Building an Informal Network
In responding to your survey, I was thinking about the possibility that Ombre e Luci could become a tool for connecting readers with one another. If readers themselves, drawing on what the magazine offers them, began writing to each other—they would not only be able to share what they encounter (and struggle with) in their daily lives, but they could help those facing the same situation and unsure how to handle it. A double benefit, both for those who write and those who read: the former gain the awareness that they can help someone in need; the latter gain the chance to discover other situations that might solve a seemingly unsolvable problem, or to clear up doubts, or simply to learn from experiences others have already lived through. In this way, we could create a kind of informal network, where everyone contributes and the bonds holding it together grow steadily stronger.
Father of a disabled person
A Small Story
We are two friends of a family in a Fede e Luce group in our city. We read testimonies from parents in Ombre e Luci and felt moved to suggest that you publish the account of a mother who has lived with severe disability in her son for many years—with great dignity and simplicity. What this mother (who prefers to remain anonymous) has written seemed to us a beautiful declaration of love, and we believe it could offer help and comfort to other mothers living the daily struggle of raising children facing such challenges.
I hesitated a long time before I could write down my experience; after all, I asked myself, what have I done that was so special?
Any mother would have done her duty as I have done.
You know from the start, when you decide to have a child, that you owe him everything—sometimes even your life.
Thinking about that, I came to see that my life, in my own way, I gave to my son. I am the mother of a boy who is very, very special.
Of course it is not possible to describe thirty-nine years in a few lines, to reduce to a list the pain, the trials and—why not?—the joys lived through in all that time.
When I look back, I still feel the despair rising up, the anguish that grips your body and soul, and I relive with terrible clarity the moment the doctors told me, however gently they tried to soften it, that my son was ill.
I had understood it already, but the confirmation was devastating.
What do you say when you stand powerless before a terrible disease that is destroying your child?
I think that is the most painful part of what happened to us; you can count the tears, the sleepless nights, the trips to the hospital from one place to another begging for any hope at all, but the pain itself—no, that is yours alone, and to understand it you have to live through it.
I was young when my son was born, full of dreams and the hunger to live. It was certainly hard to erase myself as a person, to give up everything, even a normal married life with my husband; our son always came first. I say it again: it was not easy. You grow into it, little by little.
How many times that old question surfaces: why us? What did we do? And then even your faith seems to crumble, you feel alone.
Yet this experience is not entirely negative. On the contrary, it shows you what truly matters. Empty, false things pass by without even touching you. You have too much else to think about!
Children are not made for themselves, and childhood passes quickly. It is right that they are caught up in their own lives and feel less and less like yours. But mine has stayed with me. He remains always my child to hold in my arms, to caress and kiss.
I cannot nurture great expectations for him: he will not be a player or a lawyer, but I can love him with a complete love—something mothers of healthy children are almost always denied.
Though we are forced into a difficult family life, we do not live a passive one. My son, in his own way, is a person rich in feeling, and in his own way he touches everyone around him.
It is certainly hard to live with him. Sometimes it feels as if he drains your energy—physical and mental—and you wonder how much longer you can hold on. But then it is enough that he smiles at you, or that when you put him to bed in the evening he looks at you and says, "Thank you, Mama, for everything"—and there is complete compensation for all the suffering, the will to go on, and above all, love.
I ask God for only one grace: to keep my husband and me in health, so we can continue the work He has given us, because the uncertainty of tomorrow is certainly a great source of worry.
Many painful experiences have passed and left their mark, yet sometimes I am surprised to find myself admiring the colors and the blue sky, and the pain I have lived does not keep me from pushing my son's wheelchair to the window and saying to him, "Look how beautiful the blue sky is!"
A Mother
The Ones I Like Are All Busy
I left my house at eleven in the morning with Enrico Zampetti, who is very quiet. We get along fine, maybe because we don't have much to talk about. He picked up Stefano Paoletti, who was with his family; I had never been to his house before. After that, when we were ready, we headed to the place.
It was Penna in Teverina. It is not a large town, just a village with a bar where you can dance and get what you want. Every day each of us worked, each doing our own tasks. From morning to cooking, changing things around during the day, I felt good with everyone of all ages, and there were girls there that I recognize even years later. But the ones I like are all busy. With the boys I was decent enough; I talked and joked with some, with others I shared the quiet, the emotions.
At the pool I swam breaststroke and played soccer with everyone. I hated the water balloons, getting water in my face, but I found out I am a guy with feelings.
We went to church where I read the psalms. I saw the procession of Our Lady of the Snow, I danced, and then another day, still everything to experience, right to the end. It was a nice camp about Indians with the leader "Penna Teverina." I felt good with everyone, really. Each person has beautiful things inside to value and not be beaten down by problems. Bye from
Giovanni Grossi
It Seemed Like the Right Thing to Do
I have always followed you with interest.
I have no children with disabilities, but I had two—one stillborn and the other killed in a plane crash. Now I live alone because my husband has been gone for four years as well. In my street there lives a boy with cerebral palsy named Domenico, with whom both my husband and I have always had a good friendship. Domenico was adopted by two unmarried women who have cared for him since he was small and do everything they can to help him fit into society. He attends regular schools, with all the problems that brings for them.
We were also friends with a young married couple who had an autistic son, and they often visited our home because they had been cut off by everyone because of their son's very aggressive nature. Both my husband and I accepted him anyway, even though he attacked us physically several times and really left marks. It seemed like the right thing to do, especially for the parents, who otherwise would have been completely alone. They were simple people, fairly well-off, but because of their son, who was bothering the neighbors, they had to leave their beautiful apartment and move to a small house on the outskirts so they could be independent.
We don't see each other anymore because it is impossible for me to reach them.
Angela Bigi Milano