Father, mother, and daughter navigate the same situation, but in a way that struck me as particularly thoughtful and exemplary. I called this father for a long conversation. His young wife has multiple sclerosis, and they have a ten-year-old daughter together.
When did the illness appear?
My wife started having problems right after our daughter was born, during nursing. We feared cancer, but it turned out to be multiple sclerosis. We were almost relieved by the diagnosis, partly because at first we didn't even know what the disease was.
You have a ten-year-old daughter. What have you told her about her mother's illness, and how did you approach it?
In the early years, there wasn't much to explain. We started telling her things when she was six, but even now she doesn't know all the details. She knows that her mother can't do certain things—can't run around with her, go to the beach. She knows her mother has medical visits for treatment, and does physical therapy and acupuncture to feel better. We try to surround her with as much calm as possible, so she experiences the illness almost like a cold, something that's always been there. We've never lied when she asks questions, and they do increase as she grows older. But we don't want to traumatize her either. We're careful not to expose her to daily treatments, for example. It's important to explain things gradually and naturally, with help from psychologists and social workers—and we've found them to be excellent. Sometimes she's afraid her mother might die, but we're ready to reassure her.
We're careful not to spoil her and to give her a "normal" education. We're followed by psychiatrists and psychologists at the Rome hospital, and we're in very good hands. Are you supported by family and friends?
Some people, even family, pulled away in the early years, but we have plenty of people close to us. Our parents are a great help, particularly my father. He's helped me not just financially but above all with moral support and his way of living.
How do you organize your family life?
Family is the most important thing to me, and it led me to a big decision four years ago. I left my job to be closer to my wife and daughter. A lot of people didn't agree with that choice, but I've never regretted it.
I'm essentially a volunteer at home, and I do it because I love my wife and daughter. It seems like the most natural thing in the world. It's not about earning more money—it's about being there for them. And for my daughter, it makes her mother's illness more bearable. She can turn to me when she needs something.
My wife gets a disability pension from the municipality, and I do freelance work as a surveyor.
You have to be brave, certainly. We have our difficult moments too. But in the end, I think my choice was the right one. Disease can flatten mountains, but love can rebuild them.
Of course, in Italy you always have to fight to get the bare minimum. My wife wouldn't be able to do that, so I do it.
How do you manage free time and vacations?
We married young and were never big travelers. Now we can only take short vacations near home.
Friends and relatives describe you as vibrant and joyful. What's your secret?
My father used to say: you have to be well yourself, then everything else works out. If I suffered from having left steady work, I wouldn't be at peace with myself. Then my wife and daughter would feel that unhappiness too. But peace and love for each other and for family—that's really what it comes down to. So many children barely see their fathers except at night. So many women are alone and separated. I have everything I want: we're a very close family. q
Why?
I was deeply moved by the article in issue 65, where Manuela Bartesaghi reported on a long talk by Pierangelo Sequeri about how to approach people with disabilities and their families—about what words to say, or better yet, what not to say in certain situations. It was ILLUMINATING and touched me deeply.
I've been part of Faith and Light for many years, and I believe that anyone like me—who has formed friendships and maintains relationships with young people and their families—has often stood before great questions they couldn't answer. These are the "WHYs" of our human limitation: we want to know the ultimate reason for such great suffering, and we cannot find an answer.
"Why did this happen to my son?" "Why to my family?"
I have been struck by suffering myself and have walked through great pain with others. I can say this: no words are enough. No words hold an answer to that question—none, not even God's words in the Gospel.
In such moments, we shouldn't strain to speak. We should be a living presence of love and friendship for these families and their children. We should have the courage and love to stay beside them, look them in the eye, and say "I don't know"—giving up the ready-made phrases that may make us feel better for a moment, but that give no answer to the questions these people are asking. Let us help them instead toward HIM who answered these questions with his life.
A friend