I have been asked many times to share my experience: what it means to be the mother of a profoundly disabled daughter.
I accepted because it seems crucial that people know our children—so they might treat them differently, and so that these children might finally claim the place they deserve.
There are many ways to tell such a story.
Today I write for those blessed with the gift of seeing things "differently" because they have faith—faith that helps us find meaning in life and discover in that meaning God's gaze upon us, loving us.
I know well that faith does not lighten the practical burden: my daughter is no less heavy to carry; we still meet rejection and incomprehension; her disability still demands a thousand sacrifices from how we live our lives.
But I also know that faith changes everything. Having watched my daughter grow through childhood, adolescence, and into adulthood, and hoping my words do not wound those still raw in their grief, I can say that her presence is also a source of joy. Through her, I have discovered that God is present in my life.
We are all called—each of us in our own way. It is easier to say yes at twenty, facing the future and believing you chart your own course toward holiness, than to discover later what God has chosen for you as an invitation to follow him. It takes a long time to understand this.
For myself, I had imagined everything except becoming the mother of a child born damaged—struck by cerebral palsy, severely disabled.
Lorenza is twenty-four now, and she has a wonderful smile. She depends on us for everything: she cannot walk, her hands are nearly useless, she cannot speak. I wash her, feed her, carry her. Her intelligence is probably profoundly limited, and this is without question the hardest thing to accept. The physical disabilities we can explain to ourselves more easily than this strange fact of a mind that does not fit our measures of normal.
"There is nothing to be done for her." "Put her in an institution, forget about her." "Try to have another child."
"There is nothing to be done for her." "Put her in an institution, forget about her." "Try to have another child."Does our experience as parents—we who know by instinct that our children's deep worth has nothing to do with beauty or intelligence—not transform our hardened hearts from within, giving us a new way of seeing all people and allowing us to live the Beatitudes in truth?
To know intimately a being whose real richness remains unknown draws us naturally to overturn the scale of values our society holds up—a scale that confuses so many—and to assert instead the reality and primacy of the invisible, and the place of love.
When this experience reshapes how we see the world, it also calls us to act.
I fought—like so many parents—against the resistance that blocked my daughter's way. Ten or fifteen years ago, her condition fit nowhere: too physically disabled to live among the mentally handicapped, too mentally disabled to be placed among the physically disabled. I heard—as many others did—the medical verdict: "There is nothing to be done for her." "Put her in an institution, forget about her." "Try to have another child."
But I, like other parents, could not accept that there was nothing to be done. It was precisely that instinct of her worth as a person—not merely an object of care, but a being who wished to live, capable of happiness or unhappiness, needing to love and be loved—that moved us.
For us as parents, before she was our "disabled daughter," she was our daughter. We had waited for her, carried her. We gave her a name, a place in our family. We watched her grow and develop—not like other children, certainly, but we did not measure the weight of her disability as it slowly revealed itself. Here lies the difference between us and the professional, who sees the disability first and only gradually, beyond technical knowledge, discovers the person beneath.
For me and other parents, this intuitive knowledge carried with it a refusal of the death sentence that seemed to be her only future—the absence of any structure to receive her. I was certain something could be done, that we could struggle against her disability and help her live as others do, to reach the fullest possibility of LIFE.
It matters little that our children remain forever dependent, forever unable to produce. They have the right and the need for education suited to them, and for the future, they need places where they can truly live. From this conviction came our union with other parents facing the same struggle, working together to create and sustain the structures her life required.
"This is how we learn to dare to ask for and receive help."
"This is how we learn to dare to ask for and receive help."For people so severely affected—people no one wanted to know about ten years ago (the 1970s, ed.), even less today—this meant a multiplication of effort and energy that is hard to imagine unless you have lived it.
From this union came such riches, such luminous strength, as parents bound together by the same struggle—though living in very different circumstances—found communion.
And this openness, this listening to understand and find ways to ease a well-known suffering, how it has taught us to love everyone else, to listen truly. It is so useful to learn to speak with a child who cannot speak, to go beyond words. And this is how we learn to dare to ask for and receive help to carry forward the projects our children need.
This too is union with others.
It must be said that after we created our association (Les amis de Karen), we were helped in extraordinary ways by many people not directly affected by disability but who gave their time, skill, and money to help us build centers for children—now young adults—living with severe disabilities. This help proved that many understand how crucial it is that parents not carry such a burden alone: a burden so heavy it leaves no moment for themselves, apart from their children's lives, a burden that prevents both parent and child from surviving and finding their own place, where they can live—in their own way—with some happiness.
Because of our association's work, Lorenza now has a life separate from mine. Her existence has transformed my life—not so much because of what she needs from me, though she requires much of my time, but because she forces me to think and act differently.
She is a light, a calling.
I could not have foreseen it. I did not know where the decision to see my daughter happy despite her disability would lead me. I do not know when this adventure will end. But what I know, what I feel in my heart, is that the Holy Spirit guides our search, and we must trust in him.
This daughter is, for me and my family, among other signs, a sign of your presence, Lord—you who reveal yourself always where we do not expect you, waiting for us to discover you.
— Marie Claude Fabre, 1983, from Ombres et Lumière no. 47
