What Faith and Light Means to Me
I have read several times Olga Burrows Gammarelli's article "Friends at Faith and Light" (Ombre e Luci no. 62), and after thinking long about it, I want to share some reflections of my own.
I am the mother of Flaminia, who has cerebral palsy and is now twenty years old. She joined Faith and Light when she was four.
Let me start by saying I disagree with the neat categories drawn in that article. I understand why calling young people "friends" (rather than "patients," which strikes me as much sadder) might seem odd. But the other two terms—PARENTS and FRIENDS—mean to me exactly what they mean in ordinary daily life. At Faith and Light, they mean the same thing.
For me, I am simply a PARENT. I don't think of myself as belonging to some special category just because I have a disabled daughter. The only thing that perhaps sets us apart is that we are very sensitive, always alert to every nuance. We tend to believe our wounds run deeper than others', and that we deserve extra attention as a result. We should remember instead that everyone carries a cross. Ours is simply more visible.
The FRIENDS, in my view, are not young people who come to help me and befriend my family. They are FLAMINIA'S FRIENDS—people who, by choice and from their own deep need, want to be her friends. It follows naturally that they are close to my whole family.
Many people have criticized this understanding of Faith and Light, saying it contradicts one of the community's core principles: to support families by involving them completely. But I ask you: have you ever considered the immense joy a family feels when their disabled child—so often mistreated by society and institutions, forgotten or pushed away by those forced to know him or her (schoolmates, public workers)—is surrounded by FRIENDS who cherish him, who indulge him with affection, who try to meet him where he is? When I think of Flaminia with her FRIENDS, I see her exactly as I see her non-disabled sisters. It is a beautiful, deeply satisfying feeling. In my view, friendship between our young people and FRIENDS should not depend on how severe the disability is. That would only make the differences more obvious, not help us look past them.
I reject entirely the word "assistance" applied to Faith and Light. Assistance is what I demand from the State—they are obliged by law to provide it. From Flaminia's FRIENDS, I ask only affection and respect.
Faith and Light has been part of our lives for sixteen years now. We have had beautiful moments and some bitter ones too. We have watched FRIENDS disappear—people whose dedication to all our young people we once admired and valued. Though I respect everyone's choices, the sadness I feel when a FRIEND walks away is the same sadness I feel when one of my other daughters is betrayed or misunderstood by her friends.
If I have one criticism of some FRIENDS: they often approach our young people with such intensity that they eventually exhaust themselves and withdraw. If they truly thought of them as friends, they could sustain a more balanced relationship and spare us heartbreak. A phone call now and then, a visit for ice cream together, a short walk—these matter far more than seeing each other constantly and then never again.
This would also allow FRIENDS to care for all our young people without exclusive attachments that breed misunderstanding when one seems to get more attention than others.
We PARENTS also bear some responsibility for what FRIENDS become. It is discouraging to suggest to young people who approach our children with enthusiasm and some fear that they must "work" in a certain way. We should provide all the practical advice and help they need—our children are fragile and require special care. But we must let FRIENDS and our young people discover how to build their friendship without our interference, trusting that the Lord will light their way.
Paola P. Ceccarini
In Memory of Mirella
Mirella suffered from progressive blindness. She was losing her sight slowly, inevitably. She had a wonderful memory, and whenever she came to Faith and Light gatherings at Abano—at Christmas, Easter, at the celebration for mothers—she always knew her beautiful poem by heart.
She was quiet in her way. Her mother always brought her, and the two were inseparable. Mirella's father had died long ago. If her mother said something, it was gospel truth, because her mother had said it.
At the last gathering she attended, Mirella had cried a little because she was going to the hospital for tests. Then she left peacefully, saying goodbye to everyone: "I bless you all!" I was struck by that greeting. Only later did I understand—that was the last time we would see her. It was her farewell to all of us. Perhaps those words carried a wisdom not of this world.
Then Mirella went into the hospital, and within months an unrelenting illness consumed her slowly, like a grain of wheat that dies to bear fruit.
When I think of Mirella, I still hear those words: "I bless you all!" They are words spoken with a prophetic sense, words we don't understand at first but come to understand later, when perhaps the person is no longer with us.
God chose what is foolish in the world to shame the wise. God chose what is weak in the world to shame the strong (1 Cor. 1:27).
Mirella "lived to bring joy," Don Antonio said in the homily, and I believe Mirella was one of those "special gifts" the Lord gave us.
My wishes to all.
Paola Spadati
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A Brother Speaks
He wakes at seven in the morning. My mother dresses him quickly. He walks fast to Piazza Verbano, where the "Anni Verdi" bus picks him up and takes him to school—a center for autism education. When he arrives, he goes to the room where they teach him many things: how to set a table, clear it, use a computer, ride horses, and more.
During the year he did well there with the others. It helped him grow. Though he is not typical, it is not his fault. They taught him how to behave in different situations, or at least some of how.
I see him when he comes home at four fifteen. He turns on the stereo and sings loudly. I hear it from the next room.
He writes names and surnames of people he knows on sheets of paper, with birthdays underneath. Or he does crossword puzzles. He shuts himself in his room, and when I want to go in, he slams the door in my face. But if I joke with him, we get along fine because I don't feel completely grown up either. I always want to laugh, and I can't bear people who judge me. Everyone has their own way, and I respect what everyone says, even if it hurts sometimes to admit others are right. On the other hand, I've spent my whole life wrong—closing myself off.
Sometimes I ask myself: why must life be so cruel? It is not easy to change a boy like him. You have to fight so that as he grows, he reaches some inner maturity. Sometimes I pray that God will help both me and my brother, and the rest of my family too.
The important thing is to accept yourself for who you are and keep going until the moment comes when everything falls into place.
Giovanni Grossi - Faith and Light Group "Archipelago"