Dear friends,
I have read your letter with deep emotion, and your trust has moved me profoundly. I thank you for sharing with such honesty the temptations of despair and anger you have felt in the face of your trial—the condition of your little Umberto, who cannot see, who barely hears, whose brain is severely damaged, and who will almost certainly never walk.
You tell me, too, how little support you have received in this trial, one of the heaviest any family can bear. The way your doctor delivered the diagnosis has left a wound that will not close. A chasm opened between you and those who stood nearby, even the closest ones. You have known the exhaustion of sleepless nights; the anxiety and discouragement that comes when progress does not come, despite all your efforts and care; the anguish of conflicting medical advice, sometimes contradictory; the tensions between the two of you, multiplying, with guilt overwhelming you (even when you place it on your spouse); the awkwardness of the priest when you asked for Communion.
It is hard to remain in such darkness, with this bitterness in your heart, not knowing what to do for our son
You speak too of the daily anxiety over decisions about his education. Where you live, there are no specialized care homes, and you do not want Umberto taken entirely from the family. And then there is the anguish about his future. When he is older, will there be options other than an institution? You end your letter with these words: "It is hard to remain in such darkness, with this bitterness in your heart, not knowing what to do for our son."And yet your letter shows that through all these difficulties, you have known what to do. Your little Umberto, limited as he is, feels deeply the quality of the love you have for him. In your gestures of gentleness and tenderness—when you bathe him, when you dress him, when you feed him, when you hold him close—you fill him with what is essential for him to live: the feeling of being loved.
A nun who dedicated her life to severely handicapped children once told me of a shattering experience she had with Teresa, a girl profoundly disabled. Each day the sister cared for that small body with tenderness and respect, a body that appeared empty of mind.
The nun was called away suddenly to her father, who had had a serious accident, and was gone for three days. When she returned, she learned that Teresa had been complaining and refusing to eat since the sister left. Without anyone knowing it, Teresa had formed bonds so deep with the one who mothered her that she refused life itself if that person was not there. And when she saw the nun again, for the first time, Teresa managed a smile. In the hearts of our brothers and sisters who are so profoundly wounded, there lives a whole world that we can only glimpse. In a single moment, Teresa had shown herself capable of an answer of love.
This made me think of St. John of the Cross, who writes: "The smallest gesture of pure love is more useful to the Church than all our works together." Your little Umberto, like Teresa, like all the children in whom consciousness is not manifest, feel whether they are a source of sorrow or joy. To live and grow, they necessarily need to be surrounded by people whose eyes, whose hands, whose voice make them understand: "We love you," "You matter to us," "We trust in the beauty hidden in your heart."
Yes, more and more, we must testify that our brothers and sisters, even those who cannot show any sign of intelligence, are not limited in their relationship with God—or are less limited than we are, so burdened by pride and presumption. The life of God in our son, we can only sense it; but every gesture of tenderness can make it grow, because it awakens in him a heart of love to which God can give himself without obstacle.
Sharing the burdens of others can lighten our own
A mother once told me: "To answer the silent cry of my son, I had to step out, in a way, from my own suffering—though it never truly goes away. Everything changed the day I understood that when I wept, I wept for myself, because my son does not need tears: he needs smiles and songs." But alone, we know well, it is almost impossible to overcome sadness and bitterness. We must try to build bridges, to draw near again to neighbors and friends, many of whom have withdrawn not from indifference but from fear of being clumsy, of hurting you. We must reach out to other parents facing the same trial. Sharing the burdens of others can lighten our own.by Marie Hélène Mathieu, 1986