These fifteen years have been hard
We share here excerpts from a long letter that Immacolata wrote to Mariangela—and to all of us. Our readers know Immacolata already: she is the mother of Francesca, a fifteen-year-old girl with multiple disabilities. Here she tells us of recent events: a visit to Bosisio, where doctors at the Institute "La Nostra Famiglia" examined Francesca and studied her condition, hoping to find a new treatment for her spine and other sources of suffering; a visit to the Cemetery of San Giuliano; and finally, her broader reflections on life—her own and her family's...
"Hi Mariangela, how are you all? I've just sat down this evening—it's 11 o'clock as I write—and I haven't stopped moving all day. I'm writing to tell you that my time at Bosisio came to nothing, because there's nothing new they can do for Francesca. Her spine either needs surgery or a brace worn eighteen hours a day. My only comfort during my stay was hearing "my compliments, ma'am" from everyone: the supervising doctor, the dietician, the speech therapist (for the way I was feeding her). Everyone complimented me—the head nurse too—on how well Francesca is, her weight (she weighs 36 kilos and needs to weigh 36), how well I care for her. The dietician said I'm one of those cases you meet once in a hundred—I don't feed her commercial baby food. The one real piece of advice they gave me was how to get her to drink more, because she was drinking very little. Now I can get her to drink two glasses of fruit juice a day using a syringe without the needle. I've decided I'm not taking her anywhere else now. I'm stopping here in Ancona. Francesca is followed by the Neuropsychiatric Center here, and that's enough. This whole new hospital stay cost me a thousand euros, maybe more, but I spent it well. I just hope someone up there opens a few doors for me, because it's getting harder and harder to go on.
Do you know what increase Francesca got? Six euros a month. (I'd be ashamed—I'd have Berlusconi live in these conditions for a month and then we'd see how much the disability allowance would go up for cases this severe.) Since Francesca hasn't turned eighteen yet, she only gets the care allowance of 436 euros a month. On December 7th I turned forty, and I thought about these fifteen years I've devoted to Francesca. They've been hard, and I hope the next ones will be easier.
On Epiphany, my family and I went to San Giuliano—the village that was so cruelly struck by the earthquake in 2002. I live in Guardialfiera, not far from there, just thirty kilometers away. I was shaken by what I saw. At the cemetery I wept—not only for those children, but for Francesca too. I can't explain why, but there were two mothers sitting across from each other in front of their children, as if time no longer mattered. I wanted to embrace them, but I didn't have the courage. The grief was so visible you could have cut it with scissors.
I said a prayer in front of those little angels, and I prayed that I also have two angels at home, and I hope I never feel a sorrow so deep when my angel's day comes. I don't think I'll have the strength those mothers have. I don't know if I've managed to tell you what I feel and what I'm living through right now. I'll close now and embrace you all. Goodbye.
Why do we give so much space to Immacolata's letter? Because, in the judgment of all of us editors, her words speak louder than any good Sunday sermon.
Immacolata
Hui-ling: Care for the Disabled in China
Dear friends,
every now and then we hear from each other and exchange the most beautiful wishes—and it happens not "by chance" but precisely when Christmas draws near. No matter how we are or where we are, living next door or in China, as we approach Christmas we feel more united, and in each of us a great longing for peace and love reignites. But what is divine about Christmas?
Yes, it is true. Christmas calls to mind and lets us perceive that great event: God becoming human, making himself known, becoming incarnate in a reality as familiar and social as ours, living it with all its dramas and joys, its traditions, longings, and innovations. His life becomes a ray of light for us, a model to imitate, a person to follow, a gospel—good news—to proclaim.
I am in Canton, in southern China, and I work as a staff member in an organization called Hui-ling that strives to give concrete help to children, youth, and adults with mental disabilities. The organization has grown to Xi'an, Xining, and Beijing, and now reaches hundreds of disabled persons. Eight years ago I came to them as an expert in computer science and multimedia and educational programs for autistic children. But gradually, the way I work and live has shaped many people: staff, parents, disabled persons, Chinese friends who are not Christian, and even some local Catholics. Now they see me as someone with a special spiritual gift, someone who gives courage and hope in facing the problems of each day. What I try to share is this: although life can look like one endless problem, what really matters is not solving every problem. What matters is knowing that every gesture, in this present moment, can be expressed with love and with joy. Only then is life truly Life. How do we do this? We must return to meditating on the intentions of the one who invented Life itself, who even chose to let us perceive that great event: God becoming human, making himself known, becoming incarnate in a reality as familiar and social as ours, living it with all its dramas and joys, its traditions, longings, and innovations.
When disabled children pass by the open door of my room and slip inside looking for a caress or an embrace that lifts them up, or when disabled young people return from the workshop and see me and try to exchange a vigorous greeting with a handshake, or when older persons with severe disabilities meet my eyes and receive a friendly smile—in that moment, in the "now," there is love and a joy that radiates celebration through our life, and it echoes the Christmas message: "Glory to God and peace on earth" (Luke 2:14). This is the wish I extend to all of you, joined with fervent prayer to the One who out of love became one of us.
Thank you for your meaningful and beautiful magazine. In brotherhood,
Father Fernando Cagnin Hong Kong
"The Voice of the Moon"
We call your attention to a program discussed on Radio 3 on December 13th (Saturday) in the segment "CHOICES," hosted by Patrizia Todaro. You may already know of it, but based on what I heard on the radio, I think it's worth learning more about.
The program was about "The Voice of the Moon," a day center in partnership with local institutions, run by ANNA BERNI in Rome. The project centers on a theatrical production to which everyone contributes according to their abilities—mostly people with mental health challenges. There are those who prepare for acting, but also a tailoring workshop for costumes, lighting and sound technicians, publicity coordination, and so on.
The goal of the director is to use this workshop as a springboard to place these people in real employment according to the skills they've developed. Too good to be true?
Maria Rosa Ciampi
Can any of our Rome readers send us precise details about this initiative?
Beatitudes of Chennai
Dear brothers and sisters,
we recently received a container of supplies from Italy sent by our supporter group ABC Friends of Beatitudes of Chennai. The coordinator, Eng. Giuliano Rossi, a dear friend of mine, let me know about the articles that you at Ombre e Luci generously donated. We are now cataloguing the specialized wheelchairs and strollers for older disabled children, computers, regular wheelchairs, and much more. We will use these items, trying to draw the greatest possible benefit from them.
How many physically and mentally disabled persons we have here! All very poor and without any assistance. Who will think of them? Many drag themselves through the streets in desperate search of food as long as they are able. The little we can do for some of them is nothing against the sea of misery that surrounds us.
Jesus must grow in this distant land of ours. Only he can bring good to these forsaken people, through the action of believers. The institutions here do not think of the weakest, because their god does not know Jesus incarnate, dead and risen for us. Let us pray.
I know of your Christian action on behalf of the handicapped, and I sense how much the Lord loves and blesses your work. All the good you do and all the good you receive in giving yourselves must be witnessed with all your heart. Many may be saved through your action. God bless you.
Father R. Tarcisius sdb Chennai India
Patrick
Many friends came to know Patrick Thonon during the founding years of Faith and Light. He visited Italy often, with Father Roberti, and stayed in various homes, at camps in Alfedena, on pilgrimages to Assisi.
Patrick entered the peace of the Lord at age fifty, on October 24th, after a serious illness that he bore with courage, without complaint, for three long months. He left behind his beloved parents and his fraternal friends at the Toit in Brussels in great sorrow.
We wish to remember him to our Italian friends by sharing some words that his father spoke at his funeral.
"...You were a joyful child, an adolescent without problems, and yet you could not walk, run, or play. You could do none of the things children and teenagers enjoy. You spoke with difficulty: only those who knew how to listen truly understood you. ...Whenever you saw someone, even a stranger, you sought to make a connection, drawing on the human warmth you possessed in abundance. ...You won for yourself a great number of friends—genuine friends, those who help and stand by you in adversity. ...Despite your fifty years, you kept the virtues of childhood, the very ones Christ asked of his disciples. ...Now it is for you to watch over us. You are in peace and joy, in a place where there is neither suffering nor disability..."
Many of us owe him much, and perhaps without him, Faith and Light would not have found the strength and enthusiasm to begin its journey. Thank you, Patrick.
M.B.