Sirio recovers so fast and so vigorously after his premature birth that he leaves the hospital a month early, before reaching the minimum weight of two kilograms. But one week at home, his heart stops. For seventeen minutes, his heartbeat vanishes. Seventeen minutes that stretch like an eternity—terrible, devastating—while his father races to the nearest hospital, breathing air into his tiny lungs and massaging his microscopic chest. His mother follows (the author, Valentina Perniciaro), seeing "death in every glance that crosses her path before it flees." Death's grip is broken by a resuscitator who tells the parents plainly: "I probably haven't done you a favor. The brain damage is almost certainly devastating."
But it is in that word—almost—where we discover the whole of little Sirio. The first diagnosis hits like a sentence: permanent vegetative state, caused by severe cerebral palsy. He will lose the ability to breathe on his own, to swallow. A tracheotomy and feeding tube become necessary. Yet the boy surprises them in other ways. "You break the rules, you break all the letters, and behind that mouth of yours, frozen and gaping wider every day, there shines an extraordinary smile," Perniciaro writes. Sirio is there—utterly there—not vegetative at all. A neuropsychiatrist catches his gaze in the semi-intensive care crib and sees him not as an inert piece of wood but as the child he will become. Among the many "Pinocchios" she has met in neurological rehabilitation, he is the first. "It is from their eyes, from how they capture your attention, from the somersaults they make you do, from the way they reach toward you, that I begin to see him too—my son," his mother writes. And through her eyes we discover Sirio's astonishing gifts: his capacity to laugh despite his locked, gaping mouth, and his voice.
With "slow, laborious steps, like a cheeky little snail—the swagger of a street kid from the suburbs, almost arrogant in your refusal not to be here, to exist anyway, to exist no matter what," Sirio seizes and conquers, wresting spaces of freedom and movement. First by wheelchair (the boy is a true master at the helm, visible in the many videos his mother and brother share on their social account @tetrabondi), then on shaky, curious legs. With his "welcoming eyebrows and his silent words that speak to everyone in an instant," he claims spaces of communication. He uses images in AAC (augmentative and alternative communication) combined with Lis signs (a severe ear infection damaged his hearing severely), letting emerge the "anarchic, irreverent, and crooked" boy—whose voice is inarticulate yet powerful, whether in his Santa Claus laugh or in his impertinent and disarming "go to hell," perfect for railing against a condition that has nothing whatever to do with the word special—a word that distances us from them in ways that cannot be bridged.
Convinced that everyone needs a new way of seeing disability, especially those who care for people with disabilities ("I hate the pity of people who say 'I could never do what you do… thank God Sirio has a mother like you.' Everyone I met in the trenches could do it. We'd do it even better without empty words that paint us as heroines while abandoning us to a life confined behind closed doors, somewhere else, far away"), Perniciaro emphasizes that Sirio's many victories have been possible only through the essential daily collaboration of many professionals—speech therapists, nurses, psychomotor specialists: "Sirio is their son too." Among these victories is school, which she rightly calls essential. Yet she denounces the scandal of treatment that depends on where you live.
In this book, Perniciaro shares much of herself—both the difficult, profoundly difficult parts (describing "that pain which knows no detonation" in "mothers who try not to feel guilty, who are not guilty but don't know it") and the surprising ones—with generous, powerful, skillful prose. She lets us into her world as a woman deeply loved and loving, as a daughter, a worker, and mother to Nilo too (whose role as brother marks her existence inevitably). An older brother quite unlike other brothers, whose words open each chapter—pearls and stones at once, capable of awakening us and letting us sense how fertile his gaze can be for Sirio and for us. Beside her is Paolo, a man who became a full-time caregiver: guardian of hopes, sometimes hopes beyond hope, for his family.
Perniciaro deserves credit for bringing the dreams and desires of one family out beyond their home's walls—desires so essential to life (playing, sports, school, vacations) yet still too often won through hard battles. She imagines a future truly shared. A future in which the adult Sirio becomes can find his own path. For now he is a "little builder of integration who wants no guides. He wants us beside him, yes, but only to be accompanied and helped on a journey he wants to choose for himself. Isn't that what every mother desires most?" Without question. It is for us as well. We warmly invite you to discover Sirio's story so far—a boy among boys "usually not made this way."