Now that Sabina is 15, I answer this question differently than I would have when she was younger. There’s no doubt that this painful experience—more accurately, this drama—of having a severely disabled child changes your life, your plans, your actions, and your way of thinking as a family. Speaking for myself, I believe my life can be divided into three distinct chapters.
The first chapter was our encounter with disability—a progressive one in our case, not because there were any signs of it at birth. Sabina appeared perfectly healthy. The awareness came gradually: first, her eyes, just 25 days after she was born. We were told surgery might save her sight. But sadly, that wasn’t the case. As time went on, I realized her vision was irreparably lost. And just as I began to come to terms with having a blind daughter, I noticed that Sabina wasn’t reacting to anything around her.
She couldn’t hold herself up, sit, or eat like other children. We consulted other specialists: “Don’t worry, a bit of physical therapy and she’ll recover.” I clung to this promise like it was a magic formula. But physical therapy only brought more illusions—and disappointment.
Hope that Sabina might one day stand on her own slowly faded, and each new hope turned into another source of frustration: no speech, no responses, no independent eating, no autonomy—sleep was perhaps the hardest of all.
That’s when I entered the second chapter of my life: the most painful one. I no longer had the energy to fight or take Sabina to more specialists. Life had lost its meaning. I worked only to distract myself, to stay out of the house.
Sabina had no friends, no visitors. People who knew our situation made excuses to avoid us. No one asked, “How’s Sabina? What is she up to?”
Then Sabina started attending a center. For me, it was merely a way to have her out of the house for 7 or 8 hours a day. Life passed quietly—perhaps too quietly. I drifted from my family, from friends, resigned to a kind of fatalism. I’d stopped fighting, lost all hope. Sabina became “nothing,” ignored by everyone.
I grew resentful of society, finding any excuse to skip weddings, baptisms, first communions, and similar events. My relationship with my wife Olga became strained and distant. I’d find any reason to come home late or avoid weekends there. I never really cared for football, but going to matches every Sunday was my escape.
Looking back, that time was the darkest, because there’s nothing worse than having no purpose or hope in life.
Then, thank God—for Sabina, for Olga, for our son Max, and for me—Fede e Luce came into our lives.
How? I don’t even know. It started with a phone call: “Sabina is invited to spend a day with the friends of Fede e Luce.” (No one had ever called about her before.)
I had heard vaguely about Fede e Luce. I remember that when we arrived at the meeting place, the first person I saw was Guenda. She approached Sabina and asked, “How are you, Sabina?” Then she introduced herself to me and to Olga. We left Sabina there—that Sunday was the first time since her birth we’d been without her, but we felt completely at peace, knowing she was in good hands.
Two years have passed since that first meeting, and now my wife and I are part of F&L. From that day, the third chapter of my life began. First of all, it gave all of us a new way of seeing life. Finally, Sabina has friends. Despite her limitations, she is treated as a human being like anyone else—with something to offer. Sabina received the Eucharist and is now fully part of the Christian community. For many years, she had only been pitied—an unfortunate burden, best left unmentioned. Even the Church, the official Church, had shown little interest. Once a year, a priest would visit homes at Easter. Seeing Sabina, he’d murmur, “Poor thing,” or “What a pity,” and move on, as if she didn’t exist.
Today, Sabina is the focus of love and attention at home and beyond. Friends from Fede e Luce always ask about her first when we meet. This has completely changed the relationship between Sabina and me. Though I’ve always loved her deeply, I now see how I had pushed her aside—because I lacked the strength, the light, to truly see her.
Fede e Luce also transformed the relationship between my wife and me. My love for her is now deeper, more genuine. Coming home in the evening is now a joy. I feel more peaceful, closer to my children, and better able to care for them.
Fede e Luce also reconciled me with God. After perhaps twelve or thirteen years, I finally received the Eucharist again—with Sabina—on the day of her First Communion.
All of this has deeply affected Sabina, too. Even if she cannot express it in words, I’m sure she feels it.
Her smile—her most beautiful gift to me—is now more open, more peaceful. And that’s because she is surrounded by love.
Francesco Gammarelli, 1979
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