Roads We've Traveled

The Day Everything Changed

Author’s Note: I always intended for this website to be a vehicle for me telling my own story, but I was concerned about how I would do it. I am not the first person to suffer tragedy, nor will I be the last. I didn’t want it all to be about me and I didn’t want to seem as if was somehow, “cashing in” on my son’s death. But, as more time has passed, the urge to write about that awful summer has just gotten greater.

So, I feel it is time. Every few weeks or so, I will be posting parts of my own story. In 2012, my family went through a series of tragedies that deeply scarred us and forced to look at the world in a different way. We survived, but we will always remember the day everything changed. 

Sunday, July 1, 2012

If not for the ventilator, Aidan, my younger child, looked peacefully asleep.

He had been helicoptered from Emerson Hospital in Concord to Mass General’s PICU unit after he had gotten outside and fell into a koi pond next to our new house. My wife had found him, called for help, the EMT’s had arrived and somehow managed to get his heart started again. But after so much time without oxygen, well…

On the ride to Mass General my eldest brother and sister-in-law said the Rosary while I sat in the backseat, stunned and trying to work through all that had just happened within the last few weeks. Just two weeks earlier, on Father’s Day, I had been diagnosed with Acute Lymphoblastic Leukemia and was admitted to Lahey Clinic Medical Center in Burlington, MA to begin induction chemotherapy.

In the same hospital, at the same time, and on the same floor, was my mother, Nancy Mallio. She was there to get a kidney removed because it had a large tumor on it. And I had just received even more bad news in the preceding days. Apparently, my genotype made me, should I be fortunate enough to go into remission in the first place, more likely to relapse.

“Is he in any pain?”

I was weak and sick from chemotherapy. I was terrified about what would happen next in my treatment. All these questions hovered: will I survive treatment? If I should survive, what would that look like? Will I have this horrible, lingering, cancerous death where relatives had to watch me grow weaker by the hour? Would I ever see home again?

And now, those questions meant nothing. At that moment nothing I had ever worried about seemed to matter. Aidan, my not even a year old, sweet little boy, was lying in a hospital bed far too big for his body, and breathing through a machine.

“Is he in any pain?” I asked.

A doctor, whose name I barely heard and do not remember, assured me he was not. I remember he was young – too young it would seem – to be the head doctor. And, as it turns out, he wasn’t. I do not remember the head doctor’s name either. I remember her grave face and calm voice. She, along with the other doctors and nurses in the room, were kind, caring, and honest. They did not shower us with false hope. They knew that would be of no help. They told me that the chances of Aidan surviving were minimal. But Sara and I had known this already known this without being told. His brain had been without oxygen for too long.

How many times, I wondered, has this doctor had calmly delivered news like this? A few dozen? A hundred? More?

Why Wasn’t I Screaming?

I reached down to touch my boy’s face and stumbled a little. I was most certainly in shock. My brain and emotions felt kicked loose from the rest of me and I was functioning on only the most basic of levels. I was self-aware enough to realize that my brain must have been on the defensive and it was probably the reason I wasn’t screaming out loud to the point where I had to be sedated.

Instead, my head was filled with a buzzing feeling, almost like white noise. It was like I could feel the walls go up in my conscience like the Berlin Wall being slapped together in 1961. My brain had taken the waves of despair and sadness that would inevitably follow later and channeled them down, down, down into my consciousness so that I could function.

And in front of me, there was my Aidan: his heart beating but not beating. Alive but only through the help of machines. Trapped between this world and whatever it was that lay beyond. I’m not much of a believer in the direct intervening of God in our lives, but maybe, just maybe, his heart was started so I could see him one last time and say goodbye.

I asked for a moment alone with him and the room cleared of doctors and nurses and even my wife. I stood, staring at my boy. It’s funny, what you remember in these situations and what you do don’t. A funny detail I remember was that Mass General had changed him into pajamas with little planets and spaceships on them which, I felt, was rather nice. Nice for the parent and the child. Instead of a hospital “johnny” you get cute pajamas. I don’t remember the doctor’s name, but I do remember those PJ’s. Odd isn’t it?

Aidan’s blond hair was a little tousled and his eyes were closed. And they would never open again. Could he even hear me?

“Daddy’s Here…”

“Daddy’s here,” I whispered and a lump of hot pain rose in my throat and broke and tears spilled down my cheeks.

“Daddy’s here,” I repeated. It was all I could say. Because daddy had not been there. Daddy had been in a hospital room being pumped full of poison. Sara had been alone with two boys, both suffering from the croup and had been up all night and was not functioning well. And then the accident had happened. Daddy had not been there to protect him. Daddy had not been there to help his wife. Daddy had failed.

“Daddy’s here…” I intoned a last time, and began to pray. I did not pray for Aidan to be “saved” because I knew that it wasn’t going to happen. And I wasn’t about to give myself some false hope. I prayed for Aidan’s forgiveness and for God to embrace my son and let him know eternal joy and peace. Please God…Just help me get through this, for me, for my wife, for Michael…Just please…Let me be there for them. They’re going to need me….

The Most Horrible of Choices

Soon, Sara and I would have to push aside everything and have that terrible discussion about when we would actually take Aidan off life support and see if he could make it on his own. There was no shortage of advice from people. And, if I had to be honest, I hardly remember the conversation. Sara and I knew it would mean a miracle for Aidan to live. And, after being without oxygen for so long, would he have any kind of life? Still he was our son; our quiet joy, our beautiful Aidan.

We managed to set aside our emotions and base our decision on what the doctors had told us – that recovery simply was not probable. We had pushed back, we had asked if there was any hope, we had inquired about possible tests that could determine the extent of brain damage. But, as I said, they weren’t much for pipe dreams or pie-in-the-sky fantasy – and thank God for that. No, the doctors didn’t go far as to say “impossible” but, as I said, but they made it clear that the chances of Aidan surviving were next to nil. Gently blunt was the way I’d put it. They made sure Sara and I had no illusions about Aidan’s chances.

Two days, we decided. It was Sunday. We would take him off life support on Tuesday and hope for a miracle.

Questions swirled in my head: Did taking him off life support condemn him to death? Was it, essentially, “giving up” on our son? Were we giving up on our faith in God? How do you make a decision such as this and live with it? Was it possible that some miracle would happen? Going on five years later, these questions still plague me.

And they probably always will.

“What just happened?”

The sun was setting when my best friend Carl drove me back to Lahey Hospital to be readmitted through the facility’s emergency room. I do not remember much after that, but Carl said I turned to him at some point during the ride and asked “What just happened?”

For the next two days, we waited. The story had made the local news and Lahey was concerned about reporters trying to call for comment, so they removed my name from their public registry. For two days, I sat in bed. Not leaving it except to go to the bathroom. And although the shock continued to dull my senses, I could sense the pain and agony and rage just beneath the surface of my consciousness and it sounded like white noise and screams.

In the End

I couldn’t be there when Aidan died. I had to restart chemotherapy at Lahey Hospital. And to this day, I haven’t forgiven myself for being sick. But Sara was there. She went to Mass General with her mother and a trusted friend.

When she arrived, the PICU took him off life support and gave him to Sara to hold. And she did. She held him. She cradled him. She made sure he didn’t die alone.

He lived for 15 minutes.

Sara called me, crying. She told me he was gone and I told her I loved her.

There was nothing more to be said.

Help and Resources

If you, or someone you love, is struggling with grief, here are a few organizations that can help:

Compassionate Friends is a non-profit group focusing on family support after a child dies. They offer support groups and resources for grieving families.

The Children’s Room in Arlington, MA works with grieving families but also offers support for grieving siblings.