Why tell Rarina's story? Hers is a life so "rare"—we hope unique—that few could recognize themselves in it. Who could see their own experience reflected in the life of this fragile, isolated creature who is, paradoxically, never truly alone? Perhaps no one. And yet Rarina is one of us. She is one of those children Jesus spoke of when he urged us to welcome children and care for all his creatures.
Rarina was born thirteen years ago with Freeman Sheldon syndrome. I was one of many social and healthcare workers who had the fortune of meeting her in the earliest months of her life. At first, I was embarrassed to admit I didn't know what this condition was. Then, during a meeting, I overheard two doctors confessing they had looked it up in medical encyclopedias themselves. That eased my shame a little—but it deepened my worry about what lay ahead for Rarina.
Some predicted she would not survive her first year. The damage was too severe.
But the months passed, and Rarina—after multiple surgeries, attached to a ventilator, fed through a gastric tube, continuously monitored by machines—kept fighting. Undeterred. Inside the hospital walls, she fought for her life.
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Her parents were young immigrant street vendors, poor and unprepared. They did not know how to care for her once she left the hospital. Rarina needed round-the-clock assistance. No one knew if she could see or hear. She did not smile. She rarely cried. Whatever help the social services could offer would never be enough. Both parents had to work to survive. During the long months of hospitalization, her mother visited every day. But once at home? What then? They went to a judge and gave up custody. Only that way—under state guardianship—could Rarina be placed in a residential home. Even so, finding one proved almost impossible.
After a long list of rejections, finally Antonio and Maria, who ran a family home, agreed to take her in. But their facility was an educational residence, not a medical one. Rarina needed nursing care—interventions that even a mother with some experience could provide to her own child, but which could not be assigned to an educator. And the municipal reimbursement was nowhere near adequate for the continuous care Rarina required. After immense bureaucratic struggle, the town and the local health authority (ASL) eventually reached an agreement to share the cost. Fortunately, Antonio, the home's director, was a doctor himself. He took personal responsibility for her medical care.
The bureaucratic obstacles in this story—briefly summarized here—did not surprise me much. Given how unusual the situation was, some of that difficulty was understandable. What struck me most was Rarina's loneliness. No one advocated for her. No one held her in their arms. No one truly stood by her. When I say no one, I mean no mother, no father, no grandmother. I don't mean to diminish the many workers who rotated through her care, devoted as they were. But she had no parent. No family.
And the "others"—those workers and officials—responded in different ways, sometimes contradictory ones. I remember with affection the nun-nurse on the hospital ward where Rarina spent so many months. Saying goodbye to her was wrenching. At the last moment, on impulse, the sister climbed into the ambulance that was taking Rarina to the home. She held her in her arms for the entire ride, then passed her gently into Maria's waiting embrace. But I also remember others who seemed to be processing a file, not caring for a sick child with a rare syndrome. Some seemed to think: "If even her own parents abandoned her, why should we worry?" When Rarina was still hospitalized, after one meeting where the ASL refused to authorize her placement in the home, a doctor put his hand on Antonio's shoulder and said: "We've taken a real headache off your hands!"
I remember that almost every year, when it came time to renew the ASL authorization for the integrated funding—payments that arrived with staggering delays—we had to fight with successive administrators. Each one seemed surprised that this child remained in an educational facility. One asked me: "Shouldn't she be in a long-term care hospital?" As if Rarina were simply a terminal patient who should have died long ago. As if she were not a child. As if her life—her actual life—did not matter.
Today Rarina is still in that same family home, a place designed for children from birth to six years old. She is now more than twice that age.
Unsurprisingly, despite being legally available for adoption for years, no one has adopted her.
Antonio and Maria, who took her in more than a dozen years ago despite all the obstacles, have remained at her side like parents. This is true even though Rarina still requires feeding through an artificial gastric tube and needs to be suctioned through a tracheotomy. Even though she cannot see, cannot hear, does not smile. Even though she needs checkups, doctor visits, and occasional hospitalizations. They have stayed. And now they must face an inevitable change—Rarina will need to move to a facility with residents closer to her own age. It will not be easy.
In these years, Antonio and Maria have built something profound with Rarina. Maria says the girl chose to live, against all odds. Now she is a living presence among them. The sound of her breathing marks the rhythm of their days, shapes the tempo of their household. She is woven into their existence, and into that of every child there. Not long ago, when Rarina was hospitalized, one of the younger children cried, afraid she had gone away for good. Rarina meets this love with her own presence. Maria feels it physically when she holds her—the way Rarina's body softens, the way she becomes calm.
A telling moment came some time ago: During a brutal heat wave, Rarina was admitted to the hospital. The environment was perfect—air-conditioned, food tailored to her needs, care and attention beyond reproach. Yet she came home severely weakened. Within a short time of being back in her own house, she recovered. Antonio thinks about those hospital days and compares them to the forty-two days he spent beside his mother in a coma. Of Rarina, he says: "In those days, we truly spoke to each other without words."
Antonio believes Rarina's purpose in his life is to draw out the love in those around her. To that ASL doctor who thought he was relieving Antonio of a burden, Antonio would say today: Without Rarina, you would have taken away a piece of my life.
Rita Massi, 2012