Three times in as many days, I have started over, trying to share the path my son's birth—his disability—has called me to walk. Work brought me, within a single week, through a peculiar flashback: from a conference on terminal illness and palliative care in Piacenza to a geriatrics symposium in Florence, ending in work on a sound-and-color project for a disability center, where I heard talk of the film March of the Penguins. Fiorello, who dubbed the popular Italian version, remarks: "These penguins are de facto couples, and when they separate, they don't ask for alimony." (Il Venerdì de La Repubblica.) And again: "We men should learn from the male penguins, who march for twenty days and nights at impossible temperatures to meet their mates." (La Stampa) Penguins can teach us something, certainly. But I find real life more useful to contemplate. So if "Aomak," the breeding ground, becomes the reason for the penguins' "harrowing journey," I can say with equal truth: from birth onward begins the difficult journey of the disabled child and his parents.
A journey where, before faith, human virtues matter—virtues we have built with our own parents' help and cultivated through fitting circumstances: friendship, joy, work. An old friend once gave me a striking image: "Faith without virtue is like a concrete beam resting on whipped cream: it sinks." This extreme picture helps me communicate something I believe deeply: the birth of a disabled child is, like any birth, a call to a path. But this path must be discovered as we walk it, against a few hard certainties: we will face others' resistance and suffering; raising him will be harder; and finally, we will be asked for more. Like a child of my own time, I carried similar impressions—the image our society projects is the "long, straight road" where you run at ease, enjoying speed, the engine's roar, the thrill of passing others. In a beautiful American film, Children Like These, which I find more useful on family matters than the penguin film, the mother of a disabled boy launches a mission to teach nurses and caregivers how to help other mothers: "When I was expecting my son, I imagined a trip to Italy: sunshine, hills, sea and cliffs, music, history. I waited for that landscape for nine months. When the airplane door opened, I saw I had landed in Belgium. I looked around in dismay and asked myself: what am I doing here? Then I thought: but there will be beautiful things to discover here too. It will be harder, but the journey will surprise us, even in this place."
We took two lessons from that film: you cannot go forward alone, and you must create ways to spare others as many "holes in the road" as possible. Years ago, with a graphic designer friend's help, we made a small book titled A World to Discover, distributed in maternity wards to reduce the shock my wife felt at Edoardo's birth—a shock often summed up in a question from nurses, friends, and others: "But poor thing, do you really want to acknowledge him?" From the first moments, we moved forward because of the same virtues we had drawn on throughout life, in study and mountain hikes: virtues that appeal to will—fortitude, so we would not be discouraged; temperance, to manage time with attention to Edoardo's rhythms; and justice, which drove us to fight at school, with the health system, and in the parish, over catechism and sacrament preparation. But Edoardo taught us to live fully the virtue that governs intelligence: prudence. A "natural" prudence toward his uncertain steps toward independence, and a supernatural prudence—choices reconsidered in the light of faith, summed up in "whoever loses his life for My sake will save it." Faith entered then upon those virtues, always threatened (my own failures could fill another essay), completing them in a Christian sense precisely through this reversal tied to deep commitment and, at times, sacrifice—comforted by the many wisdoms we encountered in Latin America and Africa, where we lived.
A sacrifice far from the spotlight, made of small daily things, often unrewarded in the short term, yet it has produced something important in me.
The first, perhaps hardest for a man and a husband: recognizing the splendid work of my wife. I, like many men, attuned to large systems, have learned through the fragility of the smallest to measure the ceaseless attention to small things my wife has always given our two older sons—attention that is essential for Edoardo.
The second: deepening trust in God, recognizing His presence in this trial. The Jews, our neighbors in Mexico, speak of emuna'—recognizing God's presence in the world. How can we not seek and find it in the joy of limits? The difficulty of riding a bike alone in traffic becomes an occasion for discovery—acquiring an old tandem and pedaling together, talking. The third, briefly: knowing that we do not know, the mystery each person represents, which should lead us to listen. 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." Stillness, presence—like the recovered pleasure of a father who can still tell a story to his seventeen-year-old son and watch him slip into that mysterious, serene place that is his sleep. Sleep, which in Islam, as I came to know it in Burkina Faso, is called the little death, the one that opens onto the ghaib—the unknown, the unseen. This unknown, what comes after us, is the final challenge to face. We prepare for it early (Edoardo is coming to love the Saffi, his hotel school) but above all by living now that dimension of community which has produced beautiful examples like the restaurant "Gli Amici" in Trastevere. Two years ago, when Edoardo helped serve there in Rome, he patted a customer on the shoulder and said, "good choice!"—giving me certainty he will bring a smile even to a somewhat sad diner. The smile, the joy: undoubtedly the greatest success, one of the truest translations of the "new commandment," which I think we all wish for our children, disabled or not.
by Enrico Orofino, Ombre e Luci n.92, 2005
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