"At the hospital, right after Luca was born, a doctor with little sensitivity spelled out the diagnosis to my husband and asked him who he wanted to place the baby with. My husband, deeply shaken but clear-headed, said he was taking his son home"...
"What does Faith and Light mean to me? So much: first, our young people themselves; their parents, who face the same struggles I do; and then our dearest friends, who gave me so much courage and still take Maurizio to camp—I hope they always will".
It took him to make me understand
Luca is my six-year-old son with Down syndrome. He was born three years after the sudden death of my fifteen-year-old son in a car accident on his way home from school.
I'm writing to help other parents who may find themselves where I am.
At the hospital, a doctor with little sensitivity spelled out the diagnosis to my husband and asked him who he wanted to place the baby with.
My husband, deeply shaken but clear-headed, said he was taking his son home. A week later—during which I'd been nursing him without noticing anything—my husband told me. I felt I was dying. But then I pulled myself together and said we would do everything we could for him. We were referred to the CEPIM center in Genoa (at Galliera Hospital on Via Alessandro Volta), and so began my journey back and forth between Parma and Genoa every three months.
Luca was two months old when we started. I found tremendous understanding and help. They did physical therapy and gave me a program to follow at home—it helped me track my son's progress too. Most of all, they gave me hope.
I also began traveling to Milan for nutritional support.
Then my husband got sick—the kind of illness that takes no prisoners—and he died when Luca was fourteen months old. My only comfort were the baby and my parents, who were truly wonderful.
It was around then that I met the friends of Faith and Light. Their friendship held me up through the darkest moments and still helps me today. To give me a break from my grief, they encouraged me to attend a year of school to earn my middle school diploma, hoping it would lead to work that left me more time with my son.
But I still work in the factory, though I've managed to improve my hours. I enrolled Luca with the local health service to continue the treatment I'd been following with the Genoa program. A speech therapist and educator saw him once a week. After about a year, I realized it wasn't enough—he wasn't making the progress we needed.
My friends advised me to reach out to a private center: CESAS (the Emilia Regional Center for Social Services and Activities) in Parma, with its main office in Bologna.
I took Luca there twice a week, and that's where his real progress began—real, significant progress. I also took him to a physical therapist.
It cost me time and money. I relied on my mother's help and my companion care allowance.
Luca is a sweet child who tries hard, has a good memory, and everyone adores him.
Starting school was completely normal. He could read, write a little less well, spoke clearly, was socialized, and was welcomed by his teachers (he has a support teacher in the classroom), by his classmates, and by their parents with warmth and ease.
My boy still has a persistent cough and we've lost countless nights because of it—doing aerosol treatments in the middle of the night. In winter we keep a humidifier running constantly.
My message to other parents is this: help your child from the first months of life, never give up, always hold onto hope—even though it demands so much of you.
What has Faith and Light given me? Many friends who share my life. I don't attend the group as often as I'd like—I'm tired, physically and emotionally—and when I do go, I absorb the suffering of those whose children face even greater challenges than Luca.
Now I have a friend who leads our group. He's doing community service and takes my rascal to school in the mornings. He's the only male figure in our lives since my father died two years ago. I'll close with what the father of one of Luca's friends once said: "I thought my son was a curse. Now I understand that it took him to make me see."
- Bruna from Parma
Don't forget about us
I'm Maurizio's mother. Many of you probably remember us. Nearly two years ago we left Rome and went back to our city hoping to start a Faith and Light group in Perugia. But despite Gabriella's best efforts, we haven't been able to get anything off the ground. We Umbrians are skeptical and wary by nature. All I have left are a few phone calls with friends who are always so dear. Some of them have come to visit us, and that means everything. We're always hoping you'll visit again—your visits are always welcome.
As for us, we've made it back to Rome twice for the Festival of Light and the Spring celebration. Both times were unforgettable, and I hope we can go again this year.
What does Faith and Light mean to me? So much: first, our young people themselves; their parents, who face the same struggles I do; and then our dearest friends, who gave me so much courage and still take Maurizio to camp—I hope they always will. Saying thank you doesn't seem enough. When I was in Rome, I'd treat them to dinner now and then. I can't do that now.
There's so much to remember: the gatherings, the celebrations, the end-of-year trips. I could never forget those years we spent together.
The one thing that's stayed with me is Shadows and Light, which keeps me close to all of you. Please don't forget about us.
- Liliana and Maurizio
Send the magazine to these friends
I received the long-awaited Shadows and Light today, at a moment when I'm struggling with deep depression.
In a few days, I'll need to check into the hospital for surgery.
My thoughts turned to you, André Haurine—you, who has never been able to see the Creator's great wonders, yet sing their praises with such joy.
Dear André, let me embrace you warmly and thank you for your living witness of faith, which has helped me so much spiritually. Forgive me for not seeking you out and loving you sooner. I urge you to keep singing God's praises, also for me—I've made poor use of the voice and sight you've given me, Lord.
My thanks too to Mariangela Bertolini for her letter on the first page. The magazine is beautiful as it is; you need no suggestions, guided as you are by the Light.
My only wish is that it could become a monthly publication.
One last request: please send the magazine to seven young doctors, my colleagues (I'm enclosing the amount and their addresses).
- Domenico Mazzilli
The Pope and epilepsy
My name is Renata and I'm part of a Faith and Light community in Rome.
I'm writing to share an article that appeared in the Corriere della Sera on January 12. It reports words the Pope spoke during an audience with the faithful: the Pope emphasized the idea that epilepsy is an illness that can make one susceptible to infiltration by Evil.
You can imagine my outrage—both because I think of all the wounded young people I know, and because in studying psychology and psychomotor development, I had to pass exams with epilepsy as the subject. I ask myself: why would the Pope, who claims to be so close to the smallest among us, to Faith and Light, wound families already suffering—and so many friends?
Why cast doubt, in 1988, on scientific findings that seem firmly established?
I'm reaching out to you partly to vent with people who share many of my values, and partly so you'll know that in the strange world of disability, wounds come even from the most unlikely sources.
I send you warm greetings and my best wishes for the year ahead.
- Renata
P. Cattaneo, national assistant for Faith and Light, replies to Renata's letter - What did the Pope say?