“I need the day to last 48 hours. Or 72, better. Natalia Laini (41) smiles on the other end of the phone and, in an agitated voice, in the first sentence draws an X-ray of her life. She is a teacher and mother of three: her eldest son, Tiziano (13), has ASD (autism spectrum disorder) and a kidney transplant. She was her donor and was able to give her a better life after receiving a collection of bleak diagnoses mid-pregnancy.
“Tizi has Prunne Belly syndrome (a rare congenital disorder of the urinary system). At 28 weeks gestation I was told that she was going to have severe kidney failure. They even came to tell me that she was not going to be born. Right from the start they were evicting me ”, recalls the mother in a chat with TN.
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Natalia tells that, at the time, they offered her a therapeutic abortion. “Although I am pro-legal abortion, I said no. It seemed to me that the pregnancy was already very advanced, I felt that I had symbolic and cultural tools to face what was coming, and I was also very excited that Tizi was going to survive ”, she recalls.
“I was aware that an endless story was behind it”
Natalia moved from Santiago del Estero -where she was born and lives- to the City of Buenos Aires to face a risky delivery. Tiziano came into the world on January 5, 2010 at the Maternidad Sardá and managed to overcome three cardiorespiratory arrests in his first moments of life. Natalia knew from the outset: each day of his history as a mother would be the door to a new challenge.
Titian started high school. “The question is the acceptance of a profile that does not fit the expectations of normality,” says his mother. (Photo: courtesy Natalia Laini)
“I was aware that an endless story was behind it, although I think you never get to fully dimension it. It is always the expectation versus reality. Until, suddenly, your baby is fed with a tube and a gastric button. And those are truly very hard postcards, ”she portrays.
Titian bears on his skin the marks of 22 surgeries, countless visits to the operating room and two moderate to severe heart conditions. In the coming weeks he will face an open heart operation at the Italian Hospital in Buenos Aires. “You have to solve some valve diseases. He suffers from stenosis: his arteries are closed. The kidney transplant medication makes her progress, ”says Natalia, and her voice releases a sigh that wanders between fatigue and anguish, two feelings that he knows very well.
In the next few days, Titian will face open heart surgery. (Photo: courtesy Natalia Laini)
Titian’s journey for a better life includes the obstacles that come from the bureaucracy of the health system. “With him I learned to be a mother, a nurse, a manager, a lawyer,” lists Natalia, who also got used to living with “the missing piece of paper.”
“I would like that, in that sense, it was not all a suffering. That the mothers who have to face something like this have a faster solution. The human must be above the bureaucratic. And a little piece of paper sometimes stops you from everything”, she comments, and continues: “There are no whimsical situations here. There are circumstantial issues that have to do with the boy’s quality of life. The paper must guarantee access to the right, not violate it”.
At the age of 4, Tiziano was diagnosed with ASD and Natalia understood that the fight to give her son a better life also escalated affective and social ties. “The big question is the acceptance of a profile that does not fit the expectations of normality. He doesn’t socialize like he has to socialize,” she says.
In addition to Tiziano, Natalia has two girls: Mara (8) and Ariadna (5). (Photo: courtesy Natalia Laini)
And he reflects: “It generates discomfort because perhaps, as a society, we are not yet ready for neurodiversity. We live messed with a certain reality, and it is usually very difficult for others to understand that I can be happy too”.
In her role as a teacher, Natalia perceives that these asymmetries are also entrenched in the educational system. “It is an area that is not yet fully prepared for these children. When they teach us teaching, they give us model classes. Then you go to reality and it is a bomb in the face, totally run from the books, ”she graphs her.
“Tiziano teaches me something every day”
Tiziano is starting his first year of secondary school and exhibits a gift for music: he sings and plays the piano. He likes rock, pop and the songs of María Elena Walsh. He also loves to draw and is a fervent fan of Pixar’s Cars saga. “Each little car has a name and a number. There are a lot of them and he knows them all by heart. He tells you one by one. These questions make you see that there are different types of learning and intelligence. And ultimately, I end up learning with him. Tiziano teaches me something every day”, says Natalia.
Tiziano is a faithful follower of the Cars saga. (Photo: courtesy Natalia Laini)
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“Sometimes they ask me how I do it, or tell me ‘you’re a warrior.’ And actually I’m not at all. I do everything out of love for my son. One is not born with superpowers and I think that nobody is prepared to receive boys like that, ”she observes. “I fight every day against my own subjectivity as a mother, and sometimes I think I’m not up to a guy like Tiziano.”
Natalia also has two daughters, Mara (8) and Ariadna (5), who are “divine with her brother.” She completed the language and literature teaching program, at the same time she studied music and educational management, and she still hopes to continue her professional training: “I would like to focus on that, neurodiversities. It interests me and I feel that I have a lot to learn. Of course, the day should last 72 hours.