I have two older brothers with muscular dystrophy and two younger sisters. For as long as I can remember, it seemed perfectly natural that my brothers didn't run like other children, that they struggled to climb stairs. It was as normal as the universe itself.
My first sadness, my first real fear, came from a few words overheard during a conversation between my parents in the next room. I didn't understand exactly what they were saying, but I grasped that they were talking about me—comparing me to my brothers. The word "symptom" kept coming up. After that, I lived with the dread that my strength, my agility, might fade the way theirs had. I was terrified of it. And ashamed of my terror.
Later I learned that every family faces some trial.
Later I learned that every family faces some trial.But there were other moments when I felt uncomfortable being the strongest, the most vigorous one—even though I was the youngest. I would hold back from a feat or force myself not to run at my natural speed: I kept myself below what I was capable of. My parents must have sensed what I was feeling. I can never thank them enough for refusing to accept that restraint. Instead, they pushed me to grow in every way. They encouraged me to do everything a child my age should do, and I never felt obligated to live as my brothers did. Perhaps that's why I never left home. Besides, I loved my brothers too much. I was happy to help with everything their illness required—pushing wheelchairs, countless tasks. It felt natural to me.
My sisters seemed more weighed down by sorrow, especially once they realized that having children carried the risk of passing on the disease. In a sense, I was the only one to pass through the tragedy unscathed—neither afflicted nor a carrier, since the disease runs only through women. But then there was something harder to bear: other people's pity. Often the only escape is to distance yourself. The friends who stayed are the ones who see us for who we are, not through the distorted lens of being "the family with muscular dystrophy."
Later I learned that every family faces some trial.
Every person carries a cross—visible or hidden, secret or known to all. I think this taught me a kind of respect for every person, especially those the world despises. What hidden sorrow lies beneath their misery!
I also believe that my family's particular burden taught me fraternal service—not as duty but as something almost instinctive. And very early on, I saw death face-to-face in the families of other children with the disease that we knew. I understood then that life is short, whether it lasts seventeen years or seventy. So why cling to this earth as though we'll be here forever? My brothers—especially Benedetto, who returned to the Lord after great suffering, and who gave us such light through the way he bore his pain—taught me that what matters in life is not its length, but what we do with it.
by Gianluca, 1985
(O. et. L. n. 38)