I have known Nunzia for many years now—since her daughter Emanuela, who is now in her mid-thirties, was just six years old and starting first grade.
Emanuela is a disabled girl. Her diagnosis is bilateral temporomandibular ankylosis: she cannot move her jaw, cannot speak, cannot chew, and still has some difficulty swallowing. These problems are compounded by a significant cognitive disability.
Nunzia is a mother who, alongside her family, has faced countless hardships. She has lived through suffering and obstacles without losing her taste for life, her smile, or her trust in others. Now a grandmother herself, she still carries a youthful, pleasant air—so much so that once someone said to her: "Ma'am, is it really true you have a disabled daughter? You look so beautiful!" And yes, says Nunzia, according to some people, mothers of disabled children ought to look sad, dress carelessly, and age prematurely!
I wanted to walk through these thirty-five years with her, pausing on the most difficult moments—the ones that tested her and her family most deeply.
Nunzia and her husband Nando, along with Emanuela, have another son, older by several years. He is the father of a five-year-old boy living in France.
How did you learn about Emanuela's disability, and how did you and your family react?
"I knew right away that my daughter was very ill. She was cyanotic at birth, spent a month in a coma, and they told me she would die. My husband tried to comfort me by already thinking about another baby. In those first weeks, I didn't even visit her because I didn't want to become attached to her. But the moment I saw her, I felt the terror of losing her. She stayed in the hospital where she was born for six months. There, they kept painting a confused and tragic picture—they thought she might be blind and deaf. But the worst part was that the baby couldn't eat, couldn't swallow. Her life seemed to hang by a thread. After six months, we decided to transfer her to the gastroenterology ward at the Polyclinic. They performed a gastrostomy and gave her proper therapy. Emanuela began to improve. Meanwhile, I kept trying to give her drinks by mouth, trying to get her to swallow. When she was three years old, one day she finally swallowed some fruit juice. Right then I decided to bring her home, and gradually she began to eat normally by mouth. The doctors at the Polyclinic could hardly believe I would manage to get Emanuela to feed herself naturally. They said to me: 'What grit you have, ma'am!' But from the moment I accepted her, my daughter gave me strength, and my life changed. I changed: I was shy before, and I became open and resolute.
My husband found it harder to accept her, but he never showed rejection. Our marriage wasn't threatened by Emanuela's presence. I think it was never really changed by it. Ours is a traditional relationship: the father works and leaves the care of the children and home to the mother. But when needed, he was always there.
My husband's family showed affection and welcome from the very start and never stopped. Unfortunately, my own sister gradually distanced herself from me."
How was your experience with the school and local services?
"School placement wasn't easy. I watched carefully over my daughter, so at the start of first grade I noticed she was spending many hours in a small room alone with the support teacher. Even at dismissal, she was kept out of line with the other children. I went to the principal—I was fired up—and asked for an explanation. After some commotion and a few teacher changes, finally a very capable teacher arrived with real commitment. She did everything to help Emanuela stay in the classroom. She was also assigned a thoughtful and sensitive teaching assistant.
With help from the local services, Emanuela managed to integrate well with her classmates, socialize, and make progress behaviorally.
The services I turned to helped me as well. The psychologist in particular supported me through a very difficult time and helped me find my voice again, rediscover myself, and see the problem differently. The social worker helped me face my problems and work through them. Little by little, I reclaimed myself and my various roles—as mother of two children, as a woman, as a wife. I went back to doing things I loved. I started dancing again with my husband, and we would take Emanuela with us."
How did you handle Emanuela's puberty?
"With everything we face, I talk to her first. I prepare her for what's coming.
Emanuela developed early, but I tried to prepare her ahead of time for that too. I would bring her with me to the bathroom when I had my period and show her naturally what I was doing. One evening she came into the kitchen with a package of my pads in her hand. I told her to put them back because I didn't need them. She insisted, took me to the bathroom, and showed me that she had gotten her period.
As for her sexuality, I never scolded her during those moments, but I insisted she go to her room. She never embarrassed me. In fact, she later sought out her privacy on her own.
I always put a lot of emphasis on Emanuela's education. This lets me take her anywhere without problems. She has become quite independent, can spend some time alone, and most importantly, she knows what she can and cannot do. For example, even though she loves sweets, I can leave chocolates or candies in sight and she won't touch them—she knows she can't swallow them."
Did having another son help you with Emanuela, or did it create additional hardship?
"My son Daniele, eight years older than his sister, was definitely a great help to me. He was and still is very attached to Emanuela. He was always very protective of her and learned early on how to care for her. As he grew older, he would often urge me and my husband to go out, offering to stay with her.
He was never ashamed to bring friends or girlfriends home. I have to say he's a special young man. Even now that he lives far away, he's thoughtful toward her, and they remain strongly connected."
Did it cost you to leave work and devote yourself entirely to family?
"I had studied and worked as an employee in a laboratory. But I found it natural to leave work and care for my children. I have no regrets about that. I did pick up a small part-time job once Emanuela started attending the day center, but that work eventually stopped. Still, I'm glad I can follow my daughter closely. I have frequent contact with the center she attends, and I keep an eye on what she does—especially since unfortunately she can't tell me anything. There too, sometimes I don't agree with certain approaches. But since my daughter clearly enjoys going, I believe she's well there. That said, I stand by my views. When a new neuropsychiatrist wanted to prescribe sedatives because Emanuela was a bit agitated during that period, I firmly opposed it and continue to refuse. When she's more restless, I try to distract her and stay closer to her."
Nunzia, have you thought about Emanuela's future? What do you think about it?
"Every summer, Emanuela goes to the beach on vacation with the day center. She's also done Fede e Luce camps. She loves the sea and water in general. She always wants to go and has no trouble separating from us. But I can't imagine Emanuela living outside our home. For as long as I can, I want her to live with us. When I'm gone, I trust my son. I'm sure he'll find the right arrangement for her. I wouldn't mind a family group home like Carro for her, honestly."
One last question: have you had problems with others—friends, neighbors? Do you speak openly about your daughter?
"As I said, I'm a very open and communicative person. I often talk about Emanuela the same way I talk about my other son or my grandson. I don't make distinctions. Emanuela is very discreet and well-behaved, and she doesn't limit my social life. I treat her normally, and she shows she understands everything. I also take care with how she looks, just as I do with myself. I believe that if you present yourself well, you're more readily accepted. I've noticed that in some cases my appearance has influenced whether someone would listen to me—and that's an advantage for my daughter too.
Emanuela has happy eyes, and that's what matters most to me!"
Interview by Rita Massi, 2013