Sabina is a child with severe physical and mental disabilities. She was born prematurely, underweight, and blind. The struggle to survive began at once. As our second child—we already had a healthy boy just eighteen months old—we knew almost immediately that something was different about her. Every day, in countless ways, we could compare her to her older brother. The contrast was always there.
Sabina didn't eat properly; she would fall asleep at the breast. Mealtimes stretched on endlessly, one blending into the next. She wasn't gaining weight. At first we thought the delay might be due to her prematurity and blindness. During her first two years, Sabina had twelve eye surgeries in a futile attempt to save her sight. We believed then that the eyes were the only problem. But the many medications and repeated anesthesias gradually destroyed her digestive system, which had been fragile from the start.
All of this hindered her physical development. At one year old, she still couldn't sit up—just lay in her crib like a newborn. We took her to see Professor Bollea, but we had to wait three months for an appointment. His examination suggested she was spastic, but that intensive physical therapy might help her catch up.
I believed in physical therapy with blind faith. Professor Bollea told us that a mother was the best person to work with her own child, given their natural bond. His words filled me with enormous responsibility. There seemed to be only two choices: either I succeeded—at any cost—or Sabina would be neglected. One of the Professor's trusted therapists came to teach me the exercises. I don't know where I found the strength or how I avoided a nervous breakdown, but I managed to do the three hours of daily exercises he required.
I realize now what danger we were in. The Professor didn't understand what he was asking of a young mother with other family responsibilities—a toddler and a husband. Sabina hated physical therapy. She screamed and cried constantly, both during the exercises and through the night. From a completely passive child who slept around the clock, she became a wild creature shrieking twenty-four hours a day. My husband helped as much as he could, but he had to work. By evening, the worst was done. He helped on weekends and we took turns getting up through the night. Our neighbors complained about the noise. I still don't know how we avoided a breakdown, but those early years were truly terrible.
"Every center gave us the same answer: your daughter is too severely disabled."
The first real help came from Scuola Serena. When Sabina was four, we began looking for a place—a school, a center—where we could send her during the day. Every place we tried gave us the same answer: your daughter is too severely disabled. Scuola Serena was the only center willing to take her from 9 a.m. to 4 p.m., even at her level of severity, and they sent a driver to pick her up and bring her home. It was an enormous relief. My son had started school, and I finally had some freedom in the mornings. I could breathe again. I stopped doing physical therapy at home, hoping the school would handle it. They had two physiotherapists and a doctor on staff. Maybe they did something, but mostly it was a very good daycare.
I limited myself to taking the children for walks in the afternoon. Without the intense therapy at home, Sabina became calmer. We began to have peaceful nights. Slowly she became good-natured again. Over time she drifted into a kind of apathy, and I drifted with her. By then we knew her eyes couldn't be saved. We also understood that mentally she was severely delayed and physically she could barely sit upright, could stand only when supported and for the briefest moment, couldn't walk, and remained very small for her age.
"As time went on, both her physical and mental delays became increasingly clear."
As time went on, both her physical and mental delays became increasingly clear. By twelve, she was either sitting badly, or in someone's arms, or lying on the floor or in bed. She was very passive and weighed twenty kilograms. During this period, on the school's advice, we managed to get an appointment in England with Professor Kevin Murphy for a hearing assessment.
After examining her, Professor Murphy said it would be useless—impossible, really—to test Sabina's hearing. She was so understimulated that any test results would be meaningless. What she needed was reeducation. We arranged to meet with Dr. David Byrne, a specialist educator who worked with multiply disabled children.
This marked the second major turning point—thanks to this educator's deep expertise. We left Sabina in England for three months with him and his assistants. They provided intensive therapy, but without my involvement. Both Murphy and Byrne believed my presence would be too emotionally demanding and stressful for me (wise people indeed). Several people worked with Sabina in rotation, always under Byrne's direction. After three months, Sabina began to balance herself, then to walk, to climb stairs, to eat solid food instead of only puréed meals. She began to hold a cup, then a spoon. Most importantly, she began to recognize people and behave differently with different individuals. Before England, she showed no recognition of anyone, not even her parents. When she came home, she weighed twenty-four kilograms—she had gained three kilograms in three months. Back home, I continued the methods Byrne had taught me, and Sabina kept developing in every way. We finally had to buy new clothes and shoes constantly. By sixteen, Sabina weighed forty kilograms, double what she weighed when we'd taken her to England four years earlier.
In 1978, my husband and I discovered the Faith and Light movement, and this began the third phase of help—social and spiritual this time. Through Faith and Light, Sabina had friends for the first time in her life. Until then she'd known only family and professionals. At Faith and Light she found people who loved her for who she is, who saw her as a person with her own limits, her own needs, her own quirks. Through Faith and Light, Sabina made her First Communion. She began to participate in religious activities. At eighteen she was confirmed in our parish, alongside other girls her age. Sabina's entry into the Christian community changed my husband and me. We were converted. I came to know God through Faith and Light. It's difficult for a believer to explain to a nonbeliever how one can be certain God exists, or what one's experience of God is like. If it were easy, everyone would believe. But I think God works through people. It's other true Christians who first stir our curiosity; after that we must search alone. When we desire to make that search, God meets us. True Christians, through the witness of their own lives, can convert others—can awaken the search in them. This is a gift. And Faith and Light has this quality. I think it is a converting movement. Our life now—my husband's and mine—is not easy. The problems we had before are still there: the weight of being bound to a person who cannot care for herself, fear for the future, these remain. But now we know God is thinking of us. He knows everything. Everything is under his control. We still have difficult moments, moments of exhaustion. But we know why we do this. We know it all has meaning.
by Olga Burrows Gammarelli, 1986