and sending him a gift during Hanukkah. Krausz and his fellow counselors expend huge amounts of energy throughout the day, helping parents push wheelchairs up the rocky paths of Masada, leading the teens in raucous singing on the bus and making sure that everyone is having a good time. An informal poll conducted on the bus with this year’s tour participants on their thoughts about the trip returned endorsements ranging from “amazing” to “fantastic” and “incredible.”

Michelle Zeldin, from Toronto, participating with her daughter Paige, 14, explains that the counselors’ support extends beyond physical assistance.

“We’re also very grateful to the counselors and the staff of Chai Lifeline on this trip, because it is a physically demanding in places and they’re always the first ones to help – “Can I push?” “Can I do?” To see the love that these counselors give these children is amazing – it’s unconditional love. They love them back, but they can’t help them back in the way that they help them. You can never give back to Chai Lifeline what they’re giving to us.”

The parents on the tour appreciate the peace of mind, however temporary, that this trip affords them. Says Crandall, “One mother said to me, ‘My favorite part of the trip is that I don’t have to think about what I’m doing. You tell me what to do. Tell me when to eat breakfast. Tell me when we’re going, and I just enjoy.’”

Nachman Maimon says that he reminds the counselors taking care of the teens at Camp Simcha or on the Wish at the Wall that while the tour is indeed exemplary, it is the mothers and fathers who have to attend to their children’s needs during the rest of the year.

Julia Almoslino, of Phoenix, visiting with her son Yaakov, 17, explains, “When you have a child with a disability, traveling in general is an undertaking and the thought of coming to Israel with a child with a disability and a walker and maneuvering around never seemed to be something that was in the picture. Coming with Chai Lifeline enabled us to share something positive together. We’re always going to doctors and therapies and having to deal with day-to-day issues that aren’t always so nice, so it’s nice to be able to do something that’s fun, something that neither of us thought would be possible. It’s a dream come true.”

Parents revel not only in sharing their trip experiences with their children but with other parents as well. Sorah Ross from North Miami Beach, who is on the trip with her daughter Rivkah, 17, explains, “Being part of the Wish at the Wall Chai Lifeline family and seeing other moms and their children and other dads and their children, gives me the feeling that I’m not alone and we’re all in this together. Each of us has been given us a special gift and seeing other’s people’s treasures helps us appreciate our own treasures.”

What do chronically ill teenagers wish for when they are at the Wall? Says Crandall, “For everyone it’s different. Some ask for good health; others pray for the wherewithal to deal with their illness, while still other just want to be a ‘normal’ kid. For others, it’s Torah scholarship and having a deeper relationship with God.”

He adds that one parent reported to him that while living in Israel many years ago, doctors had learned that her baby would be born with spina bifida. They recommended that she return to the US, where her child would receive better medical care. The years went by, and she never returned to Israel. Now, 17 years later, she and her daughter were returning to Israel as part of the Wish at the Wall Israel Tour. “I brought my daughter to America,” she said, “and my daughter brought me back to Israel.”

Leaving the Dead Sea in the late afternoon, the teens were disturbed to learn that one of their fellow participants had taken ill. Reassured by the staff that he would recover, they quickly returned to their loud music and banter, while enjoying a spectacular sunset over the Judean Desert.

When the bus arrived at their Jerusalem hotel, the rain was falling steadily. The teens had to carefully leave the bus and navigate into their wheelchairs; their spirits, though, remained high, looking forward to another day in Israel.

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