My name is Grazia Maria. I am 77 years old, and I am thinking of Alberto, my special son, my beautiful angel who would have turned 50 last April.
Would have, because this past winter he went to Heaven.
Brain-damaged from birth and suffering from multiple serious illnesses that caused him tremendous pain, without the ability to move on his own, from his wheelchair he spoke with his eyes and gave love—something he did his whole life, happy to be alive.
He was God's gift to us, and we tried to care for him and tend to his needs in every way we could, always thinking of what was best for him and what would bring him peace.
Years ago, wanting to ensure his safety after we were gone, we carefully examined the options available to us. Then we gradually moved him into the group home Il Carro, where he lived, coming home to us for four days every other week. It was a painful decision at first, but it proved to be the right one.
He was cared for with the greatest professionalism and love, the way a true family cares for its own. I think of him constantly because I miss his smiles so much, his deep eyes, the way his face would rest against mine when I could lift him onto the table and hold him close, his pouting expression if I hadn't put on makeup, and all the many ways he had of expressing himself. Everything about him made me happy. I think now he is with his "friend Jesus": he walks, he speaks, and he does not suffer anymore—especially after 2020, when he suffered so much and for so long.
How do you describe the grief of parents who lose a child? You cannot, really. But when I was asked if I would be willing to tell what happened to us last year, I decided I would. I won't dwell on what everyone, sadly, knows all too well from living through it: the total lockdowns, the fear of coronavirus, the absence of embraces, the empty cities, and the lines of trucks carrying away the many dead, even denied a final goodbye from their loved ones. Instead, I will share the events and feelings that my husband and I will not easily forget—feelings that began in the first days of March 2020.
Before the pandemic measures were officially announced, we were preparing to celebrate our 50th wedding anniversary on March 21st. But on March 4th, we had to decide whether Alberto should remain in his group home or come stay with us to avoid the risks of travel, which was being discouraged anyway.
My heart wanted him with us. But when I thought about the fact that we would have no outside help and might face serious difficulties caring for him, my husband and I decided together to leave him in the group home, especially since we didn't know how long this new situation would last—a situation that meant we could not visit him.
Not seeing him, not being able to hold him, kiss him—for someone like me, who has always been warm and affectionate, it was torture. And it was not easy for Alberto either. We would call to talk to him, but this sudden, inexplicable change in routine deeply upset him, especially someone who has never liked the unexpected. There was nothing we could do.
In recent years, we had stopped feeding him by mouth and begun using a PEG tube—a small plastic tube inserted into his stomach from the outside to deliver semi-liquid food administered by an electronic pump. We had never had problems with it, always checking to make sure everything was working properly. At the end of April, food backed up from the PEG tube, and unfortunately, it caused one of the serious complications this device can lead to: aspiration pneumonia. It quickly became very grave, so one evening Alberto was transported by ambulance to a hospital far from home.
The next morning we went right away. For the first time I saw the streets deserted. When we arrived, there were outdoor tents set up to receive coronavirus patients, staffed by nurses covered from head to foot in protective gear. It was a terrible sight. As we expected, we were not allowed to enter, and we had to turn back.
That evening, by phone, they told us what procedures they had done, including draining fluid from his lungs that had made it impossible to read the X-rays. They also told us they had done a molecular test that came back negative for coronavirus.
When his condition did not improve, he was transferred to another hospital, closer to home, where he stayed in intensive care until mid-May.
How can I forget the dread of those late-night phone calls when his condition worsened.
The news they gave us made us fear for his life. A long period began when so many people prayed with us to God. We were able to see Alberto for 30 minutes just a few times: he was asleep, and as is normal in those units, he had needles and various tubes. Finally I was near him again, and happy about it even as my heart was gripped by anguish.
Thank God he improved. They transferred him to a Respiratory Rehabilitation Center so he could recover the lung function that was now being done by only one lung.
The stay at that facility looked like it would be long, but we were able to see him—one at a time, for a total of ninety minutes, twice a week—with us also covered head to foot like the nurses. Fortunately, my sister Fiorella helped us by visiting her beloved nephew in our place sometimes.
We could touch him only with gloves and only on his hands or feet, so there were no hugs and no contact with his face. But seeing him filled us with joy.
I want to say that all the staff in that unit—doctors and nurses—gave Alberto meticulous professional and human attention and so much love. We could call every day for updates and sometimes to speak with him on the phone.
At first, Alberto expressed his displeasure at all the events and restrictions in every way he could. He wanted to return to his normal life. He would stare at me with a questioning look, asking why I was not kissing and hugging him as I always did. I tried to explain, but he pretended not to understand the things he did not like. Then he began to form a genuine connection with all the staff.
By late July he would have been ready to leave the Center, but unfortunately a new risk of food backing up—caught in time, thank God—raised the same concerns about the dangers he faced. The doctors looked deeper into the problem and told us there was a possibility of replacing the PEG with a more advanced one that would prevent the backups. It could have been the perfect solution for Alberto's wellbeing, so we agreed, thinking it would happen soon. It did not. Days went by. Alberto was clearly tired of the situation. And then, when September came, as we all know, the second wave of the pandemic began. Mid-month, they told us we could no longer visit him.
The doctors tried to get the procedure done at the same Center, but without success. So his stay continued.
He was admitted on October 22nd. We rushed to the hospital to meet the ambulance when it arrived, but we were not allowed into the emergency room. Only one of us could see him, so my husband went. Alberto was half-asleep and calm, but we do not know if he knew his father was there.
We tried to tell the doctor who received him something about Alberto, but we were only given a phone number for news.
What can I say? In short, we were never told which unit he was in. When we called, no one ever answered, and they never called us—except to say they had decided to do extensive testing and would delay the procedure for 10 days.
On October 31st, they told me by phone that they had also done a test that came back positive. On November 2nd, around 11 a.m., they called to tell us the situation was extremely grave and we should come to the hospital. Shortly after, while we were on the road, another call came: Alberto had died. Of course, we were not allowed to see him—not in his room, and certainly not in the morgue. Thank God we were able to have a funeral. At least in church we were close to him.
From his medical file, we later learned that he had been moved from one lab to another, from one unit to another, and had even been in contact with someone with COVID.
When he was admitted to that last hospital, Alberto's molecular test was negative. All his tests in the months before had been negative too.
Eight months without him at home. Eight months without seeing him, without holding him and kissing him. Confined to bed, with periods of terrible suffering. Admitted at last for a life-saving procedure, he spent his final days there without being able to complain, without understanding why it was all happening, without knowing why his mother and father were not by his side during the gravest days of his life.
Now our angel knows everything. He is happy and near us, and I hope he will help me remove this boulder from my heart that still weighs on me.
I have not cried as much as I thought I would. But Alberto did not want to see me cry.
