Last updated on March 18th, 2021 at 11:46 am
Little Agnese, seven and a half years old, has congenital microcephaly. She also suffers from drug-resistant epilepsy. She can’t see, can’t speak, and can only be fed through small tubes connected directly to her stomach and intestines. Hers is one of those lives which, according to some, should be prevented. Orwell birthed the term unperson in his novel “1984” – those who have been executed and whose existence has been erased from both history and memory. Some go past unperson to nihilism ; Agnes’ is a life not worth living.
Yet, in her misfortune, Agnes is a very lucky child. Not only because she has lived much longer than her pediatricians had anticipated but, more importantly, because she has found an amazing adoptive family. “This baby girl was born ’with a timer’”, father Luca Russo told iFamNews. “When they gave her to us, they told us to prepare ourselves because, having had little brothers affected by the same pathology, they said she would not live past three years. We love her with all our hearts and Agnese, even in her silence, gives us back the beauty of life which can only be grasped when living by her side.”
Agnese is not the only “fragile” child adopted by Luca and Laura Russo. The couple has been married since 1998 and met in the context of the Pope John XXIII Community, founded by the Servant of God Don Oreste Benzi (1925-2007). They’ve spent the last 23 years in Assisi and during that time, they have welcomed into their home a few dozen people – both adults and children – who all have one thing in common: a “discarded life”. “Some of these children are now in Heaven,” Mr. Russo continued. “They have honored us with their presence, allowing us to look with a different eye at the horizons of life, and to give a different depth to the meaning and dignity of the things that really matter in life.” The Russo family currently consists of about fifteen people, including Luca’s eighty-year-old parents, his two biological daughters aged 20 and 19, numerous adopted or foster children, and a former prisoner who has become a volunteer in the home.
To all the children and young people who have passed through his family home more or less temporarily, Luca has dedicated the book What a beauty – In praise of fragile bodies and a culture of care. It is an essay that, alongside the concrete experiences of every day, proposes a philosophy of life based entirely on the culture of giving. This is a culture that is certainly not based on fine words, but on self-sacrifice and radical choices that shake and strike the heart.
“Agnes gives us the grace to spend late nights on her,” says her dad with a hint of healthy pride, “to make our legs and wrists shake at times when she is in the grip of sudden febrile seizures or epileptic attacks. It also allows us, however, to grasp those tiny things in life that make all the difference in beauty. Hence, the title of the book. We recognized that so much beauty has passed through our arms and still fills them. Those who read it, I believe, can rediscover their own beauty even in the fragility of their own lives, and therefore find consolation.”
The book came out on February 9th, which also happened to be National Vegetative States Day. While the release date was not planned at all, it just so happened that little Agnes was in a state of “minimal consciousness”. “She doesn’t have self-awareness,” explains the adoptive father, “so it’s also difficult to offer her educational stimulation.
She receives respiratory physiotherapy and postural gymnastics (ed. the latter helps maintain elasticity in the tendons and safeguards against muscle atrophy). Agnese lets herself be manipulated; she lives through this experience passively. Hers is one of those bodies without “gravity” or “specific weight”, just waiting to be anchored to the ground, to feel that we are at her side. The way to restore dignity to these creatures is through our presence, through our sacrifice, through the relationship we create with them and which testifies to everyone else that there is a person there.”
In addition to Agnese, Luca and Laura Russo have adopted another child affected by a very serious syndrome. “He came to us in a very critical condition but is now showing great potential for recovery. All of this despite an illness he will carry with him for life,” Russo says. “In our family home, we have had a boy who was left in a wheelchair after a car accident, and a blind boy who has been with us for 22 years; that is, since birth. For 12 years, we have welcomed an ex-convict who first came to us during his parole. After serving out his parole, he chose to stay in the family home as a volunteer. We also have twins from Tanzania who came to us when they were four-years old; they are now in their twenties. We also host two sisters, now adults, whom we took in in 1998. Two of our adopted children are in Heaven today. One of them (to whom I gave the fictional name of Alfredo in the book) lived tracheotomized and attached to machines. He left us in 2015, following the degeneration of his disease.”
Luca and Laura’s two biological daughters were born when their parents were already welcoming other children into their home. So they immediately breathed in the atypical atmosphere of a large and “particular” family. “To them, ours is a normal family,” the father confides. “It wasn’t until elementary school, when they started going to their classmates’ houses, that they noticed there were families of only three people eating dinner with the TV on. Then they’d come back and tell me, “Mamma mia, daddy, how sad and how quiet!” For them, an ordinary life has always been the air of confusion/festivity in a house where you have dinner with at least 15-16 people…”
In the book, Luca Russo writes: “Euthanasia is invoked by those who have lost the key to happiness. And it is true that the key that opens the doors to a happy life is also possessed by those who live an entire existence dependent on the life of another.” He explains his opposition to the discard culture as follows: “I can be dependent on others because I don’t have eyes to see, because I’m tracheotomized or feed myself with PEG. Dependence on the other is blasphemy in the eyes of those who advocate for self-determination at all costs, taking this principle to extremes. In doing so, they disavow the dignity of lives totally dependent on others, legitimizing their suppression. Instead, even an “addicted” life can become a beautiful life. If only we were able to build a society that is no longer selfish and egocentric but one of solidarity, where the strong mingle with the weak and take care of them, we would find the keys to happiness for all.”