Sisters of mercy
Catholic nuns, Arab caregivers, an ultra-Orthodox teacher and volunteers from many foreign countries make up the staff of the Saint Vincent home for severely disabled children in Ein Karem - a small haven of pure humanity, where race and religion do not matter.
On a hilltop in the Ein Karem section of Jerusalem, there is a hidden kingdom of grace, kindness and mercy. Surrounded by a wall, steeped in suffering, pulsing with life, it is a small corner of pure humanity in a divisive and alienating country. Its name is Saint Vincent, and it is home to 59 children and youths with severe mental retardation. Most of the residents also have serious physical disabilities. About two-thirds are Arab, many of them of Bedouin origin. The home is run by nuns, the Daughters of Charity, with funding and oversight from the Ministry of Labor and Social Welfare.
A rare glimpse inside this place is both saddening and uplifting. Children groan and shout, make unintelligible sounds, drool. Their heads slump, their legs are strapped to iron crutches, their bodies encased in special girdles. Only a few can speak. Some are bedridden.
For some, all that can be done is to turn them over in bed, so they don't develop bedsores. When they arrive at Saint Vincent, their medical files indicate that they will not live long. Most outlive these forecasts.
They are cared for by four nuns, a social worker, about 20 paid caregivers and one nurse who is on the premises 24 hours a day. Most of the children need constant supervision to ensure that they don't choke or fall, and the state funding the institution receives covers just one caregiver for eight patients, which is not nearly enough. If it were not for the 25 volunteers from abroad, Saint Vincent would not be able to function. They are the living spirit of the place, its backbone. The youngest is 18, the eldest 75. The volunteers bring a youthful, happy spirit to the place, and that bolsters and encourages the other staff members.
This week, during a break, a group of volunteers from Germany and Austria sat around a steel table in the convent courtyard. They munched apples, read newspapers, made plans for excursions and shared experiences about the children they care for.
The work here is demanding and draining, but many of the volunteers "have caught the Saint Vincent virus," says the director of the residence, Sister Katerina Fuchs, and they return year after year. This is the seventh volunteer stint for Maria Teresa de Paneta, 62, from a small village in the Dolomites, in northern Italy. She made her first trip to Israel as a religious pilgrim at age 20, and always dreamed of returning. In 1996 she came to spend a whole year at Saint Vincent, and a year later she came back again, this time with her niece.
Every time she goes back to Italy, she has trouble falling asleep at night, thinking about the children at the home in Ein Karem - if they're tucked in, if someone is caressing them. "A child who's deaf and blind, if you stroke his leg gently and he smiles, that's enough to make me happy," she says.
"Whenever I come back here I feel like I've come home," says De Paneta, who works as a reception clerk in a hotel back in Italy. But on nearly every trip to Israel, she runs into problems trying to obtain a visa from the Interior Ministry. According to regulations established in 2005, she must wait an entire year in Italy before she is permitted to return to Israel again.
The bond that develops between the residents and the volunteers is quite intense. The volunteers are really the people closest to the damaged children. "Those who are capable of understanding sometimes get very upset when the volunteer leaves," says Janette Tasawaq, who has been Saint Vincent's social worker for the past 15 years.
"I've seen social workers and special education teachers who came here and didn't last long," says Dina Lutati, the coordinator of volunteers from the Welfare Ministry. "The volunteers, on the other hand - after a couple of months they feel like these are their children."
"12 years ago, I came here for a job interview. When I left I told myself that I would never come back. But I was here the next day at eight in the morning," says Galit Almodai, the residence's administrative director and the person who handles the dealings with government institutions outside the walls.
'They must be respected'
Fuchs, a nun for 43 years, has been running this place for a decade. She has introduced many changes, including a much greater openness to the world beyond the walls. Still, she is a deeply modest person, and while she is most gracious to visitors, she is also clearly a bit uncomfortable with the idea of exposure.
Originally from Austria, Fuchs has been tending to residents of the Middle East for 36 years, fulfilling the imperative of Saint Vincent De Paul of France, who established a holy order in the 17th century to serve the unfortunate. The order has 21,000 nuns in 94 countries, who care for the poor, lepers, AIDS patients, the frail elderly. She herself cared for orphans in Lebanon, and then for mentally retarded children in Haifa, before coming to Ein Karem 10 years ago.
Until the early 1960s, the Order of the Daughters of Charity of Saint Vincent De Paul ran a center in Jerusalem's Mamilla neighborhood for children who were born with severe mental handicaps and abandoned in hospitals or on the convent steps. Then they moved to the present building, which dates from the late 19th century and formerly served as the convent of another order. The move from the center of Jerusalem to Ein Karem on the city outskirts was difficult. Water had to be transported by mule from the well in the middle of the village, and there was no electricity.
Today, the place looks quite different. Two years ago, with a contribution from the National Insurance Institute, the building underwent a major renovation that made use of original attributes such as high ceilings and archways, and transformed it into an architectural gem, with spacious, brightly lit rooms and broad corridors.
There is a view from every room: the convent's olive groves, pine trees, the roofs of Arab houses in the village. The children's rooms are filled with stuffed animals, colorful mobiles, decorations, balloons, pictures. The curtains are cheerful-looking, the linens are brightly hued, the walls are painted in pastels. No child's bed is without colorful pillows, a doll or stuffed clown. The crib of little blind and deaf Nur also has plenty of toys. At one end of the bed of Salfiya, a 7-year-old girl with big green eyes, hangs a small mirror. The caregiver combs her hair into a long braid and turns her on her stomach so she can look in the mirror. She supports her head, strokes her back, cleans the mucus out of her nose, and the whole time Salfiya just stares into the mirror. There's no telling what she is seeing, but she is calm.
A cluster of women stands at the end of the hallway: An Arab caregiver wearing a headscarf, a nun in white and an ultra-Orthodox teacher from the special education school that operates in the convent. At their feet, a pretty 13-year-old girl is crawling on the floor, one foot in a red sock, the other in yellow, a blank expression on her face.
Janina Rechter, a 24-year-old volunteer from Germany, stands by the bed of a 22-year-old man with a large head and a withered and twisted body. She strokes his hand and wipes his mouth. He sleeps most of the time.
"I hate it when people say they're not normal," says Fuchs, who isn't one to use harsh words very often. "Our goal is to give them a normal life, as much as possible."
Once upon a time, the purpose of the home was to allow the children to die with dignity. Now that medical and technological advances have extended their lives, the aim, says Fuchs, is to provide them with the best possible quality of life and to help each child fulfill his or her inherent potential. "We don't expect them to go to high school or university, but they must be respected."
At the residence, there are classes for the children who are capable of any degree of communication. Fifteen-year-old Shatiya is being taught to say yes and no. "It's important for her to know. It will give her the ability to choose and increase her degree of independence," explains the special education teacher, an ultra-Orthodox woman who sees no contradiction between the concept of independence and the girl's severe limitations. Sometimes Shatiya responds to the teaching with a smile; other times she cries.
In another classroom, 13-year-old Imad is busy downloading a film from the "Mr. Bean" series. The computer is adapted to his motor disabilities. Imad is the most advanced child at Saint Vincent, one of two children whose retardation is classified as mild-to-medium. He speaks Hebrew, English and a little German and Italian that he learned from volunteers Lucas and Matthias and others. Despite his retardation, he shows flashes of insight. He was the first, for example, to notice Almodai's pregnancy. He stops by her office every morning as he makes his way in his wheelchair from his room to the classroom. Once in a while, he leaves the home for a visit to his father's house.
All about love
Two of the residents here are abandoned children. All the rest have families, though not all of these take much interest in them. There are some relatives who show up just once or twice a year, and one boy from an ultra-Orthodox family receives a visit from his mother only once every few years. Others come two or three times a week. One father comes three or four times a week; his daughter is confined to bed and hooked up to an oxygen tank. Several families come six times a month, and receive a special stipend from the NII because they take their children out for a trip in the car.
The children's chronological age is of no consequence. Z.P.'s daughter is 22, but she looks about 4. She was born prematurely and never really recovered. Z.P., an ultra-Orthodox woman, asked her rabbis for permission to house her daughter in the convent, since at the time there were no other institutions for children in such a condition. Even today, there are very few places that are willing and able to take in people in her daughter's state, and so she and another 22-year-old still reside at Saint Vincent, even though they are no longer children.
The children's religion and ethnic background is of no importance, either. In the past, there were more Jewish children at Saint Vincent, but over the years, other institutions such as ALEH (a network of care centers for severely disabled children) have opened, and some parents transferred their children to them.
Pnina Pinhas, the chairperson of the parents' committee, insisted that her 19-year-old daughter stay at Saint Vincent, despite pressure to move her to a new ALEH facility that opened in the Negev last year. In the end, other children were moved there, and there was still a spot for her daughter in Ein Karem. "People hear 'convent' and think they're going to convert the kids and their families," says Pinhas. "Ideas like that derive from ignorance. It's not a convent. It's a place that is run by some nuns. Its holiness comes from what they do, not from their religion."
Pinhas' daughter is a complete invalid, but she does react to her mother's voice and presence, and smiles at her. "In our misfortune there is good fortune, because there is a certain communication, and that's why it's important for me to come. I come when I want and with whom I want, and when I'm not there I'm totally relaxed and can lead a regular life. This place is all about love. The children are well-cared for, clean."
A.Z., from Abu Ghosh, has a 10-year-old daughter here. The girl does not recognize him or her mother. "It's a test from heaven for the faith of parents who receive such a daughter," he says. "Some people think it's like a birthmark you can't get rid of, some people say 'the sooner the child dies, the better' and some say that they just don't want to know anything because it's too hard for them. In our sector, the mentality is very hurtful. Families hide the fact that they have children like this, so as not to harm the siblings' chances to make a good match for marriage." Dina Lutati says there are also families from the ultra-Orthodox sector who have moved their children into Saint Vincent in order to hide them.
A.Z.'s daughter is one of the few in the home who can walk on her own. But she roams about aimlessly, and when she is at her parents' home, she's in danger of hurting herself or wandering off and getting lost. The fact that she has to be watched over at all times, along with the desire to give her four siblings a normal life, led her parents to make the painful decision to place her at Saint Vincent. They come to visit three or four times a month. Her siblings don't like to come that much, although they sometimes do so out of respect for their parents. "I don't press them. It's hard for them to see the other children here," says A.Z.
Fuchs doesn't judge anyone. She gives her all to the children. "It's not our job to decide who will live and who will die," she says in fluent Hebrew, hugging a gaunt 7-year-old girl who looks like a baby. "All life that God gave must be respected. That's why we're here, to protect their lives." And this is why she would like to have more volunteers and more caregivers. A part-time physiotherapist, for example, is not enough.
Sometimes she gets lucky and there happens to be a physiotherapist among the volunteers, but it's a random thing. She would also like to have a therapeutic swimming pool in addition to the Jacuzzi that has been installed, and other equipment that depends on donations. "Even if the children can't walk or talk or be productive, the value of their life is equal to that of mine and yours," she says. W
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