Give My Children a Piece of This World
I am a woman born already in sorrow because my father died thirty-six days before I was born. He had fought in the war of 1918, been wounded, came home—but was never recognized for anything. I grew up in poverty with two stepfathers. You cannot imagine the life I had to live: nothing but work, work, work. But I loved working. It didn't weigh on me. I would work and calculate in my head what needed doing at home, what I'd have to manage tomorrow. So I worked, I prayed, I stayed close to the Lord and to Mary, I tried to be an honest woman. I married, and the Lord blessed me with six children. But because I was—and am—a mother whom the Lord tested, He chose to test me further. Of my six children, two are civilly disabled. They are sound in mind and body, but they cannot walk. They spend their lives in wheelchairs and need constant care. Luigi was born on February 5, 1952. Lucia was born on March 1, 1955. As you can see, they are already adults. And as you understand, they cannot do anything alone. Here, there is never anyone willing to lend a hand. My husband is seventy-seven years old, and I am seventy, but I am worn down by countless ailments. I am asking you for help—a gift of love and affection for two immobile bodies, two people with no way forward. They would like to travel. They would like to make friends, to speak with friends. They would like to receive letters. They are in despair, and I despair fighting alongside them, day after day. Help us for the love of God. Help those who truly suffer all their lives. Yes, it is beautiful to pray to the Lord. But it is truly beautiful to do good for those in need, to give a hand to those who cannot rise, to someone who hears a stream flowing but cannot bend down to drink, to help those who have no legs to walk. Give my children a piece of this world that has been denied them. And I, their mother, am always here attending to them. I can never help anyone, because I have no one to turn to. My other four children have gone away because of our poverty, and we four—just the four of us—need so much help. We cannot turn to them anymore; they have their own struggles now.
I greet you with love.
Manetta Martino in Bloise
The Pain
This is not a letter. It is a school essay written by a middle schooler from a village near Bergamo. It says important and true things, and that is why we publish it.
He is a boy, the subject of this suffering I want to speak about. He spends entire days amusing himself with games that we might call trivial and ridiculous—like pulling on a rope hanging from a hook—but to him they are interesting and entertaining.
He lives in an apartment building on the third floor, where he spends all his days. No one talks to him except the people closest to him, and no child invites him to play. Why? Simply because he cannot walk and run like everyone else? He was born with an extremely rare disease, impossible to cure so far, called Lesch-Nyhan Syndrome.
Because of this disease he cannot walk or speak easily as we do. But like blind people who develop sharp hearing, he has his own gift: intelligence. Sometimes he shows he is even more intelligent than many people who consider themselves normal.
Yet this is not understood by people who do not live with him—people who simply say, "Poor boy, poor child!" But they do not try to include him in the race of life. They do not try to talk to him or play with him. They leave the boy in the hands of only two people, his mother and father, forcing them to give up even small things. Because as the boy grows older, even the simplest pleasures become IMPOSSIBLE!
So day after day the child grows, difficulties multiply, but he has never yet known real life—the life lived not only with family, but with many friends, with different people, always meeting new people.
And why?
Because most people refuse to help him. Because they consider him a human being without a soul, and above all, without intelligence, someone who does not "understand"! Here is the face of universal suffering that becomes personal suffering—suffering that only the "unlucky" are expected to know and bear. But those people are not unlucky. Living alongside someone who suffers, they have learned what suffering means. They have learned to look at people with a new gaze—a deep gaze that sees insensitivity. And I have learned much. Suffering with his whole family, I have grown in an environment where one learns the truth of life. Because that boy is DIEGO, fifteen years old. My brother.
Silvia
My Son Teaches Us to Think
I am the mother of Mauro, a thirteen-year-old boy with Down syndrome. He is an extraordinary child when it comes to affection. In the family, through his simple and spontaneous behavior, he has made us all better.
Every day he makes us think. His simplicity and calm seem almost at odds with our world, always rushing and frantic.
Mauro, like Down syndrome children in general, loves music, movement, group games, and peace. Indeed, he notices at once when there is tension in the family, and it takes just one shout or curse word to change his mood.
I do not worry about tomorrow because he has three older brothers who love him deeply. And together with other parents, we have talked about the future, and we think the best solution is especially the Family Homes.
Mauro attends the "Our Family" center in Caorle, in the province of Venice, and is very well cared for by all the teachers and staff—therapists, psychologist. At the center Mauro does mainly group manual work, sports activities (there is a swimming pool), and psychomotor activities.
Here in our village, parents and other interested people have started a work cooperative for handicapped young people after eighteen. It works very well, and the young people are followed by trained staff and volunteers.
Ombre e Luci is a very interesting magazine—clear and straightforward—and I am happy to have subscribed even though I receive other magazines like "The Providence of St. Anthony" and "Our Family."
What struck me most were the articles about how siblings experience having a handicapped brother or sister, because usually only parents are discussed, never the rest of the family.
Angelina
My Son Was Denied Confirmation
Dear friends at Ombre e Luci: We are a family with a handicapped child. We live in a small village of about five hundred people, and as we mentioned in our response to your survey, our son Giorgio, eleven years old, was refused confirmation by our priest.
He was refused out of spite because we—with the priest's consent—had baptized our daughter in the parish where my husband was born and raised.
It started on the Sunday when parents were supposed to attend a meeting about catechism and confirmation in general.
That same afternoon my son was admitted to the hospital with an intestinal blockage. But I sent word through a friend that I could not attend the meeting, and in return I received a form to fill out.
The following Sunday—we had left the hospital on Thursday—there was a service to present the children before the altar.
I came to church with my son. The service began, and they started reading the names of the children, one by one—all except my son's. You can imagine how I felt. My son looked at me and asked why. I said there must be a mistake. Then the catechist came and made the sign of the cross on every child's forehead. All except my son's.
I began to cry. I could not hold back.
When the service ended, I went to the priest to ask for an explanation. He said I should have at least made a phone call. I pointed out that no other family needed to call or give the priest a name.
Our priest is young—forty years old—yet he has never come to my home on his own to visit the child. Even to let him receive communion I have always had to call and ask.
I want to say that it has become difficult to bring him to church because there are many steps to climb, and if someone helps, my son is capable of spitting in their face or saying ugly words. So I do not think it is something a mother finds pleasant.
Another thing: he is the only handicapped child in our village.
Forgive me for this outburst.
Piero and Tullia Benaglio
In the next issue we will tell the story of how a bishop of Rome confirmed a boy prepared during a camp by his friends.
The next issue of Ombre e Luci, which will come out at the end of December, will be devoted almost entirely to FAMILY HOMES.