01-10-2011 - Traces, n. 9

stronger than darkness

An Extra Chromosome that Builds the Instant
He was going to die, but Daniele is still here, tiny and strong. “He doesn’t let us stop short at what we understand.”

by Davide Perillo

The only certainty seems to be that extra chromosome, Trisomy 18. It was diagnosed when Daniele was still in his mother Chiara’s womb and the doctors spoke of various hypotheses, all of which pointed to his death, “perhaps even before birth, probably right after.”
Instead, Daniele is there at home in the kitchen in the arms of his father, Marco. At the end of July, he left the hospital, with its web of tubes and drips and respiratory crises that seemed destined to take away his life. He will soon be four months old. On September 17th, there was a celebration for him at Morimondo Abbey, on the southern outskirts of Milan. The church was full of people from all over Italy: from Romagna, Piedmont, Trentino... A people born around his cradle, around the faith of Chiara and Marco, and around the presence of that tiny, fragile baby, just six pounds, but with a capacity to change the world, to build, and to generate, more powerful than many other lives put together, because he points at once to another certainty. “He is here, and he is wanted as he is,” says Chiara, who is simple and clear–just as she was that first day, when she heard the diagnosis. “I wept, yes. No one wants a sick child; you expect him to be normal. You want him healthy. But I was certain of one thing: Daniele’s arrival was something for us, for me. I saw him in the scan, with his hands all twisted, and I told myself: “If You are creating him like this, it means You want him like this, like You want me with curly hair.”
Put yourself in their shoes, in the place of that father and mother with a baby who might not be there the next minute. This is true for all children, certainly, but Daniele is there every moment as a reminder of this fact; he makes every instant of normal life dramatic: a simple cold from his brother or sister, Anna and Eugenio becomes real crisis. “Yet, over these months, we have made a journey. It is as if every day were a new brick added to the wall of certainty.” Why? “Because of many things that have happened: changes in the people around us, our friends, the fact that God never leaves you alone, but above all the work on School of Community, an ongoing recuperation. And my own growth, that ‘I’ that wakes up and little by little you find yourself more alive, more attentive to things.” For example? “As soon as I left the hospital, I was all agitated: ‘Let me get this done and I’ll be with you.’ It was a pressing desire. ‘Perhaps I will never be able to hold you in my arms again.’ But it is never enough. One day, I asked myself: Why? Even if I were to hold you in my arms from morning to night, for you, it would not be more than you already have, and for me, it doesn’t solve the problem of life.” And so? “So you get to the heart of it: Daniele is a challenge for faith. The question is whether we believe in Jesus, if we recognize the presence that makes him and us. And whether this can sustain us.”

“Yeses” like bricks. It is striking to think that, after all, everything began from another difficulty a couple of years ago–a crisis; everything seemed to be falling apart. Then, Fr. Eugenio proposed that they move home to another town. Then came an encounter with other friends, but above all the challenge that was in that proposal “to take ourselves and Christ seriously;” to take the faith seriously. “We accepted,” Marco says, “And when we realized that something was happening to us more interesting than on the day of our marriage, we said: There you are–Christ does not abandon you. You give Him just a little and He opens a way in the desert. This is why in our reaction to Dani’s illness we were able to say, ‘Let’s see where this road is leading us, Lord.’ But I never felt that this was something against me.”
He, too, is laying his bricks, his “yes” and his discoveries. “When he was having his crises in the hospital, at times I would say, ‘Your time is limited, you know. You have to be ready.’ I tried to make sense of it. But when he turned blue, I would pray for it to pass. It’s dramatic; you find you are not prepared. You can’t be. So you cry, you pray: ‘I can’t bear it, help me.’ Or, ‘Make him breathe.’ And you are all there in that entreaty; you are impotent; you receive everything. But you are doing all you can, because you are praying.” What do you ask for yourself? “Don’t let me stop short at what I understand, because it’s always too little. Help me to go a step ahead, because there is certainly something for me.” And what do you discover? “You find yourself more attentive to things, to understanding what ties him to life, to his relationship with God. And you realize that it is the same for you; the same relationship. He has no pretensions or complaints. He is there, living, and I want to be tied to Christ like that, directly, with no filters, looking at the reality that happens.”
And the other children? “I look at them in a different way,” says Chiara. “With Anna, the eldest, I have always thought, ‘Do this, I’ll explain life to you; this is the wrong way.’ Instead, God has made her as she is, with her own character. This attitude is more for her, and therefore for me. It’s no longer, ‘I’ll teach you,’ but, ‘Let’s be together in front of what’s there.’ You look at them not as your own children, but entrusted to you to bring up. If I don’t teach them to look at life in this way, what can I teach them?” And Marco, “I had a thousand worries. Dani is so frail; perhaps the others will harm him without realizing it. But they are very mature. Eugenio is very gentle; when he passes by Daniele, he stops to give him a kiss, always. Then he goes his way. It reminds me of when you pass before the Blessed Sacrament. You genuflect, you acknowledge Him.” And you live.

In small things.“You see, we are discovering that the Lord never imposes Himself when He approaches you. He is discreet; He touches you in small things. It is from this that I sense more and more that Daniele is wanted. For example, in the help people send us for practical needs like medicine and the expenses for the Baptism. It is as if the Lord were saying every time, ‘Don’t worry; I am thinking of it. I am thinking of him and of you.’ Every day, you see more and more this Presence that accompanies you.” And He builds-in the drama of suffering, but He builds. “It is true; every day I find myself more certain,” says Chiara. “You have seen, you have understood, you have accepted reality. You have laid another brick, and perhaps in the evening you find yourself saying, ‘It’s just as well Daniele has an extra chromosome, because everything that has come with it is great.’”