Alessio is the youngest of Monica and Arnaldo's three children, and he was born severely handicapped. For the family, this suffering is compounded by another, far heavier burden. The relationship between father and mother is torn apart because of this son. Here the mother asks herself how to live with hope.
Alessio is almost fifteen. He has cerebral palsy and moves by crawling or dragging himself while sitting. He is profoundly deaf—there is no possibility of fitting him with a hearing aid—and therefore he is also mute.
He drinks only from a bottle, and he can eat by himself, but half of each spoonful falls from his mouth. He drools because he cannot swallow properly, and much of his food ends up on the table and floor.
The Father's Refusal
The severity of this boy's condition goes some way toward explaining his father's reactions. For Arnaldo, seeing his son is unbearable suffering. Psychiatrists call this a "narcissistic wound." The child—this "mirror of ourselves"—reflects back a disfigured image. This is even more intolerable when it involves a father and son. For the father, the newborn is not yet "his" child in the way he is for the mother who carried him inside her body for nine months.
Beyond this suffering, Arnaldo carries a particular handicap: he is an anesthesiologist and intensive-care physician. "Surely," you might say, "a doctor should have greater capacity to welcome a sick child?" But that is not quite how it works. I believe that often in choosing medicine, there lies a deep anxiety about illness and death. A child with severe brain damage is living proof of the helplessness of medical science. Is there inhumanity in this man? No; my husband is very kind to his patients. But once he leaves the hospital, he does not want to encounter them in his own home.
This too is human. Moreover, his professional experience teaches him caution. He has seen too many families cut off from the outside world, living only for their sick child. He does not want his two older sons to have their lives "ruined" by the presence of an "abnormal" younger brother. A legitimate worry. Arnaldo's anguish and suffering in the face of Alessio seem insurmountable. The only solution that appears possible to him is to eliminate the problem: let the child disappear, let some institution take charge of him, and let us speak of him no more. (In truth, this is society's reaction to everything—whether we are talking about therapeutic abortion or institutions for the elderly, the disabled, the criminal—an entire class of second-rate humanity).
Alessio was therefore placed in a specialized institution while still very young. It was, thank God, a well-run place, where the child thrived and felt at home because everyone loved him.
I ended up feeling guilty whenever I cared for Alessio. When he was at home, I never took a moment to cuddle him or play with him. It was forbidden to love him.
I ended up feeling guilty whenever I cared for Alessio. When he was at home, I never took a moment to cuddle him or play with him. It was forbidden to love him.This decision was agonizing for me, but necessary. I had set the condition that Alessio's separation would be "compensated" by frequent visits home. Despite everything, I wanted to live with my son at least for some periods and establish bonds of affection with him. But as the child grew and his "abnormal" traits became more pronounced, the father found it increasingly difficult to bear the sight of him. A quiet war began between us over whether visits should be less frequent and Alessio's stays at home shorter.
The Faith and Light pilgrimage to Lourdes, which I made with him at Easter in 1991, greatly intensified these tensions. At Faith and Light, Alessio had found a place again! When I told my husband, he erupted in rage. Arnaldo flatly refused to meet people capable of welcoming a handicapped boy—he saw them as accusers of his own failure, and this made him feel guilty.
The circle closed. A system that rejects every extended hand and denies life and love is a tightly sealed system.
The Effects on the Family
This refusal upended the life of the entire family and above all represented a fracture in our marriage. I suffered intensely that my husband rejected the fundamental part of me that was being the mother of my son. If he rejected that part, it meant he did not love me. He too suffered: if I did not understand and respect his anguish, it was as if I did not love him. Alessio was the one who mercilessly revealed this disagreement.
The effect of all this was catastrophic for Alessio. The refusal fed his tendency to withdraw into "autistic" behaviors. Arnaldo's harsh gestures to push him away made him scream and threw him into acute states of anxiety that drove him to strike his own head violently. This reactivated the father's anguish.
As for me, the repeated refrain that "there was nothing to be done, that for Alessio everything was the same and that there was no point in doing anything" gradually drained me of will. I could not bear the gestures and looks that kill—never looking at him, never asking about him, pushing him brutally into his room, systematically hiding the wheelchair and carriage to erase all trace of his presence. All these behaviors made me want to scream. But the worst part was that I ended up feeling guilty whenever I cared for Alessio. When he was at home, I never took a moment to cuddle him or play with him. It was forbidden to love him.
When my two older sons were young, they loved Alessio. They did not feel the weight of this conflict that had become so bitter because of him. When they became adolescents, at the moment of building their own identities, they would have needed some peace. But their father did not help them "digest" the drama—and I was certainly not always a source of serenity for them either.
The most common reaction of society is that the handicapped child should disappear or be placed in an institution and never mentioned again.
The most common reaction of society is that the handicapped child should disappear or be placed in an institution and never mentioned again.The Way of Hope
I have often asked myself whether separation might be right. Sometimes it seemed like painful but necessary surgery; sometimes like a temptation born of despair. The benefit would have been a life and a home entirely my own, where Alessio could have his place and where I would be free to love him and welcome his friends. An appealing idea. Yet I rejected this possibility because I have a horror of divorce. The thought of dismantling what, despite everything, had been built over twenty years, made me ill. Our married life works in every way that does not involve Alessio. Furthermore, divorce is not a path Christ recommends. This is why I stay. But how do I keep from sinking into despair and exhaustion? How do I find the way back to hope?
First, I have the great fortune that Alessio thrives in his institution. I am continually filled with gratitude to God that places like this center exist, where young people are loved as they are and cared for with constant attention. Not everyone has this blessing. Then there was the immense grace of the pilgrimage to Lourdes, where I encountered looks that give life, and gestures that said at every moment: "Alessio has worth to me and I love him." These looks and gestures were the visible sign of God's love, and they restored to Alessio and to me a place in the human community.
For my part, I work with all my intelligence to open other paths of hope. Regarding Alessio, I try to strengthen his relationships with the people who care for him. Regarding myself, I try to cultivate "the looks that give life." I also have the vast work of my inner formation ahead of me. I still have far to go before I am like Him who endured spitting without saying a word. With Alessio, I am like a mole working in darkness, tunneling to open the gates of the citadel. I try to speak, to speak constantly around me without tiring, to break through the wall of silence that surrounds him, so that even our friends might slip in a word capable of opening a door.
I also try to create moments of encounter between my two older sons and young people from FAITH AND LIGHT, so they might learn to see their brother through different eyes. I do this because they do not know how to reach him—Alessio is too far from their world of competition.
God's grace will do the rest. For this intervention of the good God, I pray as well as I can, which is poorly. So I ask Mary for help: "Mary, receive our prayers. Complete them. Purify them. Present them to your Son." I have also confided in a Little Sister who is much more faithful in prayer than I am. I have asked many friends to pray for my entire family. For this reason I know that we are entrusted to God's hands.
"It is true that we are saved, but in hope. (...) We hope in what we do not yet see; we await it with patience." (Rom. 8, 22-27).
I have experienced that there is truly a joy and a dynamism in Hope: this was the grace of Lourdes.
(O. et L. n. 100).
- Monica L., 1993