Abstract

In lieu of an abstract, here is a brief excerpt of the content:The Courage To LiveAntonella ColaceI am not the patient. I have not received an organ. I am her mother; I am a shadow patient. My responsibility was to make decisions about a gift for my one-year-old daughter in the summer of 2007. A liver.Elisa had a hepatoblastoma. After chemotherapy, the tumor might have been removed, but in the final stages of the work-up a portal vein malformation necessitated a transplant. The medical team at a hospital in northern Italy informed us of the intervention.So many words! Trying to understand what they were saying seemed like a lost cause to me, but I quickly realized that these were people I should trust blindly.These medical team members, by the end of the experience, would all become part of my family. They embraced us in their capacity as professionals and as human beings. I never felt alone or excluded.How many times late in the evening I heard a soft knock at the door of Elisa’s hospital room and behind that delicate touch, I found her doctor ready to leave for home, but not before one last [End Page 131] recommendation for his little patient and a wish of peaceful sleep.The relationship between health workers and the family has developed into an effective relationship of communion and understanding, which has often translated into affectionate terms in communicating with each other. They asked me: “Mom, how is Elisa?”..... Yes—mom!These highly trained medical experts have understood that a parent can sometimes somehow discern the danger behind the otherwise asymptomatic daughter’s subdued attitude; or a surreptitiously high fever, of little concern because Elisa was playing and laughing.I was made to feel an active part of every initiative and decision. My observation point on Elisa, who could not speak for herself, was fundamental for them.I never experienced the hospital as a hostile environment—quite the contrary!It comforted me to have people around us, ready to intervene, reason, and solve the physiological difficulties of my little girl. The hospital was a room in my house, a room whose door was always ajar and in need, I crossed its threshold full of trust, hope, and courage.Today some of those doctors and nurses are my friends. I have a lot of respect for them, gratitude, and admiration.Elisa being placed on the transplant list and waiting for a donor were the first obstacles to overcome.The “warrior” fought against two monsters, time and the tumor. The timing was everything because Elisa had to be in the period of non-toxicity after chemotherapy but could not wait too many weeks without active therapy in favor of a cancer that, lurking like a vulture, was only waiting for the ideal moment to start growing again.The most dramatic thing to overcome and accept was hoping for someone’s death. For Elisa to live, someone else had to die. I felt like an executioner. I didn’t think of anything else; I didn’t sleep at night.In the end, choosing to visualize death as a gift, I had to accept it.It was summer, on August 20th, and another hot and boring night in hospital awaited us. The nurse came into the room to tell me that our lottery ticket had won that night. There was a compatible liver for Elisa. The organ would come from a young woman who had died while swimming in the Sicilian Sea.If they had stabbed me at that moment, maybe not a drop of blood would have left my body. I was paralyzed, incredulous, terrified.My daughter had already been operated on, but it would be different this time. This time they would open her abdomen to remove her diseased liver and replace it with that of a dead young woman, by now sealed in a body bag in a Sicilian morgue. A cold body, deaf now, silent!A young woman for whom, while I was rejoicing, some other shadow patient was despairing, caught up in an unstoppable whirlwind of pain.I felt like throwing up while I cried tears of joyful hope. Guilt grew in my...