G. and M. Labrousse are parents of three children, including Paolo, who has a disability. They trace part of their personal story—one similar to that of many families, yet utterly singular. Parents who have faced the same trial will recognize themselves in these reflections and in the stance the Labrousses take.
The moment we learn of our child's disability—before birth or after, mild or severe—is a brutal shock for which no parent is truly prepared.
Everything stops. All the dreams we shared at our wedding, all the hopes we carried for the child we would have and watch grow, all of it collapses in an instant.
A Terrible Blow
It is the moment of denial: "Not me. Not him." The moment when we lash out at everyone indiscriminately—at ourselves, at doctors, at relatives and neighbors, at God himself. "How can He permit the suffering of the innocent, of this innocent child who is another self?" For some of us, this particular story begins even before birth: when hereditary risk or prenatal illness threatens, or when increasingly sophisticated prenatal tests reveal—or suggest—an anomaly. This waiting period becomes still harder when termination of pregnancy is presented to parents as an almost automatic "technical solution" following a dire prenatal diagnosis.
The very language used by doctors and lawyers has been reshaped to pressure us: they speak of "preventing disability," when what they really mean is eliminating a disabled human being. Some young parents who refuse this so-called liberation are even made to feel guilty.
Now It Is Real
Here is our child, so small, so defenseless, so fragile. We don't know if he will survive. We rush from specialist to surgeon, through endless tests, operations, medications. The hospital takes him for three weeks, three months.
We think he is suffering, but we can see him only through glass. We cannot hold him. We cannot press him to our heart. When he comes home, the daily demands consume us entirely, leaving us exhausted. How many hours just to feed him? He tires so quickly. How do we communicate? He seems not to respond to our words, our gestures of affection.
We don't know how to go on. Can we really hope for progress when the days pass and the gap between him and other children his age grows wider each week? Every month brings sharper awareness of his "difference." Do our endless efforts mean anything? Will they lead anywhere?
We can live only in the present, because the natural rhythm—the child who grows, who awakens, who learns to walk and speak—has shattered.
The Others Go to School
Around age four to six, a new phase begins. Educators, psychologists, therapists increasingly join us. Until now, their role was mainly to guide, to advise, to support us as parents.
Now they must intervene directly with our child. We must divide the work, weave ties of understanding with them, make them our partners in life.
This is often difficult. Our child is still so dependent on us. We feel displaced. Some parents, tempted to hand everything over because the professionals "know better," may find themselves unconsciously relieved. Whether we build a healthy, active relationship with these therapists—without unnecessary defensiveness—depends greatly on their approach. If they communicate with honesty and clarity, they can ask us parents to align our attitudes with theirs for the sake of the child; to use the same communication techniques; to avoid behaviors or activities that might harm his physical or mental health or slow his development. Most importantly, they can gradually teach us not to be obsessed with his disability, with his dependencies—but to listen to all he can do, to all the richness in his personality, riches so hard for us to discover.
A Disrupted Life
Even if our child attends a center or school, family life bears the marks of his disability: driving him to school, to therapy; evenings, weekends, vacations all organized around what is good for him or possible. For any mother, free time already comes loaded with tasks; when a child is disabled, the weight multiplies—the care, the homework help if he is in a mainstream school.
How many parents have watched relatives and friends—those they thought closest, those they counted on for support—simply disappear?
How many parents have watched relatives and friends—those they thought closest, those they counted on for support—simply disappear?
Can the whole family go on outings or take vacations if he has a physical disability? Can we invite friends over if he sometimes behaves strangely, if he can be aggressive or volatile?
Much depends on the world around us: on family, on relatives willing to spend an afternoon with him, on friends who will open their doors. Too many people retreat when the diagnosis is announced—those we thought closest, those we expected to help us, materially and emotionally. Some families, left alone, fold in on themselves, shutting their disabled child—and themselves—into a kind of ghetto. Too many in the wider family circle stay distant and cautious, thinking they would be intrusive, when even the smallest gesture—a few hours at their home—could break through that wall. Too many strangers look at our child and his parents with incomprehension, sometimes reproach, a look that lands like rejection.
Our efforts do have meaning. There is hope they will bear fruit.
Our efforts do have meaning. There is hope they will bear fruit.
A Changed Spiritual Life
The trial that strikes parents—and siblings too—sends a shock through everyone's system of values and reshapes our deepest relationship with God and with others. What once seemed important now appears trivial against the essential questions: "Why this suffering? What sense does it have? How can God allow this scandal?"
We cry out to Him and He does not answer. Each day brings fresh difficulties—those of adolescence, of adulthood. And the deepest anxiety, lived as anguish: "What will become of him when we are gone? How will he bear this separation, this pain?"
Some of us remain locked in anger. Others sink into resignation.
Yet we know many parents who struggle on, who gradually assume their situation; with the help of faith they move from depression toward true acceptance. We see how many siblings of disabled people mature in the fire of this trial, their wisdom exceeding that of their peers. These families, these people, bent at first under the shock, rebuild a new balance—fragile always, yes, but forged from courage and clarity. Our spiritual life will have passed through the fire of suffering. It will have shed, certainly, every shred of naïveté; faith itself becomes fragile. A setback, a worsening, can always plunge us back into anxiety, even anger. But our child will have taught us that the true qualities of a human being have nothing to do with beauty or intelligence. We have met so many disabled people who illuminate the lives of those around them with their presence. However much they are tried and tested in body and spirit, we know that each of them—like our son—is irreplaceable.
- Giacomo and Maria Labrousse, 1991
(O. et L. n. 92)