Will it remain just a hope?
I came across your magazine, Ombre e Luci, while waiting in a doctor's office in Bari, and I was struck by the simplicity and directness with which you address disability. The deep humanity that so often gets lost to rhetoric and hypocrisy in other publications comes through here with genuine spontaneity.
I am the mother of Daniele, an 18-year-old with cerebral palsy. He does not speak, has daily seizures, walks with difficulty, and needs care for everything else. The severity of his condition means I am almost entirely devoted to his care, leaving little room for anything else—no real breaks, no time with others, no time for myself. Yet I hold onto one hope that pulls me out of this isolation: the possibility of creating a real association in my town with other parents of disabled children, to push back against the indifference that weighs so heavily on us. Beyond that, I dream of something concrete—designing and building a community residence for disabled people. It would offer temporary care for families who need a break, or who need time for medical treatment and rest. Eventually, it could provide permanent housing for severely disabled adults without parents. Will this hope dissolve into mere fantasy? I don't know. I'm searching—through the experiences you publish in your magazine—for some answer to these questions.
- Maria Carmela Giacobelli
Your letter speaks for many mothers, especially those living in small towns where public and private services barely exist. We truly hope your vision becomes more than a dream, and that you find friends and skilled people to support you. We stand ready to provide you with contacts for communities already at work and organizations you can reach out to.
Such practical guidance
I discovered Ombre e Luci last August on the beach in Sperlonga, my hometown, thanks to Alessandro's aunt. Alessandro is a young man with Down syndrome from Rome who participated in the Pizzoferrato camp in July.
We talked about the problems people with disabilities face, the gaps in public services, and the complete absence of support in Sperlonga. We discussed what families have to do on their own to fill that void.
My nephew Gianfranco is sixteen and a half. His mother—my sister—has been a widow since he was two months old; his older brother was five. Gianfranco has intellectual and motor delay from brain damage at birth. Year after year, he's made slow but real progress, supported only by private doctors and by his family. My sister tried desperately to get him an aide in school, and when she finally got one, it made little difference. The classroom teacher said he should stay home because he "disturbed" the other children.
The hardest part has always been figuring out the right way to be with him. This is difficult without trained people in the family, so everything has depended on my sister's good sense and the improvisation of our relatives.
That's why I found your April-June 1987 issue so valuable—the whole thing, but especially the article "How Can I Teach Him Something?" I realized how much families need this kind of guidance. Not just suggestions, but clear directions on how to behave and what kind of response to expect. It would be fundamental.
The magazine is wonderful. Keep going.
-Elsa Guglietta (Modena)
Thank you for writing
Though I'm late, I'm sending you the addresses of some friends and acquaintances. I hope they all subscribe to your magazine.
As for me, the magazine is put together beautifully. I'd like to know if there are any Faith and Light communities closer to us—in the Bergamo area. If so, would you mind sharing an address?
Thank you for the moments of reflection your magazine has given me as a mother of a disabled child. If I had known about you earlier, those first difficult years with Alessandro might have been easier.
Now the three of us—my husband, Alessandro, and I—have a deeply satisfying family life. I owe some of that gratitude to the firsthand stories you publish.
This is my first letter to a magazine, and I apologize if I haven't expressed myself well.
-Marta Caldara Moroni
Thank you for the addresses (we hope others will follow your example!), and thank you for the courage to write your first letter to a magazine. We are asking the leaders of Faith and Light communities in Lombardy to reach out to your family and welcome you into one of their groups.