As the father of Gianluca and two other daughters, I need to set out some context before I can properly answer this question and be fair to readers unfamiliar with our story.
Gianluca was born eleven years ago in Belgium, where my family and I were living at the time for work. He was a healthy baby, and for his sister Sofia, who was just over two, having a little brother was wonderful.
Then came the illness. Five months later, Gianluca was suddenly diagnosed with West syndrome. For my wife, our daughter, and me, it was a genuine catastrophe. I could not have imagined that my son would fall ill with a syndrome I had never heard of—and one that specialists told us was extremely grave.
I mention where Gianluca was born because, even though Belgium had good medical facilities and we knew people there, we suddenly found ourselves without the safety net most families rely on: grandparents, aunts, uncles, cousins. We had no one nearby to turn to for help or comfort in our crisis.
Gianluca's hospital stay stretched on for months. The experimental treatments took weeks to work, and by then West syndrome had caused serious brain damage. Already defenseless from his medications, he developed complication after complication. Even after he came home, his chronic weakness meant repeated emergency admissions. The medicines and therapies available at that time saved his life more than once.
I call it a catastrophe for two reasons. First, we were facing a disease known only to specialists—a disease I could not explain to a suffering infant or ask him about. Second, we had to navigate impossible decisions: Should we travel to specialists in other countries? How could we move for weeks with a gravely ill baby while managing work obligations and caring for our other daughter, who turned three in the hospital where her mother was essentially living with her brother?
My wife and I experienced Gianluca's illness very differently. Perhaps because parental roles are not the same, or because a mother's attachment to her children differs from a father's.
Gianluca's illness held us together, but it sent us down parallel paths.
It took me much longer than my wife to understand what was happening to him—a full year, coinciding with a specialist visit to London. As for accepting it: that took far, far longer still.
What I've just said only partly answers your original question. The balance in our marriage shifted after Gianluca's diagnosis, and time alone together became rare. I failed to give my older daughter the attention she deserved, though I tried to make it up to our youngest, Francesca, who is almost seven now. I also spent considerable energy on myself, at the family's expense. Part of this was selfish, I know, but it was also necessary—a way to recharge and survive the difficult stretches that came daily at first and have since become more manageable and easier to plan for. I recognize that my situation is different from families in less privileged circumstances, especially in Italy where support structures are so inadequate. Let me be clear: spending a full day alone with Gianluca leaves me emotionally fulfilled but completely exhausted. I could not manage several days with him without another person's help. Still, I try to set aside vacation days for each of my children, Gianluca included. I take him to see friends, and I'm struck by their kindness and understanding. It helps that despite his severe communication difficulties, Gianluca always reaches out to others and is deeply affectionate, behavioral problems aside.
I want to end by asking a different question: How should a father react when he discovers his child is severely disabled? There is no easy answer. I have seen marriages collapse, families torn apart, fathers run away. But I have also seen families grow stronger and more united.
Last year a film called The Keys to the House showed something important: a father's reaction to this crisis is very different from a mother's. A mother has already carried her sick child inside her for nine months, and she may find it easier to develop a "natural" relationship with a disabled son or daughter.
Yet no one is ever prepared for what often becomes a catastrophe. I believe—and I was not one of those fathers who managed this—that asking your wife for help might be the beginning of facing a genuine problem. And that problem has one unexpected gift: it makes the real values of life suddenly visible.
Giovanni Adorni Braccesi, 2005
