How do you preserve balance in a marriage and with other children when one child is severely disabled? As the father of Gianluca and two daughters, I need to set the context before I can answer this question fairly for readers unfamiliar with our situation. Gianluca was born eleven years ago in Belgium, where my family and I were living for work. At birth, he was healthy. And for his sister Sofia, who was just over two, having a baby brother was a joy.
Five months later, everything changed. Gianluca was suddenly diagnosed with West Syndrome. For me, for my wife, for our daughter—it was catastrophic. I could not imagine my son falling ill with a condition I had never heard of, and one the specialists told us was extremely grave. I mention where Gianluca was born because, despite having contacts in Belgium and access to world-class hospitals, we suddenly faced a particular isolation: we lacked the safety net of extended family—grandparents, aunts, uncles, cousins—people we would normally turn to for help and comfort in such circumstances. Gianluca's hospitalization lasted for months. The therapies eventually worked, but only after weeks had passed, and by then West Syndrome had caused severe brain damage.
In the hospital, Gianluca's immune system destroyed by his medications, he suffered countless complications and infections. Even after discharge, his chronic weakness meant repeated emergency admissions. In some cases, only the medicines and therapies available then saved his life.
I call it catastrophic for two reasons. First, because we were fighting a disease known only to specialists—impossible to ask a suffering infant how he felt, impossible to make him understand how much we loved him. Second, because the context itself was unbearably delicate. How do you decide whether to travel to specialists in other countries when the clinical picture is complex and doctors disagree? How do you travel for weeks with a gravely ill child when you have professional obligations and another daughter who needs you—a daughter who celebrated her third birthday in the hospital where her mother essentially lived alongside her brother?
My wife and I faced Gianluca's illness very differently. Perhaps because parents' roles are not identical, or because a mother's and father's bond with their children differs. Gianluca's illness kept us together, but we traveled largely parallel paths. For me, understanding his disease came much later—perhaps a year later, coinciding with a specialist visit to London. Accepting what was happening to my son took far longer still.
This only partly answers the original question. Our marriage was never the same after Gianluca became ill. We had almost no time alone together. I could not give my older daughter the attention she deserved, though I tried to make it up to our youngest, Francesca, now nearly seven. I also gave much time and energy to myself, at the family's expense. That was partly selfish, but also necessary—a way to recharge and endure the daily crisis that, while less frequent now, still comes. I realize this only works in a secure environment. In Italy, where support systems are inadequate, a father alone with Gianluca for a day faces exhaustion by evening. I could not manage days alone with him without help. Still, I try to spend some vacation days with each of my children, Gianluca included.
When I take Gianluca to see friends, I notice their kindness and understanding. This helps because despite his severe communication difficulties, Gianluca always seeks contact with others. He is very affectionate, despite some behavioral challenges.
I want to end by addressing another question: how should a father react when he discovers he has a severely disabled child? There is no easy answer. I have seen marriages fail, families collapse, fathers abandon their children. But I have also seen families unite and grow stronger.
Last year a film called "The Keys to the House" showed something important: a father's reaction to this crisis differs greatly from a mother's. A mother has often carried her sick child for nine months in her body, and may therefore find a more "natural" relationship with a disabled son or daughter. Yet no one is ever prepared for what becomes a tragedy. For a father—and I was not one of these—simply asking his wife for help might be the beginning of facing an authentic crisis that nonetheless holds something precious: a clearer view of what really matters in life.
by Giovanni Adorni Braccesi, Ombre e Luci no. 92, 2005
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