My work has taken me, over the course of a week, through an odd succession of encounters: a conference on terminal illness and palliative care in Piacenza, another on geriatrics in Florence, and finally a project on sound and color at a center for the disabled—where someone mentioned the film "March of the Penguins." Fiorello, who dubbed the Italian version, said: "These penguins are couples, and when they part, neither asks for alimony." And again: "We men should learn from the male penguins who march for twenty days and nights through impossible cold to meet their mates."
The penguin comparison may help, but real life seems more instructive. If "Aomok," the breeding ground, becomes the reason for the penguins' "harrowing journey," then I can say with certainty that the difficult voyage of the disabled child and his parents begins at birth.
It is a journey where, before faith enters, human virtues matter most—virtues we have built thanks to our own parents and cultivated through the right circumstances: friendship, joy, meaningful work.
A friend once gave me a striking image: "Faith without virtues is like a concrete beam resting on whipped cream—it sinks."
This extreme picture helps me express a deep conviction: the birth of a disabled child is, like any birth, a call to a journey. But in this case, the path lies entirely ahead, uncharted. Yet certain things are certain: others will struggle to accept him, raising him will be harder, and more will be asked of us.
Like a child of my time, I carried the same assumptions. Our society projects one image: the long, straight road down which we race easily, enjoying the speed, the engine's roar, the satisfaction of passing others.
There is a beautiful American film about family called "Children Like These" that I find far more useful than the penguin documentary. In it, the mother of a disabled boy teaches nurses and educators how to support other mothers. She tells them: "When I was pregnant, I imagined a trip to Italy—sun, rolling hills, sea cliffs, music, history. I waited nine months for that landscape. When the airplane door opened, I saw I had landed in Belgium. I looked around in shock and asked myself: what am I doing here? Then I thought: but there are beautiful things to discover here too. It will be harder, but this place will surprise us as well."
Two lessons we took from that film: you cannot move forward alone, and you must create occasions to spare others the "holes in the road" that we ourselves encountered.
Years ago, with help from a graphic designer friend, we created a small book called "A World to Discover" to distribute in maternity wards. We wanted to soften the impact my wife felt at Edoardo's birth—the impact summarized in a question asked by nurses and well-meaning friends: "But poor thing, do you really want to acknowledge him?"
From the very beginning, we were able to move forward using the same virtues we had exercised throughout our lives: in study, in mountain climbing, in all things that appeal to the will. Fortitude, so we would not be discouraged. Temperance, to manage time with rhythms suited to Edoardo's needs. Justice, which pushed us to fight—at school, with the health system, in our parish, for catechism, for the sacraments.
But Edoardo taught us to live prudence fully—the virtue that governs intelligence.
A natural prudence toward the uncertain steps of independence, and a supernatural prudence: choices reconsidered in the light of faith, summed up in the words "whoever loses his life for my sake will save it."
Faith entered, then, upon the virtues—always fragile, always threatened—to complete them in the Christian sense. This completion grew from a profound commitment and, at times, sacrifice, sustained by the many wisdoms we encountered in Latin America and Africa, where we lived.
A sacrifice far from the spotlight: small daily things, often with no immediate reward, yet it has borne real fruit in me.
The first fruit, perhaps the hardest for a man and a husband: recognizing the splendid work of one's wife. I, like many men, attentive to grand systems, have learned through the fragility of the smallest one to see the continuous attention my wife gives to small things—attention she had already given our two older sons, but which is essential for Edoardo.
The second: deepening my trust in God, recognizing His presence in this trial.
The Hebrew people, our neighbors in Mexico, speak of emuna—recognizing God's presence in the world. How not to seek and find it in the joy of limitations? The difficulty of riding a bike alone in traffic becomes an occasion for discovery: we buy an old tandem and pedal together, talking.
The third—briefly: knowing that I do not know, the mystery that every person represents, which should move us toward listening. Listening to Edoardo is not optional. It requires what Cicely Saunders, founder of the hospice movement, called "listening while still, the way we see ourselves reflected in water."
To be still, alongside him. Like the pleasure of a father who can still tell a story to his seventeen-year-old son and watch him slip into that mysterious, peaceful place that is his sleep.
Sleep, which in Islam—seen up close in Burkina Faso—is called the little death, the one that opens toward ghaib, the unknown, the unseen.
That unknowing, what comes after us—that is the final challenge to overcome. We prepare in time (Edoardo is discovering the Saffi, his hotel school), but above all by living now in that dimension of community that has produced such examples as the restaurant "Gli amici" in Trastevere.
Two years ago, as Edoardo helped serve there in Rome, he touched a customer's shoulder and said, "Good choice!"—a small moment that assured us he will know how to bring a smile to even the saddest face at table.
A smile, joy: undoubtedly the greatest success, one of the truest reflections of the "new commandment." I think this is what we all want for our children, disabled or not.
Enrico Orofino, 2005