You may know that stretch of the Aurelia highway along the Tuscan coast between Pisa and Livorno. I love it deeply: it's an ancient road that winds and rises and falls with the contours of the coast, never trying to tame it. From that road, the sea is close. The horizons stretch out, deep and distant. You catch glimpses of paths leading down to the water—paths you'd want to walk. In summer, there's a whole parade of beachgoers, parking wherever they can and heading down with umbrellas and towels.
I'd passed that stretch many times, and each time I'd think: "It would be beautiful to stop and look at the view." But the need to get where I was going always won out.
This time, finally, we stopped. We sat at a bar on a terrace that hung out over the sea, looking straight onto the horizon. The sun was bright. Monica held Caterina in her arms and tried to get her to look at the landscape. "Caterina, do you see the sea? What do you see, Caterina? What do you think? Can you recognize me? Do you love me? Are you happy?"
We were there because Monica and Caterina had just completed a week of hospitalization at the Stella Maris Institute in Pisa. "We need to run some tests," the doctors had told us. CT scans, evaluative assessments, hearing checks—on and on. I did my best to follow what the doctors were saying, to understand. But inside me a voice kept saying: I don't want to be here, I don't want to be here. And those visits always left me more confused and more afraid. "Maybe it's this, maybe it's that. We don't always reach a diagnosis. In time you'll get used to it." What stayed with me more than the doctors' words were the looks on other parents' faces in the waiting rooms.
Caterina's diagnosis came gradually. But already by the fourth or fifth month, Monica and I could tell something serious was wrong. We just had to find out what.
Caterina's diagnosis came gradually. But already by the fourth or fifth month, Monica and I could tell something serious was wrong. We just had to find out what. So we started making the rounds—doctors, specialists, and within a short time I felt completely lost. If Monica hadn't held things together, I don't know what would have happened to me. That day facing the sea, I think I truly grasped what was happening.
When I left them at the Pisa hospital to go back to Luca and Saverio, I felt something I'd never felt before. Leaving them there, in that place so unwelcoming. I kept saying to myself: It's too much. I can't even think about it. Alone in the car, I felt guilty, afraid, and helpless. You want to be able to fix everything for your wife, for your daughter. But I didn't know what to do. Normally we think of the hospital as a place where you go to get well. Doctors and medicine are a necessary interruption—something you pass through as best you can and as quickly as possible. But this was different. It would have been a lot if they could just tell us what Caterina had and what to expect. Nobody was talking about "solving" the problem anymore.
I can't describe how I felt. I didn't know what to hope for. No one to blame. No one to be angry at. No one who could change what was happening. Looking at Monica and Caterina, so beautiful together and framed against the sky and sea, I felt guilty too: Was it right that I felt this way? What did Caterina have to do with my fear? Why shouldn't she have a happy, enthusiastic father like children ought to have? The memories from that period are jumbled.
So many new things of every kind had swept over us, and it took time to find any balance. In those months my goal was to learn to be happy about Caterina. For me, that wasn't simple: how do you feel happy about your daughter when there's a disease within her that no one wants to be there? I think I started with her. I remember thinking: if she's happy and at peace, then everything is all right.
When I held her in my arms, she would lean on my shoulders with a trust that was total and unconditional, and somehow that gave me courage and calm. All my worries would fall away for a while. "Maybe I'm good for something," I'd tell myself. Caterina grew, and with her brothers she took her small, large steps forward, and each one gave us a satisfaction like no other. Gradually I stopped focusing on what she couldn't do and started to enjoy the deep satisfaction of what she could.
I learned from Monica, who always pushed me not to underestimate Caterina's abilities. But I also learned from Luca and Saverio, who taught me to see Caterina as simply their sister—sometimes annoying—and not as a piece of crystal I might break. When children are born, family life changes enormously. Parents have to learn to be together differently. The birth of a daughter like Caterina changes things even more. At first it seems you're just making room for the newcomers, squeezing closer together. But that's not it.
It's not about stepping aside and crowding in. It's about trying to change how you are together, I think. The experience of Faith and Light was deeply important to me. It was help of a kind that wasn't professional—truly providential. And that's what I believe is at the heart of the stories Ombre e Luci tells. It's about knowing and being near other people who have lived and are living stories like yours. It's about seeing in the witness of so many friends that our Lord loves us for who we are, that he trusts us, that he's not in a hurry, and that he respects and understands our doubts. That each of us carries something precious inside, waiting to be discovered. That pain can't be explained but can be shared, and that sometimes laughing about it makes sense.
My mind is still very torn even now. I don't know what our future will look like, with all its uncertainty, doubt, and fear. I'm sure you know how I feel. But I have to say that many of the good things I've found, and will find, have come and will come partly through Faith and Light.
I've often thought of my cousin Chicca and my aunt and uncle Mariangela and Paolo. Sometimes I feel as if some of the "open doors" we've walked through were "opened" by them—people who must have walked where we're walking now. Thinking about it, I realize that many of the obstacles they faced simply aren't there anymore because someone moved them. And there's a deep, important gratitude for those who came before us. I find myself thinking of Chicca, and I feel that she's watching over Caterina. When I see Caterina withdraw, staring at the kitchen wall tiles or doing something strange, I think that Chicca is there with her in that moment, that she has a hand on Caterina's shoulder. That she's protecting her. My daughter has a guardian angel who will always be at her side, who loves her and understands her.
Now I watch my children grow in what looks like creative chaos. Caterina, Saverio, and Luca. I feel happy and proud of them. And I feel all those feelings that parents feel watching their children get ready for the moment when they'll take flight. I imagine we'll face difficulties. Perhaps there will be moments when I struggle to find hope and trust. But in the end, I believe each of them will find their own way, and we'll be there beside them as long as they want us and as long as we can be. And I don't think I can or should be able to solve every problem. And I feel I can go back to that terrace and watch the sea and enjoy the view. There are still so many wonderful unexpected vistas to discover.
by Tommaso Bertolini, 2014
English version: A view to rediscover
