"Chicco is truly a fortunate child."
My family doctor said this to me some time ago, and it has stayed with me ever since—pushing me to reflect on what it means to be the mother of a boy with disabilities.
Yes, Chicco—the "fortunate" child—is a sixteen-year-old with Down syndrome, a malformation of his right hand, and complications from congenital heart disease.
If my doctor had said this to me sixteen years ago, I would have thought him mad. I might have reacted with anger. Like every parent who learns their child is "different," I went through periods of despair and rebellion.
But today, after sixteen years of walking this road with him, I understand what he meant. Chicco is a serene young man who lives in a serene family. He has his responsibilities, his interests. He is sociable with everyone, and he has no shortage of friends. Our family life is "normal": my husband works as an industrial manager, I teach at a middle school, my two older children are in university, and Chicco attends an ACLI community center. When we travel, go on vacation, eat at a restaurant, stay at a hotel, or visit friends—Chicco is with us, without difficulty. For us now, he is a son, not a daily burden to be carried with suffering.
Chicco is a serene young man. He is sociable with everyone, and he has no shortage of friends
What a road we have traveled in these sixteen years!
A road strewn with obstacles, but none that could not be overcome with courage and faith.
Looking back, I remember the first step out of despair. After asking myself countless times, "Why me, Lord?" one day a different question suddenly rose from my heart: "Why not me, Lord?" Did I have some special merit that exempted me from suffering?
The Lord had always been generous with me. I had never lacked anything. I had realized every dream I held. I had everything one could desire: a serene and united family of origin, a wonderful husband, two wonderful children, work I loved, a good social and economic position, and—not least—faith. Facing this trial, I could not let fear and despair defeat me. And I was not alone. My husband was constantly present with his practicality and clear thinking. My other children loved their little brother without hesitation. My grandmother and aunt were ready to help me shoulder the daily care of such a fragile, delicate child.
My relationship with the outside world was not always easy. I remember the anger I felt when someone, thinking they were offering comfort, spoke of my son as "a cross." I never saw him that way. The pity of others was harder to bear than their indifference.
There were many difficult moments—frequent illnesses, numerous hospitalizations, the fear, felt so many times, of losing him.
In those early days, I risked a terrible mistake. I felt I needed to dedicate myself entirely to Chicco—partly from natural maternal love, partly to bear his suffering for him, perhaps to atone for having brought him into the world as he was. I gave up any leisure. I would not leave him with anyone, not even family. I had decided to quit teaching to devote myself entirely to him.
My husband, fortunately, gently pushed me out of that shell. I am grateful to him for that. If I had continued that way, I would no longer have been a serene wife and mother. My family would have suffered for it. My other children needed a balanced, peaceful mother. They could have "normal" relationships with their brother only if I could keep his problems from weighing on them. After a year away, I returned to teaching. The principal of that time still recalls how I presented myself to him for the first time: with Chicco in my arms.
Yes, Chicco—the "fortunate" child—is a sixteen-year-old with Down syndrome, a malformation of his right hand, and complications from congenital heart disease
As Chicco grew, I faced new challenges constantly, but I felt strong within myself. The Lord, by his grace, gave me the strength to move forward without falling into discouragement.
I have encountered misunderstanding and indifference from others. But I have also found many people who helped me allow Chicco to grow in body, spirit, and heart: doctors, teachers, therapists, educators, and in recent years especially the generous friends of Fede e Luce.
How much Chicco has taught me! Through his eyes, I have learned to recognize true values and to cherish what matters. I have learned to see people for who they are within, not how they appear. I have discovered the true meaning of friendship and solidarity. Today Chicco is a powerful force binding our family together—a source of joy and love.
I want to close this confession—perhaps a bit scattered, but sincere—with an acrostic that Chicco's literature teacher wrote for him at the end of middle school:
For William (Chicco) Diliberto, student and friend.
W
I
Long
Lively
Indelible
Amiable
Moments
Days of life spent
In togetherness.
Life itself,
Ineffable
Bank of
Experience,
Render your "being here"
Therapy for all our hearts,
O dear friend!
—Chicco's mother, 1994