A Welcome Respite

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Jerusalem Post – Jun 6, 2013

Fifteen-year-old Haim lives at the ALEH Center for severely disabled children in Jerusalem.

Wheelchair-bound and in need of 24-hour care, he can only eat with the aid of a feeding tube. He had never been taken out of the state-of-the-art care center for a significant amount of time before, until Amihai, 18, a volunteer at ALEH, insisted that he be included on the trip to spend a Shabbat with host families in the southern town of Merkaz Shapira.

ALEH’s four centers provide round-the-clock care, education and rehabilitation to around 650 children with medical conditions such as cerebral palsy and Down syndrome, as well as genetic disorders including Tay-Sachs, Canavan disease and Rett syndrome. The center in the capital is home to 80 children, all of whom are unable to walk, talk or attend to any of their basic needs.

The idea to bring a group to experience Shabbat with a community came directly from the ALEH volunteers, who number almost 200 in Jerusalem. Although the volunteers always attempt to make the day feel special at the Yirmiyahu Street campus, an overwhelming feeling grew that the children deserved to spend a Shabbat in a real family setting. With a sizable group of volunteers from Merkaz Shapira and the community happy to participate, the town nestled on the road from Kiryat Malachi to Ashkelon was chosen as the perfect location.

In the end, after learning from nurses how to operate Haim’s feeding tube, Amihai’s persuasion paid off, and he joined the group – bringing the number of children to 28. With two volunteers per child and a team of nurses and physiotherapists, the crowd which set off from Jerusalem last month in search of an authentic Shabbat experience tallied almost 100.

In Merkaz Shapira, the mood was electric, with the two wheelchair-friendly buses receiving a royal reception as they drove past brightly colored welcome posters decorating the main road to the town. Inside, a giant banner crowned the entrance to the community hall, where most of the weekend’s activities would take place.

With music playing, djembe drummers – the kind you see escorting bar-mitzva boys – set the rhythm, as excited local children who had received special training from ALEH clambered onto the buses to embrace their guests and celebrate their arrival.

Dancing into the hall, a large circle formed with each child aided by volunteers, freestyling their way to the center to receive a personal welcome. To the mix of the drums, clapping, whistling and cheering, all of the children had their turn: 17-year-old Hananel was lifted up high in his wheelchair, 16-year-old Rafael helped out onto his feet, supported on either side by 19-year-old volunteers Michael and Elyashiv, the latter a soldier who arrived straight from his base, choosing to spend a rare free Shabbat with the group. Others were carried on the shoulders of their strapping, costume-clad volunteers.

Somewhere amid all of the fun, Amihai, wearing a bright green suit, wheeled Haim into the circle for his moment, zigzagging him into the center. With a pair of sunglasses resting on his head, he soaked up the energy surrounding him, spending a few seconds longer in the middle than the other children and receiving an encore of frenzied applause and cheers as Amihai led him back to his place. Haim was perhaps a symbol for the ALEH team of the efforts they had put into actualizing this dream, and the months they had spent fighting for it.

The Shabbat was months in preparation, with the extra travel and staffing costs reaching NIS 20,000, much of which the volunteers raised themselves. In addition to the young community members who traveled to Jerusalem for training on how to interact with the children, an ALEH team visited Merkaz Shapira to scout out the homes where the children would be staying, advising homeowners which furniture would need to be moved to make access for wheelchairs and to ensure there was ample floor space for the children to sleep. The center also supplied a large number of thin mattresses to each home to be used for playtime, not to mention the individually packaged bags for every child, with snacks, clothes and medicines carefully prepared days ahead of the trip.

There are volunteers both young and old at ALEH, although most are between the ages of 15 and 21. A steady flow of 20 seminary girls visit throughout the day to say a prayer with each child, and to sing to them every night before they go to sleep.

The volunteers don’t feel like they are giving – in fact, it sounds like quite the opposite occurs. Amos Bouchnik, 22 and from Kochav Hashahar, volunteers with a 12- year-old, also named Haim. “There is something very special I feel when I’m with him. It’s like giving air to my soul. If I don’t see Haim every few days, I really feel it.”

Nineteen-year-old Michal says: “People think I spend my time helping them. It’s not that way – they help me. Just being with them gives me a new perspective on my own life. I look around at society and see how easy it is to get caught up in the really shallow aspects of life that get you down. You can start thinking that minor things are the end of the world, but being with these children teaches us to start appreciating every moment.”

After the rapturous welcome, the children went their separate ways to meet with host families, eating together as a group aided by their volunteers, then sleeping and enjoying relaxation and playtime with their host families.

After getting settled in, it was soon time to prepare for Shabbat, with the children helped into smartly pressed, festive white shirts. During a fast-moving Carlebach-style service welcoming the Shabbat, the disabled and able-bodied blended together, some standing, some sitting and some being supported, creating a memorable snap- shot. Tal, 20, with a higher intellectual level than average and clearly animated by the experience of being in a real synagogue, didn’t want to part with the siddur he had been holding throughout the prayer service.

The children ate and then returned to the host families. Those who didn’t or couldn’t host had donated money, made food, brought snacks and done whatever else they could think of to make the Shabbat more enjoyable for the group.

“The experience was great for my children. Interacting with children like these with such extreme difficulties helps them to develop the love, maturity and talents they have within them,” says Rivka, a mother who host- ed four girls.

“I saw the light in the volunteers’ eyes, the boundless love they have for the children, and how focused they are to ensure they have best time that they can. These children don’t reply, but the volunteers treat them with so much love. Kindness like this is very rare to see today.

“Now, on the days after the Shabbat, everyone is still speaking about it. I think it really gave us something special in our community and made a qualitative difference in our lives as well.”

Alon Hassid, 39, is the chairman of the parents’ association at ALEH, where his seven-year-old son Or is a resident and was among the group visiting for Shabbat.

“Some of the children go home to their own families for Shabbat, but others don’t,” he says. “As parents, it gives us a really good feeling to know our children have had such a positive experience. The children inevitably come back tired – but very, very happy.”

In the late afternoon a community meal took place, with singing, a play by the local children and words of Torah from religious-Zionist leader Rabbi Haim Druckman, who heads the Or Etzion Yeshiva in the town.

Danny, 18, was sit- ting and eating with his volunteer, “Bean,” a professional dancer in another setting, as his adoptive mother for the Shabbat arrived.

“Here’s our Danny,” she said, and put her arm around him. “I really feel I’ve started to sense his personality.”

After eating, the children joined their host families at a large table . The atmosphere reflected the bond that had formed between the children and the families who had hosted them. One father, doing his best to reach out to 17-year-old Shimon with partial vision, kept trying to edge his chair closer to a stage area at the front of the hall, explaining to him what was happening.

Another parent, Shira, whispered to an ALEH volunteer: “I never knew our neighbors were so special.”

After a moving musical havdala that officially brought the Shabbat to a close, many of the children were aware that they were saying goodbye.

Following the successful Shabbat in Merkaz Shapira, other communities have approached ALEH to discuss hosting a group of its children in the future.

The spirit dropped on the bus traveling back to Jerusalem, with the mood notably quieter. However, there was no doubt that for the uncompromising volunteers of ALEH, whose hearts overflow with love for the children, this Shabbat was a victory in every sense.

Feeding tube or not, why shouldn’t Haim or any of the other ALEH children feel the warmth of a family home on a Friday night?


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