I Have Lived
I have lived the shock of first encountering a sad reality that makes us cry out: why did this have to happen to me?
I have lived the refusal that drives us to struggle, so often in vain, searching for a cure—as if we could wipe away with one stroke an ordeal tormenting us.
I have lived the loss of a normal life, of freedoms others take for granted, of friendships and peace that we thought were our right. These losses make us forget too often the real suffering of those we love.
A kind of selfishness overtakes us, attached as we are to the world around us with its promises of comfort, promises that never move us to accept sacrifice and surrender.
We ask ourselves if a life this difficult is worth living—abandoned so often by relatives, misunderstood by friends, isolated from the rest of the world.
Self-pity blinds us. We cannot see past our own advantage.
Too often we seek distractions to pull us away from our heavy responsibilities, at the expense of those who reach out searching for affection and protection.
We do not realize we receive far more than we can humanly give.
Our duties are heavy. Ours is a life of sacrifice. But look at our children smiling at us. Look at the joy that shines from their eyes. Look at the gratitude they show us.
Giuseppe Barluzzi
I Plant the Seed
Your magazine has become, little by little, more and more precious to me. I draw comfort from it, a form of solidarity, advice, real exchanges, book recommendations I've gone on to buy. Thank you! I'm sending you addresses of friends who, like me, have children with disabilities. Many of them aren't believers, or they say they've lost faith after having a son or daughter who is a bit "difficult." But I hope our magazine brings a little light into their lives. One plants the seed; then Someone else will see that it grows.
I have a nine-year-old boy with a generalized developmental delay and hyperactivity (a diagnosis that's still somewhat uncertain). I'm part of a self-help group called "Familiarizziamo" with these friends of mine, guided by a psychologist and an educator, funded by our town's social services. It's a very positive experience, focused especially on parents and their challenges. Thank you for everything.
Paola Testa Olivero
I Feel Like I'm Growing
In my life I have been to many L'Arche camps.
Where I met many people who became my friends over time.
The place changes each time, and so does who lives in our house.
There are things I can't stand, like the alarm clock, because I'm used to a different schedule.
And there are other things I'm excited to do; like the activities and singing. I like being with everyone. With some I talk, with others I don't.
Because we run out of things to say. What I don't like is when we lose touch.
And don't see each other for a long time.
I am happy if people find me likeable, even without me making ironic jokes. Compared to my brother Ernesto, I am normal. I've made great progress at work.
And with others I'm active and good company. I understand every mood.
Then I'd like to have a role—to be considered grown up, not just by age, I'm almost 37.
But especially because I could do it, to be equal to all the other guys.
In the way I act. And now I feel like I'm growing. I have the feeling I've lived every moment, keeping it only as a memory of the past. I'm sure I won't let anyone down if they trust me.
Bye from Giovanni Grossi
When He Was Home
My name is Emanuele Manfucci and I'm the brother of Daniele, a boy who is disabled.
When I'm home, or when I come back from school, he always comes to meet me and greets me every time with a very sweet smile and sending me so many little kisses.
Mom says it's because he's a boy and I'm a boy too, so for him I'm like a kind of reference point. And I think she's right.
I have to be very honest: sometimes I don't care about Daniele at all, and I need to improve a lot in this way.
The days we spend together, we're all very happy that Daniele is in the house. But not so much now: now that he's in the hospital we can hardly see him anymore; only when we visit him at Bambino Gesù outside Rome. When he's home it's as if he transmits so much joy and happiness. Lastly, I want to say that for me Daniele is like a source of love with no bottom to it.
Emanuele Manfucci
Our Best Calling Card
Not long after I became a parish priest, I felt the need for our parish to offer small but concrete signs of love to the neighborhood where we lived. It was clear to me even then that proclaiming the Gospel needs to be accompanied by concrete and visible acts of love—acts that would both guarantee our credibility and highlight the consequences of the liberation that Jesus Christ sets in motion.
I sensed that the neighborhood held great potential for cooperation. It only needed to be awakened, encouraged, and guided in the right direction.
I turned to a group of young women who had some time available and abundant goodwill.
We looked around together and realized that many people struggling with mental health problems—both psychiatric and neurological—were living rather isolated in their homes, with no stimulation or opportunities, with no understanding or support for their families. We thought we might try to do something in this area. We began with two or three cases, and in a relatively short time dozens of friends came forward. They found in our parish a point of reference and welcome.
The parish community responded beautifully. Little by little, about eighty people joined our small starting group, creating a regular and permanent activity.
Now the group gathers three afternoons a week, plus several full weekends throughout the year. The parish sees this as one of the greatest gifts the Lord has given us—because it has certainly helped us grow in our capacity to love and in discovering unsuspected riches scattered by the Lord even where we would never have thought to find them.
The activity has been going on now for about fifteen years. We've developed a basic structure of coordination, both practical and functional. In our small way, we've gained enough experience to share knowledge and methods among ourselves. We don't miss opportunities to seek feedback and stimulus from outside experts.
Our programs are never improvised or banal. We always think them through with specific goals in mind—goals that involve all our friends and allow each to contribute according to their gifts.
This activity takes place in the brightest, most spacious, and most luminous part of our parish building. It has become our best calling card because it sits right at the center of parish life—connected to the offices, the sacristy, the church itself, and the youth center.
For people in the neighborhood, the image of the parish is now inseparable from the friends they know they'll find here in the afternoons. Through them, our parish shows itself as the house of God, where all his children, by encountering Him and encountering one another, can begin to find themselves.
Don Romano Rossi, Rome, Parish of N.S. di Coromoto
We take this opportunity to offer our most sincere good wishes to Don Romano, recently appointed Bishop of the Diocese of Civitacastellana, with the hope that he will continue to reach out to the smallest among us in the name of Jesus.
The Forty-Year War
I am one of the oldest readers of Ombre e Luci—I've been reading since 1983. So I've had to think back on the dates: I am now eighty-one years old (I'll turn eighty-two in two months). My husband is two years older (we've been married since 1951). Our only daughter Laura—severely brain-injured from birth—is now a mischievous forty-eight-year-old. From these numbers, you can understand everything.
We come from the dark years, the shadowy years, the years of "shadows." I would only hear: "Don't cry, madam. Your daughter won't live long. At most she'll reach twelve or fifteen. Don't ruin your life or your husband's. Put her in this place, put her in that place." My husband and I would go silently to visit these places we'd been told about. We'd come home devastated. I thought: "Of course they all die young."
Years passed, each one harder than the last. I met other parents, increasingly alone and desperate. There was great ignorance all around: people would shrink back when they saw wheelchairs with our children pass, afraid of catching infectious diseases.
In the sixties, finally, a small group of determined mothers came together. In 1979 we officially founded our association, the Union of Handicapped Families.
It was a long war—what should we call it? The forty-year war? In the decades since, we've fought many battles, battles large enough to allow us to live the modest life that all families with disabled children now live. An old Tuscan proverb says: "with little you survive; with nothing you perish." And so we came to meet you, dear Mariangela, and the great Jean Vanier, and your intelligent kindness. I loved you immediately because I felt you were family—older family, more open and wiser than us.
Thank you, dearest friends, for what you are, for the understanding, the comfort, and the desire to help us that you've always shown. You have truly been a light. For so many years you've helped us, and you continue to help all of us in our solitude, through your small beloved magazine. With your sensitivity, you live our problems as we parents live them. You understand us, without pity, with sorrow, but also highlighting the positive sides. In a society that grows more distracted, harder, and more difficult every day, our children are a school of tenderness, of love, of commitment to life. And you have always understood this well.
Cecilia Cattaneo
Finding the Right Key
I'm Maria Novella. I'm twenty-nine years old and I have a twin sister, Flaminia, who has cerebral palsy. We've been part of L'Arche for twenty-five years—a whole life!
Flaminia doesn't speak, but her glances say more than a thousand words. I melt when she looks at me sweetly, and I panic when she gives me a sidelong glance. I start wondering if I've done something that bothered her or if it's just one of her difficult days.
Like all twins, we have a very close bond. When I was small, I didn't understand it so well. If someone asked me, "Are you like other twins who understand each other instantly?" I'd always say yes, then I'd think to myself: "How can I understand her? She doesn't speak!"
As I grew up, I learned that words aren't necessary with her. Only glances, embraces, and through these I can make her feel what I'm feeling. We have another sister, Maria Giulia, eight years younger than us, who made our relationship lighter and more spontaneous. She teases Flaminia, imitates her tenderly—something I've never been able to do.
There have been times in our lives when Flaminia and I have been apart: when I went to university in Arezzo, when I lived in Spain for a year. On those occasions, we didn't suffer from the separation because they were difficult times for me, and I couldn't really be with Flaminia anyway. I think she experienced those moments as a temporary separation because she knew, and I knew, that I would eventually come home and we'd be together. Our is a very close family. We've always been together. I've always lived at home, and for Flaminia that was a certainty.
This past July I married Angelo, who is also part of L'Arche. Flaminia has a bond with him made of glances and caresses—and I'm not part of it. During the wedding preparations, I kept wondering how to involve her. It worried me greatly. But gradually I figured it out.
When I talked about the wedding, I tried to do it with her present or when Angelo came to the house. We'd spend time together so she could understand that we would become a family. Then came the wedding day—the most beautiful day but also the day of real separation from Flaminia. Before our friends Silvia and Giulia came to pick her up to spend the day with her, I kept asking myself how I'd manage without her—without seeing her when I woke up, without that moment when she looks at you, smiles, and stretches, and especially without being able to feel her and let her feel me. I thought those feelings would only come from me, not from her. But I was wrong. When we came back from our honeymoon, Flaminia didn't want to see me. She turned me away. I was hurt, honestly. But at the same time I found peace. Through her coldness, I understood what she was feeling and how deep our bond really is.
That's when Angelo came to my aid. He suggested I take her home for a weekend. It was wonderful. Flaminia stayed close to me, caressed me, nestled against me. And that evening—all three of us on the sofa in front of the television, with her snuggled a little against me and a little against Angelo. Now when I visit her at home, or when she comes to me, we lie on the bed and look at each other for a long time. It's beautiful. That's how we have our conversations.
As always, you have to find the right key to reach Flaminia's heart. I'll admit I've had moments of discouragement too, moments I only became aware of when my life changed. But I think now we're both aware that our relationship has changed only in form, not in substance. I'm very happy when I see her look at Angelo with tenderness. I'm sure she doesn't see him as an obstacle to her life but as someone who loves her, someone capable of giving her the warmth and affection she's always been so sensitive to.
Maria Novella
Just She and I
I'm Emanuela's mother. I accepted your invitation to put on paper what I have lived and continue to live.
I'll tell you right away: my child is everything to me. She is my light, my life. As for disappointment—no, I'm not disappointed in her at all. Why would I be? She doesn't see. She doesn't speak. She doesn't walk. And what does all that mean? There are people who see and speak and walk, and then—then they have no real life. They're empty, barren, dead inside, despite appearing normal.
My daughter is alive. She is full of life. Her smiles, her great expression of happiness and sweetness radiate from every pore of the skin that covers that small body. I never asked myself whether I could love my daughter for what I wanted her to be. I love her for who she is.
I found myself alone with her. Her father left, and there were just the two of us. Fine. But it didn't last long. Then the L'Arche friends arrived.
Note: friends and relatives disappeared. I don't care. I have her—true life—who teaches us to live in this world full of selfishness, fear, and cowardice. And she, having nothing, has everything and gives everything.
Someone might tell me this is purely philosophical, that my response as a mother to this daughter is just a way to lighten a very heavy situation, outside the bounds of normal life. Well, I tell you no. I love my disabled daughter as dearly as the most precious child in the world.
Grazia (Testimony given at the national L'Arche formation meeting in Santa Severa, Rome, November 2007)
Putting Myself at Stake
My experience with the community has changed my life profoundly.
Before I met L'Arche, I was a woman who seemed like many others. But I felt incomplete, in some ways insecure. I sensed the need to draw out a part of me that had long been hidden in the dark and wanted to emerge. This had roots in my childhood. My mother died when I was seven, so from that age on I took on responsibilities that made me grow up too fast, without meaning to. Yet I always felt the presence of Jesus carrying me in his arms.
As I grew and continued to feel this insecurity, I asked the Lord for one thing: the courage to change. And the beautiful part was this: he didn't let me change alone. Instead, he made sure I was accompanied on this journey by other people who could draw out the truest, purest, and most spontaneous part of me. It happened, of course, at an unexpected moment—when I listened to a Mass animated by the young people and friends of the community I now belong to. Their spontaneity struck me immediately. In fact, from the very beginning, they welcomed me for who I was—with my insecurity, my need for affection, my fragility.
Finally I had managed to put myself at stake, to come out of my shell. And now, after I've grown, the Lord has called me to take responsibility for the community for a second time. How could I say no to Him and to my community, which had given me so much? L'Arche is a wonderful experience. It's a pity there aren't words capable of describing it fully.
Enza Catalano
Meeting in a We and Being Infected
I've worked as an educator for more than eleven years, and I'm in my eighth year at a young day program that welcomes adolescents with severe disabilities. That age when each of us, everyone, lays the foundation for being a man or being a woman. That age when the question "who am I?" takes shape. It's not easy to express, to tell what I've given as an educator, what I've been able to give to at least some of the young people we've welcomed. It would be a story that would necessarily have to pass through a daily life that becomes closeness, through a relationship built day by day with patience, with the desire to know each other, to understand each other, to look at desire, at need. I could tell about moments, glances, smiles, tears, cries. I could tell about times and spaces of meeting, about experiences. But all of it would pass through that imperceptible and inexplicable moment that can only be understood in its mystery and deepest beauty in a relationship—in an I that meets a Thou.
I can tell you about a desire, a search, in continuous work on myself, that gives meaning to my being an educator. The desire to see the eyes of those I meet every day shine. To see a face relax into a smile. To see a body loosen from its tensions. To hear a word, a cry, a sound. To sense the desire and wish to be recognized, looked at, understood, grasped, encouraged. To feel that the young person I've met finds his own way of expressing himself, his own way of relating and communicating that is unique and of immense beauty and value.
So I could tell you about glances, faces, gestures, exchanges, in which in the miracle of meeting two individuals can meet in a we and be infected.
This is my desire, my search. This is the story of a meeting. Its meaning.
It's within this frame that my profession is spent in everything I can bring to bear with skill, with effort, with strain—in work that cannot be mine alone but that of a team, made of exchange, of analysis, of dialogue, of attention, of listening to every small and sometimes not immediately recognizable desire for expression of those before me. From here comes the thought and beginning of specific spaces, of workshops, of activities that must start from what each person is and expresses. From here comes putting all the knowledge and skills that I've acquired over time at the service of relaxation, expression, the desire to communicate and to belong. All of this can become a path to give shape to that "who am I," to improve the quality of belonging so that each person can increasingly express themselves, enjoy themselves, and have some say in some aspects of their own life.
This outlook of mine certainly has its roots in my belonging to L'Arche. But over the years I've had the chance to discover that people can come from very different paths while sharing the same desire to truly meet the person in his deepest mystery.
Giovanni Vergani
The Only Magazine
I am Sister Daniela Maria. For nineteen years I have lived in the Franciscan hermitage at Campello sul Clitunno. We remain two, and recently a new sister has joined us, beginning her journey with us.
We've received Ombre e Luci since 1984, and over the years it's the only magazine we've chosen to keep. Our charism consists of intercessory prayer dedicated to those who suffer most. We also welcome those who wish to spend time in tranquility to reflect and pray with us. Some moments of our communal life are dedicated to reading articles we carefully select based on the needs of our guests. I remember in particular the issue dedicated to autism, which was helpful to a woman who had a son with that condition.
For ten years, the cooperative "Il Cerchio" from Spoleto has visited us once a year. The young people with disabilities from the cooperative are now our friends and willingly help with maintenance work, like lawn care—a chance to spend a day together.
From Four to Five
Picture this: I'm reading on the sofa, enjoying a peaceful moment in my day. All four children are at school or in preschool, and for half an hour I'm looking forward to enjoying my book in peace. The phone rings (which I hate when I'm trying to read), and during the conversation that follows, I discover that we might soon—very soon—become parents again. Lucky for me that peaceful moments like this don't come along very often.
Because it's true that a week before, we'd told the coordinator of the group home we work with through our Scout troop that if the little boy Andrea ever needed a family, we'd step forward. We certainly didn't expect it to happen so quickly.
Life sometimes offers us strange coincidences. You're there with your Girl Scout troop doing service at a group home for disabled children. A new boy arrives. You talk about him at home. You say "why not?" And two months later, instead of four children in the house, there are five. Beautiful coincidences, I must say. Andrea was a very small child then, with a diagnosis still being worked out and a medical file full of concerning information. The court was looking for a large family to help him cope with the consequences of a birth that had come too early and was decidedly complicated. I remember one particular line from that famous phone call: "We discovered today that he's probably hemiplegic." And I said: "But will he walk? We have a house full of stairs." (A comment that really meant: "Wait a minute, maybe we should think about this more carefully.") "I hope so. Anyway, don't worry. Even if he doesn't walk until he's ten, you can carry him in your arms." Right. That's not much to worry about!
It wasn't a decision made on the spot. We went back and forth between yes and no quite a bit in the days that followed. There's always a vast ocean between saying and doing, and it's right that there should be. We knew the world of disability only as volunteers. Choosing to bring the "problem" into our home wasn't immediate, and at times it wasn't simple either. But Andrea was first and foremost a child who needed a family. And we were a family with space, affection, and enough energy to care for him. So why not say yes?
Andrea is now two and a half years old, and he's a truly beautiful child. Since June he's learned to walk, and he's increasingly able to move and use his hand better too. It's a joy to watch him grow and win a little more independence each day.
In becoming parents of a disabled child, there's something extraordinary about our situation. Not in the way people usually mean it—often with a certain awkwardness, they express their admiration when they learn our story. But because in Andrea's arrival we were granted a special privilege: we were allowed to choose this situation, a privilege a natural parent is never given. I think about it often. In this sense, our road began less uphill.
The most beautiful reward of this year and a half? Andrea's peace.
The biggest change in terms of work? Don't laugh: the laundry. As with the arrival of any other child—and I don't understand why—the laundry hasn't increased proportionally. It's simply doubled. The mysteries of household math.
The relationship with his siblings? Ilaria, Lela, Giacomo, and Adele are his biggest fans and partners in crime. They welcomed him. That's it. He's their little brother. When Andrea learns to do something new, they celebrate. When he won't let them play with their big-kid toys, they try to pawn him off on me. When I need help, they give it gladly. They're happy he came too.
Luisa Dinale
"Since Andrea arrived, I've had some wonderful moments. But the ones that make me laugh the most are when elderly ladies stop me, Mom, and Andrea and say: 'What a beautiful child! He looks just like his brother. They look so much alike.' And meanwhile I crack up behind their backs."
Giacomo, 10 years old
"What I remember with the most joy is when Andrea wanted to play ball with me. Instead of tugging on my pants like he usually does, he tried to say my name. He kept trying, and he said 'ie-ia' (Lela). It really moved me."
Emanuela, 12 years old
Climb Together
There are some things I really enjoy and that make me feel truly well. For example, I like spending time with my friends, including those who are disabled. And I like to climb.
But these two parts of my life have always been somehow incompatible. At least until last October 20th.
Rock & Walls—one of Rome's most well-known climbing gyms, where top athletes work and train—in collaboration with the Italian Paralympic Committee, "the Boys of Opera Sante De Sanctis," and with support from Rome's city government, organized CLIMB TOGETHER. It was the first edition of an event where young people with intellectual and relational disabilities competed alongside more experienced climbers on boulder routes (unroped climbing on short, mostly overhanging walls with crash pads for falls).
The event took place thanks to the hospitality of Movimento Verticale, the sports association that welcomed us in the new facility at Madonnetta Park in the Axa section of Acilia, Rome.
An unmissable and well-executed opportunity. A day in the open air that I'll remember for a long time. Not only for the weather—a cool breeze kept the sky clear of clouds. Not only for the philosophy—nicely symbolized in the CLIMB TOGETHER logo.
I'll remember this day for how it was conceived and managed.
First of all, it was a real climbing competition, with the same rules as official competitions. There were route setters. There were referees—A-list climbers. There were scorecards, qualifying rounds, and finals. There were medals and T-shirts for all participants, trophies and prizes for the top qualifiers.
But it was a different kind of competition because this time the athletes didn't compete individually. Instead, teams of two competed. The pairs were drawn by lot from among the regular gym members and the guests with disabilities who came to see us.
Some of these guests had never climbed before. But all of them play sports regularly.
I was particularly struck by the intelligent attention of the organizers and the competitive spirit of our guests. The organizers understood perfectly when it was right to bend the rules so as not to spoil the joy of the participants. The guests gave it their all to overcome the increasing difficulty of the routes. So it happened that, given the tiny differences in scores in the preliminary rounds, the final podium grew from the usual three places to the innovative four. So it happened that our friends insisted on repeating the same route over and over within the time limit, to conquer the hardest passage, to nail that elusive hold.
Beautiful was the teamwork. Good coordination developed quickly within the pairs. There were technical tips alongside passionate shouting. There was support that bent the rules a bit (hats off to the referees for turning a blind eye) and laughter together and comfort after a fall.
I had fun watching—yet again—our friends with a few more challenges show they had no trouble competing in a sport that's generally considered "difficult and dangerous." Not at all. They were there, like us, trying and trying again. What a light in their eyes when they closed the route! It was somehow emblematic of the difficulties they face in life.
And with their enthusiasm, they pulled along relatives, friends, and caregivers who—after the competition was over—also wanted to try climbing.
Yes, it was a really beautiful day. Not a competition "for." Not a competition "of." My first climbing competition was a competition "with."
Nanni