When we sent out that questionnaire, we weren't after statistics. We wanted to hear from the mothers who read Ombre e Luci—to know something of their families, their thoughts, their hearts. Not many responded, and that's a pity. But we're grateful for what some of you (and one father) chose to share: the loneliness or comfort of those around you, your desires and fears, anger, resignation, or a sense of peace.
A few patterns emerge. The mothers who answered were mostly over fifty. More than half came from the north—why the silence from the center and south? Most of their disabled children still live at home, attending school, day centers, or workshops. Only one works.
Many handle their child's care alone or with their husband's help. Many fathers, sadly, cannot help much because of their own health. It makes you wonder: are mothers simply stronger? Or did they not tell us how they really are?
Almost all the responses show acceptance and peace toward their child's disability. But the future weighs differently. There's pessimism, uncertainty, worry. When it comes to planning for "after us," we noticed something striking: mothers in the north speak of residential homes and family structures; mothers in the south think almost entirely within family—brothers, caregivers. Is this a cultural difference? Or does the south simply lack facilities that inspire trust?
The most moving part was the open-ended responses—where each person could write freely. We found phrases of real power and originality, rich with humanity. (A few appear in the box on the next page.) Here is someone authentic, unguarded, full of love.
"My husband and I have health problems, but we are brave and we fight on."
Beneath the suffering, sometimes the anger, we heard voices of hope. Trust in others. Above all, love—for family, for the child who struggles most.
These mothers are not alone with their disabled child anymore. Yet the responses show something unchanged: a bond between mother and child that runs deeper than anything else. The mother is the center of government, the minister of all affairs.
When asked about their greatest desire, nearly every mother pointed to her disabled child. What makes a mother happy? The answer was almost always tied to the child's well-being. It's clear: the deepest wish of every mother here is that her beloved child be well now and in the future, that he smile, that there be real exchange between them.
And underneath it all—in every answer—lies something simple and absolute. Love. Love for the child, for the family. The desire to love and be loved. The hope that these children will be loved even after we are gone.
Rita Massi
Dear Mariangela
First, thank you for being with us all these years with "your" magazine. Don't think you could have done more or done it better. I've always loved it for how easy it is to read, for the real affection you bring to our biggest struggles, for your honest care in sharing them with us.
I felt your fingerprints on every page—a sensitive, intelligent mother trying to give us courage, hope, the certainty that we are not alone.
Every time Ombre e Luci arrived, it was like a small feast. I'd find a moment to read it straight through as soon as I could. I hope to read your words for many years to come.
A warm embrace, and I hope you have a peaceful summer.
Elisa Sturlese
With Real Pleasure
With real pleasure, my husband and I answered the magazine's questionnaire. I found it meaningful. It stirs up all the feelings, all the thoughts and hopes that a family has when one of your children carries a grave disability—especially motor and neurological. I should say: I read Ombre e Luci. It's the only magazine that truly gives me courage to keep going. We have a daughter with cerebral palsy. She's turning forty-three. At nine months old, she had convulsions—they came often until she was ten, when the doctors stopped them. She still has seizures now, but rarely. For forty-three years we've cared for her without pause. We've given her everything: medical care, behavioral support, physical help. She doesn't live a normal life. Often she won't eat at the table with us or leave the house. She spends her days talking in phrases that don't quite mean anything. She holds a stuffed animal in her hand all day and listens to CDs. Because she won't go out, I go to Fede e Luce gatherings alone. For a few years now, a helper has come—she takes our daughter to her house for about six hours. That gives us some peace and freedom.
"It helps me to get out, see friends, read, be in the fresh air, and of course go to the Fede e Luce retreats."
My answers may sound pessimistic. That's because of what I've seen in various institutions and associations over the years. But I have to say: the one place that really works well here in Sicily is the Oasis of S.S. Maria di Troina, in Enna. In forty-three years, our daughter has stayed there maybe three times, for six-day periods and checkups. Her name is Geppuccia, but her body is not a woman's—she looks like a girl of ten or twelve. Only we have the patience her needs require. When we must be away for days, this helper stays with her, day and night.
Now that we're aging, we're thinking about the future through a will we'll have drawn up by a notary.
We embrace everyone at the magazine, and send warm regards to Mariangela Bertolini.
Maria Antonia and Mimmo Sinacri
Dearest Friends at the Magazine
I've wanted to write to you for a long time. This questionnaire gave me the courage to step out of my shyness and join in.
Ombre e Luci is a breath of peace for me. I believe whoever writes in it must be a good person, with much to teach me and offer me.
I want to embrace you all for the support you give. I'm the mother of Francesco, who is fifteen now.
"I live day by day. Yesterday was hard, today is good—thank God!"
When he was six, we learned he had Duchenne muscular dystrophy. Suddenly his movement struggles made sense—all our worries, our questions, our confusion fell into place.
The news shocked us. I lost my voice for days. I couldn't speak. But inside, I felt a Presence—warm, silent, peaceful—whispering: "Don't be afraid. Trust me. I am with you, with Francesco, with all of you. I won't leave you alone."
A few days later, my voice came back. So did the tears I couldn't stop. I felt Jesus and his mother watching me with a gentle smile. I chose to trust.
Now my husband, Francesco, his brothers, and I walk forward—slowly, but we walk. Every day we try to face his falls with calm resolve, his disappointments, all he has given up. We do what we can with what we have. We look for alternatives that might give him back some of what he's lost: his longing to run, to draw, to build, to ride a bike, a motorcycle.
It grieves me that his disability takes these things from him. I see the sadness in his eyes sometimes, in his words. All I can do is stay close, listen, help him think for himself, encourage him to build friendships so he doesn't withdraw, and nurture whatever creativity he has—so he keeps dreaming. One puzzle piece each day.
Thank you, all of you, for listening.
S.B.
I'm Not Young Anymore Either
Dear Mariangela, I understand completely what you mean about age. I'm eighty-five now, and I had to leave my beloved association, the U.F.H.A., where I fought a long war against a government that was, frankly, indifferent and unfeeling. Physically I'm blocked now—severe arthritis in my knees, a hundred other problems—but still less blocked than my Laura. Now she can barely, with two strong people holding her up, sit herself in a wheelchair. She's fifty-three. Life changes when you're old. Your way of seeing things changes. The money runs out. Thank you, dear Mariangela, for your small magazine. For so many years it has helped me live. Laura was born in 1951 in the middle of a thousand complications—medical and social—that thankfully don't exist anymore.
"With God's help, I found my way out of the shell where everything seemed only dark. Fede e Luce especially has let me live this life with more ease."
In those early years, famous doctors would tell me: "Don't cry, madam. This poor child won't live long. She'll make it to fifteen or sixteen at most." That was no comfort to us parents. One doctor actually told me—I remember every word—"Why do you insist on keeping her at home? You and your husband are a handsome couple. You're ruining your lives. Put her away at the Cottolengo." I answered him badly, furious. Of course no one would say such things today. But even now, in 2012, our esteemed Professor Monti and the equally estimable Deputy Fornero don't seem to understand: when you cut funds to local governments, the first things that disappear are the meager social programs for the disabled and the elderly. And the situation for Italian families right now is so hard that having an elderly or handicapped person at home becomes unbearable.
Anyway, dear Mariangela, so as not to waste our lives, I've tried to gather the most important pages from the enormous material I've collected over the years. Pages that tell the history of my small association—and so, the history of Italian families with gravely disabled children through the decades: our requests, our protests, what the state did, the laws. It will probably be very hard to find a publisher, partly because the title is blunt: The Citizens Who Don't Exist. A White Paper on the Long War of Italian Families with Gravely Disabled Children Against a State That Is Deaf, Blind, and Differently Able. I'll let you know as soon as it's ready. Much love and a warm embrace.
Cecilia