You may know that stretch of Aurelia along the Tuscan coast between Pisa and Livorno. I like it very much: it is an ancient road that, with curves and ups and downs, follows the course of the coast without wanting to tame it. From that road the sea is close and the horizons are deep and distant. You can sense paths that descend down and that you would want to walk along. Then in summer there is a whole entertaining movement of bathers with unlikely postings down to the sea with umbrellas and towels.
I have passed by that stretch of road many times on my travels and each time I thought, “It would be nice to stop and look at the scenery.” But the need to get there always won out.
Finally this time it did. We stopped at a bar with a terrace overlooking the horizon. It was sunny. Monica is holding Caterina and trying to get her to look at the view. Caterina do you see the sea in front of you? What do you see Caterina? What do you think? Are you able to recognize me? Of loving me? Are you happy?
We were there because Monica and Caterina had had to do a week-long hospitalization at the Stella Maris Institute in Pisa. “You have to do a series of checks,” the doctors had told us. CT scans, evaluation tests, hearing checks etc. etc.. I was doing my best to follow the doctors, and figure it out. But inside I could hear a voice telling me: I don’t want to be here, I don’t want to be here… And the result of those visits was always great confusion and growing fear. “Maybe he has this, maybe he has that other, you don’t always arrive at a diagnosis, in time you will get used to it….” I was more impressed with the looks of the parents in the waiting rooms than the words of the Doctors.
The discovery of Catherine’s pathology was gradual. But already by the fourth to fifth month it was clear to Monica and me that something was seriously wrong. It was a matter of finding out what
The discovery of Catherine’s pathology was gradual. But already by the fourth to fifth month it was clear to Monica and me that something was seriously wrong. It was a matter of finding out what. Thus began a round of doctors and specialists in which I quickly felt completely lost. And if my wife had not been there to pull the strings I don’t know what would have happened to me.
That day in front of the sea I think I really realized what was going on. When I left them at the hospital in Pisa to go back to Luca and Saverio, I felt like I had never felt before. To separate, to leave them in that very inhospitable place. I said to myself: it’s too much for me I can’t even think about it. Alone in the car then I felt guilty, afraid and helpless. For a wife, for a daughter one would like to be able to solve all the problems. But I didn’t know what to do. Normally we are used to going to the hospital to heal. Doctors, medicines are a necessary parenthesis but to go through in the best way and in as little time as possible. Now the subject was changing. It would already have been a lot if they had been able to tell us what Catherine had and what we should expect. Solving the “problem” was no longer being talked about. How I felt I really cannot describe it. I didn’t know what to hope for.
The discovery of Catherine’s pathology was gradual. But already by the fourth to fifth month it was clear to Monica and me that something was seriously wrong. It was a matter of finding out what. Thus began a round of doctors and specialists in which I quickly felt completely lost. And if my wife had not been there to pull the strings I don’t know what would have happened to me.
No one to blame, no one to get angry with. No one who could change the situation. Looking at Monica and Caterina, so beautifully united and silhouetted between the sky and the sea, I also felt a sense of guilt: is it right for me to feel this way? What does Caterina have to do with my fears? Why should she not have a happy and enthusiastic dad as parents should be?
Memories of that period are hazy. So many new things of all kinds had overwhelmed us, and it was some time before we regained a little balance. My goal in those months was to be able to be happy with Catherine. It was not easy for me: how can you be happy with your daughter if there is pathology in her way of being that no one would want there to be?
I think I started with her in the first place. I remember thinking: if she is happy and peaceful everything is fine. When I would pick her up, she would abandon herself on my shoulders with total and unconditional reliance that, I don’t know how, gave me courage and serenity. All my worries for a little while receded. ” Maybe I’m good for something”-I told myself.
Catherine was growing up and together with her siblings was taking her little big steps forward that gave us a very special satisfaction. Gradually I began to stop focusing on what she was not doing to enjoy the great satisfaction of her achievements. I learned from Monica who always pushed me not to underestimate her abilities. But also from Luca and Xavier who led me to see Catherine as a simple sister who was sometimes a pain in the ass and not as a crystal glass not to be broken.
In a family, the birth of children changes a lot. And parents must learn to change the way they are together. The birth of a daughter like Catherine ends up doing that even more. At first it seems that it is just a matter of moving to make room for the newcomers. But it isn’t. It’s not about stepping aside and being tighter, it’s about, I think, trying to change the way we are together.
Certainly the Fede e Luce experience has been very important for me. It was a help, of a non-professional kind that was really providential. And that is then what I think is at the heart of the stories that Shadows and Light tells. It is about knowing and being close to other people who have lived and are living similar stories to yours. It’s about having seen in the testimony of so many friends that our Lord loves us as we are, that he trusts us, that he is not in a hurry, and that he respects and understands our uncertainties. That each of us has something precious within us to discover. That pain cannot be explained but can be shared and that laughing about it sometimes makes sense.
Of course my state of mind is still very mixed today. I really don’t know how our future will be with all the uncertainties, doubts, fears. And I really think you know how I can feel. But about this situation I have to say that of the positive things I have encountered, and will surely encounter, many have been and will be such also because of F&L. I have often thought of my cousin Chicca and my aunt and uncle Mariangela and Paolo. Sometimes I get the impression that some of the “open doors” we went through were “opened” by them, that they must have passed where we are passing today. And in making comparisons, I get the feeling that many of the obstacles they must have encountered are gone today because someone moved them. And there remains a deep and important sense of gratitude for those who have gone before us. I happen to think back to Chicca and feel that she has an eye on Caterina. Sometimes when I see Caterina isolating herself, looking at the tiles on the kitchen wall or doing something strange I get the feeling that Chicca at that moment is there with her and putting a hand on her shoulder. That he is protecting her in short. My daughter has a “guardian angel” who will always be there for her, who loves her and understands her.
Now I see my children growing up in uncontrolled creative chaos. Catherine, Xavier and Luke. I feel happy and proud of them. And I have all those feelings that parents have when they see their children preparing for the moment when they will take flight. I imagine that we will encounter difficulties and perhaps at some moments I will struggle to find hope and confidence. But in the end I do believe that each of them will find their own way, and we will stand by them as long as they want and as long as we can. And I don’t think I can and should be able to solve every problem.
And I feel that I can go back to that terrace to see the sea and enjoy the scenery. That there are still so many wonderful unexpected views to be discovered.
