Lorenza was born with severe complications in 1955. Nearly an hour of resuscitation followed her arrival, and she spent weeks in intensive care. We were told she had been saved. She was our first child. I could not have imagined then that this difficult birth would reshape our entire life ahead. She was safe. Everything was fine.
Three months passed before our family helped us see the truth: Lorenza's difficulties were not normal. The diagnosis of disability struck like a sword. I think of old Simeon telling Mary that a blade would pierce her heart. She too did not know, exactly, what suffering awaited her. It is something like what parents of severely disabled children endure: a revelation that, day after day, will turn their lives upside down.
Lorenza never walked. She never spoke.
Lorenza never walked. She never spoke.Lorenza left us in 1982, at the age of 27. She never walked or spoke. Her hands barely functioned. We had to wash her, carry her, feed her. She wet the bed at night and sometimes during the day. Doctors classified her as profoundly disabled with a low IQ. But how do you accept that your own child will never learn to read, to write, to count? For us, that was the most devastating thing. My husband and I lived through this heavy physical and mental disability by discovering bit by bit Lorenza's limits, and perhaps even more slowly, her gifts.
Now I can speak of it because seven years have passed and I have had time to turn it all over in my heart. A grain of wheat must die to bear fruit. Lorenza's death was harder for us to carry than all of her life had been. In time, it was precisely her death that allowed us to understand God's way toward us.
"You called her to bear fruit." When this title was proposed to me, I thought: I like it, because I will say what I know for certain: Lorenza's life, a life that seemed so insignificant on the surface during 27 years, has meaning. But to discover that meaning, you must cross the barrier of disability. The world cannot do this—the world that judges by its own standards, a world in which some dare to say openly that those who will not have "a life worth living" should be eliminated at birth.
What makes their life not worth living?
She Was Happy to Be Alive
I can say this with certainty: Lorenza was severely disabled and she lived a happy life. I do not say she suffered no pain from her disability, physically or emotionally. I say that she fully answered the call that was hers. Lorenza was cheerful and full of humor. Everyone remembers her laugh—so contagious, so alive.
A profoundly disabled child expresses freedom in how she responds to the feelings of those around her. She perceives them with intensity. We loved Lorenza, and she loved us—our family, our friends—in a way that was extraordinary, never turned inward on herself. After her death, our son-in-law told us that when he first came to know our family, the person who welcomed him most warmly was Lorenza.
That God's Works Might Be Revealed
"You called her to bear fruit."
This calling that Lorenza received is not unusual. It is what the Lord makes known to all people and to each one in particular.
Can we accept that from this affliction, some good might emerge? And what good could that be?
"Go into the vineyard." All are called, at every age, in every condition. All the baptized are to be witnesses of the Good News for the world. Can we accept that from this affliction, some good might emerge? And what good could that be?But can a profoundly disabled child truly be a witness to the Lord? Are we playing with words?
Can we accept that from this affliction, some good might emerge? And what good could that be?
"That the works of God might be revealed in him," Jesus answered his disciples when they asked why a man was born blind.
I know of no clearer answer in Scripture regarding certain vocations. Our disabled children are prophets, like every baptized person, called to make known the works of God that are revealed in them. Their life is a message we must learn to read. It took me a long time to grasp this role of witness that was Lorenza's. We had asked that she be confirmed so that she would receive the fullness of the gifts of that sacrament. But it never occurred to me that she had a role as witness to live out in the Church and in the world.
What Lorenza Taught Us
"You called her to bear fruit, to reveal the works of God"—this God so near, made manifest where we least expect him. The fruit of Lorenza's life, the life of these young people with severe disabilities, is a fruit of conversion for others. It takes their weakness and their poverty to reach our hearts and transform our thoughts and our lives.
Lorenza made us more open, more sensitive to the sufferings of those around us—to loneliness, to struggle, to discouragement.
We are saved when we can ask another: "What torments you?"
The spiritual life is where these children teach us most. Let me give two examples.
The Meaning of Waiting
"Wait" was the word I spoke most often to Lorenza. I had so much to do. Time is one of the obsessions that weighs on parents of disabled children. Finding time, being there in time, having time to care for your child every day, having time for others, for family, for work. "Wait!" and Lorenza would wait, often with great gentleness. Sometimes she showed her impatience in other ways. To know how to wait for the Other, to wait for Him who comes—this echoes Advent. It puts the importance of doing in its proper place. Our children do almost nothing. Yet they know how to wait and to long for the coming of another. Whoever learns to long for his coming, to watch and to wait—the Lord himself will serve him.
Our disabled children reveal to us another dimension: dependence. In care homes made for them, these adults depend on others for every act of their lives. This dependence is a terrible affliction. To be unable to do anything alone—or almost nothing: not even to turn over in bed when in pain, not to eat when hungry, not to move about. All the effort of rehabilitation, from the earliest age, aims at overcoming this dependence, at making them as independent as possible. But there are limits that cannot be crossed, and Lorenza accepted hers with a grace that so many other young people like her also showed.
Lorenza made us more sensitive to the sufferings, loneliness, and struggles of those around us.
Lorenza made us more sensitive to the sufferings, loneliness, and struggles of those around us.I remember one young man I visited in the hospital after surgery. His roommate, trying to get my attention, said: "Ma'am, it's strange about Franky—when he drops something he can't pick up, he says: Amen."
Our young adults accept total dependence: being naked, their bodies deformed, while they are cared for and washed. They have always known their parents' hands, but when it is the hands of young professional caregivers… Here, "the way of being" matters far more than "the way of doing," because our young people, whatever their disability, are extraordinarily sensitive—they perceive immediately the respect, the love, or the indifference, even the contempt, of those who care for them.
A caregiver once told me that after she had cleaned Lorenza from head to toe when she had an accident, Lorenza took her hand and kissed it. They are our teachers. They lead us to meditate on the washing of feet: there is one who, like the Lord, washes the feet of another, and there is one who accepts being washed. How poorly we accept our own moments of dependence—from injury, from illness, from age.
Dependence is an affliction in itself, limiting a person in body, in spirit, in possibility. Yet it can be transformed into an essential and spiritual value when freely accepted. Humanity's sin is the desire to "deify" itself, to accept no dependence, not even dependence on God. This is especially true today, when people, drunk on their own power and knowledge, claim the right to decide over life and death as they please.
Another Revelation
There was a time when I had an immense desire for Lorenza to say the word "mama." I tried different things—touching her chin, trying to provoke vibrations, hoping the sound that came out mechanically might approach that word.
One evening, kneeling beside her, I was pushing her to say it. At first she found it amusing—her expression was playful, as if to say: you can keep trying, but you know perfectly well I won't say it. Then she had had enough. I kept on: I wanted so much to hear that name from her. Then her eyes took on an expression of extraordinary tenderness. What they said was: "What does it matter that I do not say it with my mouth? I can tell you in another way." This deep communication teaches us to read what gestures, a glance, cries, a smile express. It teaches us to draw near to others and understand them without words. It teaches us to pray without words, in inner communion.
Where Shall I Seek You, Lord?
It is precisely because the works of the Lord are revealed in them that our children teach us to believe. Our faith is not belief that God exists, but that God enters our life, that he is near and we must seek him. Where? Christ told us: "What you do for the least of my brothers and sisters, you do for me." The least, the one to whom we give food and drink, the one trapped in his body—this is our severely disabled child. He has been given to us so that the world may discover a certain face of the Lord and his presence.
- Marie Claude Fabre, 1990, from Ombres et Lumière no. 89