Have you ever seen an old man washing his battered Fiat 850 at the edge of a quiet lane near a small fountain? He polishes it, cleans it, hammers out the dents, goes over what he has already cleaned, then steps back to look at the whole car at once, checking for streaks or dull spots. He works with love, with fervor, but also with great labor and fatigue—so that when he finishes, he is exhausted but content. Content because he has kept the dignity of his little car intact, knowing that in this way—machine and driver together—they can hold their own against the other cars, newer and snappier perhaps, but chiefly in better health. This is what a parent must do, and does do, to keep the dignity of a disabled son or daughter high. Washing, cleaning, changing, searching constantly—day and night—to improve whatever abilities the child has, because the parent knows that the next day, healthy people will discard that human utility car if it is not their equal, or if its shabby and undignified presence annoys them. Often a parent grows accustomed to having a disabled child. Sometimes you see one who settles into this misfortune, who feels pity for himself, who is so lukewarm that he does immeasurable harm to the disabled person. Out of this lukewarmness, the help necessary for the child's integration into society is withheld. Advancement toward what is possible is blocked. Every possibility of independence—a primary necessity for living, especially when the source of the disabled person's support disappears—is foreclosed. This is why a parent, when he does all that is necessary, is a parent twice over, because he lives the "other part of life" as well.
The circumstances I was forced to battle darkened my awareness of happiness.
The circumstances I was forced to battle darkened my awareness of happiness.
After this flash of what parents must do for their children, I want to tell you briefly about some chapters of my own life that, with God's help, I have lived and continue to live with my sons and daughter. Perhaps for the first time in thirteen years of marriage, my wife Evelina, I, and I believe Paolo as well, are happy. I was happy before, certainly—but the circumstances I was forced to battle darkened my awareness of that happiness.
My first child, Paolo, was born with a psychomotor delay that we recognized too late to treat properly. Despite medicine's advances and the efforts Evelina and I made, we could not diagnose his condition in time. Only when he was six and a half did we learn he had suffered from hydrocephalus, which had damaged the essential parts of his brain. Even today, after long and costly treatment, he does not speak and does not walk well. He is a disabled boy. He did understand, though, that he had a little sister—Francesca—and he showed her all his joy in his own way.
After much hesitation, we had decided to give Paolo a little sister. A girl was born—and she too had many problems. Misfortune, fate, or God's design willed that Francesca also be disabled. She had a complex bone malformation caused by a very rare syndrome—rarer still. Yet she was highly intelligent, and she was our consolation. She was an inspiration to Paolo, and for us parents a source of daily wonder. We had built our family's future on her—especially Paolo's. By age four she had already undergone eleven surgeries and received a bone graft from one of us parents. The little girl was improving, though slowly. She wore a corset—something we had sought out—that kept her spine straight. One operation had damaged her leg further, causing it to grow shorter than the other. Her little arms could not extend fully. At Lourdes, after bathing in the pool, she turned to the statue of Mary and said something miraculous: "Dear Madonna, make Paolo speak, and let me walk!"
Life is a wonderful thing. The life of a disabled person too has its human and Christian meaning, and can fill the life of a man who knows how to transform despair and resignation into a new surge of living.
From that moment on, we grew aware of this happiness. Yes, these children made us happy. But Francesca died. She died of pneumonia. The Lord transformed this atrocity—so terrible to endure—into love within our hearts, and sustained by faith, he gave us the strength to continue, to live again, and to hope again. After this blow, we wanted another child. Stefano was born—a hymn to life, a sign of God's immensity, but also the fruit of something greater: divine sonship. A Father does not abandon his child—ever.
During the pregnancy, Evelina and I were deeply anxious, but trusting. Many of you would call us reckless. But let me explain. Our serenity through those nine months came not so much from the many reassuring medical verdicts—they said the two malformations were unrelated, and I believed them only partially (as I said, medicine lags far behind)—but from the certainty that if another child were born with abnormalities, we would be ready to accept and welcome that child with the same joy with which I am telling you of Stefano's birth. Life is a wonderful thing. The life of a disabled person has its human and Christian meaning, and can fill the life of a man who knows how to transform despair and resignation into a new surge of living. I can tell you that today I feel the same joy for Stefano as I felt when Francesca and Paolo were born.
Stefano's birth will help us understand Paolo better—he is our great point of reference—while we have the certainty that Francesca will always be with us, watching over all of us every day. Not long ago, I set up a booth for the association I represent at a trade fair, using wood and bricks—simple bricks, some whole and some broken in half. When people asked what it meant, I answered simply: "There are whole bricks and half bricks, and both of them together make up the supporting wall. The half brick was actually a corner header." And I explained that the mason, putting them together well, gave both—through his work—the dignity that belonged to them.
— by Roberto Mezzaroma, 1984