My life at the "Carro" began gradually, in small steps, so I could savor the taste of community living. First came weekend work visits now and then, to help prepare the old farmhouse for its first residents. Then one day a week for deep cleaning or preparing a big meal, once the house was up and running. Then a three-month stay. Finally, the choice to make this shared life my everyday existence.
Now I'm here, at last in a new house—spacious, long-awaited, desired and dreamed of—to welcome so many more "young people" and friends. I live this demanding adventure with Matteo and our three daughters: Maria (9), Francesca (6), and Anna (1).
Balancing the girls' needs with the demands of daily life—caring for resident young people and all the others involved in this reality—isn't simple. It's a complicated puzzle, typical in its own way of any large family. We try not to let either side overwhelm the other. It's delicate work: managing everyone's schedule with respect, preparing five different menus at each meal, arranging times for celebration and work, meetings and games and homework, handling the small jealousies and misunderstandings and tantrums that come every day. I try to solve these small daily difficulties by staying close to each person—listening to those who don't speak, quieting those who talk too much, and paying careful attention to what isn't said aloud: just a look, a small cry, a pouting face.
I watch. That's my approach. Not only what happens to my daughters, but to all the young people here. I make sure, for instance, that jumping and loud games don't disturb Alberto (he prefers Anna's gentle touch). I notice when it's time for the family to be alone together. I think about what each person needs to live—to help us all live—in a warm, peaceful, welcoming, family home. Seeing my daughters grow up in this place of peace and solidarity brings me joy.
I try to give each person a small task, so everyone feels part of things. Stefano waters the plants and picks up Anna's toys from the floor. Carla is our "ambassador"—she comes and asks me when something's missing from the house. She and Rita clear the table together, wash and dry vegetables, and take turns helping me change Anna's diaper. Mimmo keeps us informed of the news. Francesca changes the calendar and reads the prayer. Maria writes the shopping list, and both girls, taking ideas from school, suggest activities we can do together.
From the start, a natural bond formed between our daughters and the disabled young people we welcomed. First with Maria, then with Francesca, now with Anna too. We encourage each other through hard moments—a little crisis, a bad grade, a bump, bitter medicine, a long drive to school. We share pleasant times every day: drawing, tending the flowers, making pizza, pushing Alberto's wheelchair, choosing hymns for Mass, performing, gathering olives, singing and dancing, keeping Anna entertained with songs and stories while I cook. Their attention to one another still moves me.
This bond becomes clear during vacations and weekends when the young people visit their families. In their own ways, the girls ask again and again where everyone went and when they're coming home—like siblings who have trouble separating and celebrate when they're reunited.
Like all mothers, I struggle to balance my work outside the home with the needs of our large and varied family. It's a difficult task, demanding endless patience and every ounce of energy I have left.
Since becoming a mother, I understand better what it means to entrust your children to someone else's care. I see the worry of those "special" mothers who don't know what the future will hold for their children without them. The thought that my effort might offer some relief, hope, and peace of mind to other mothers—that gives me the strength to go on each day.
For our family, living at the Carro is simpler than it might seem, because it evolved day by day, naturally. First came the choice to live in community. Then marriage, and making that shared life our life project as a couple. Then our daughters were born, all in a spirit of welcome and sharing.
Our small community has traveled a long road, moving slowly—like a cart that lets anyone climb on or off, makes small stops, stands still to admire the surrounding landscape. Even moving at this pace, it needs enormous strength to pull it forward. I want to share this choice with other families and see many children running through the fields and hiding behind the great oak tree.
Ivana Perri, 2005
PHOTO: Ivana in the Carro kitchen
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Getting to Know Faith and Light and Shadows and Light in France, Where They Began
A trip to Paris to see how things work at Ombres et Lumière, our "big sister"? Why not?
Of course, you have to organize things a bit and leave your husband and children behind, then convince yourself that flying is, after all, the best way to cover that distance. The language isn't a problem—Hubi speaks three languages and even has some French. We contact Anna Cece, an old Italian friend, who is wonderfully kind and offers us not just a place to stay in her lovely, welcoming house near Paris, but also a couple of really interesting meetings. Three days in Paris should be well spent—not much time for sightseeing, but plenty for meeting realities different from ours and finding occasions to compare experiences.
Faith and Light
The movement began here in France—in Italy, FAITH AND LIGHT in 1971, after a pilgrimage to Lourdes that, for the first time, brought together people with intellectual disabilities, their families, and their friends. The young community we meet on Sunday after arriving in Paris (The Sycamore) was born after the 2001 Lourdes pilgrimage and brings together young families with disabled children up to 14 years old. Italy has no communities like this: the families who started when their children were small have aged without any equivalent renewal.
It becomes difficult to persuade a young family with a small disabled child that they'll have fun or find comfort in their suffering without others in the same situation.
The gathering takes place in a welcoming room at a private school with a kitchen attached; the children can play in the courtyard and Mass is said in a small chapel (it seems they're not well received in the parish). There are about thirty people—more than half are families, then friends with children in tow, and two young women. An elderly priest, now retired from his major duties, is very affectionate and close to the families. He tells us he's brought several community children—even two quite severely disabled—to the sacraments, and surprises us by saying he doesn't support integrated catechism. His Mass is much simplified and done in a way that engages the children well, with many symbols and gestures. The most beautiful thing: seeing a couple of parents without their disabled child go out with the scouts—come back and actively participate in the community day to organize the next gathering, which would be held as a retreat at a convent of cloistered nuns. The saddest thing: hearing how much society has cast aside families with disabled children because they chose to bring a child with problems into the world rather than abort him.
The Lejeune Foundation
The foundation created in the name of the scientist who first recognized the genetic cause of Trisomy 21—better known as Down syndrome—is working to change this deeply rooted attitude in French society. Its goal was to understand what causes the defective translocation of chromosome 21 and try to treat it. Unfortunately, he died in 1994, but his energetic wife and some family members have continued working toward this goal. The Foundation works on the research front, funding researchers investigating genetic diseases that cause intellectual disability, and on the care and treatment front with a specialized polyclinic that can follow pathologies caused by these same syndromes (more than three thousand cases a year). It promotes events to raise funds and publicize its work, because the state doesn't fund this kind of research. Instead, it encourages—when a genetic disease or other problems are diagnosed—the termination of pregnancy (a proposed law would permit the elimination of a sick child up to 24 hours after birth).
Le Tremplin
A young man with Trisomy 21 works at the administrative offices of the Foundation. He trained for his job at a small, unique center called Le Tremplin (The Springboard). A full-time director/operator/companion/jack-of-all-trades and another part-time operator, along with some volunteers, instruct about fifteen mildly disabled young people in an apartment in Paris in activities like computer work, cooking, and other manual skills that might help them enter the job market. Once a week, they run a small restaurant with a fixed menu where, by reservation, you can have a good meal entirely prepared and served by the young people. The same young people are supported during internships that might lead to employment, since medium and large companies must by law employ a certain percentage of disabled workers. Some of the young people won't easily find work—even in the protected sector—and in this small center they have a kind of alternative to a specialized institution.
OCH (Christian Office for People with Disabilities)
Some of the center's initiatives found additional funding through the OCH (www.och.fr). After long experience meeting with families suffering through disability, Marie Hélène Mathieu decided to find a way to ease that suffering and founded the OCH. Its mission: welcome, give hope, support these families.
The OCH office is in a beautiful three-story period building overlooking the Champ de Mars (where the Eiffel Tower is), squeezed between two twelve-story buildings.
On the first floor is the Permanent Welcome center (another office is in Lourdes, with two permanent staff and a hundred volunteers, never enough). Here, operators offer support, practical information, publications to anyone in difficulty. The goal—pursued through the magazine Ombres et Lumière, through radio and television appearances—is to share and exchange experiences, to shed light and give hope to those living with the suffering of intellectual disability, reaching as many people as possible.
To reach those still alone, and those with no direct experience of disability, conferences are organized featuring Jean Vanier as well as parents, siblings, community workers, and others engaged in this field. For the OCH, this expresses the Christian way of being and responding to suffering by appealing to communion and closeness.
Finally, the OCH supports—through distributing funds from private donations—initiatives where people share life with disabled individuals, emergency interventions (building ramps, removing architectural barriers, providing aids), and grants for the birth of a new "life community."
As a legally recognized association, also recognized by the Church, it's often called upon to organize special events (for example, for World Youth Day, for accompanying disabled young people).
Once a month all the components of the OCH (Welcome centers in Lourdes and Paris, Ombres et Lumière, Faith and Light international, the administrative staff—twenty employees in all, some regular volunteers and others ad hoc) meet for a full assembly.
Each component updates the others on progress; common work goals are identified and guests representing outside realities are met to explore themes and begin dialogue (that weekend, we from Shadows and Light were the special guests!).
Ombres et Lumière
The magazine, our "big sister," began publication in 1968 under the direction of Marie Hélène Mathieu, now under Marie Vincente Puiseux. A much more complex reality than ours, more organized, with more staff and greater resources.
At an expanded editorial meeting, we discuss the idea of putting out a joint issue, which gives us a chance to spend an afternoon inside their working process. The magazine has about 12,000 subscribers in France (we feel very small with our 1,500). But other proportions are more or less similar when compared. Ombres et Lumière has a specific role in the OCH: it's the voice of the organization's mission to the outside world. That's what's most enviable: being able to work knowing you're part of a network of people with a shared purpose.
Cristina Tersigni, 2005