2003 by Greg Galanos
John is my son. He is the best little boy in the world and I love him more than anything. He died seven months ago.
Should I say he “was” my son? Can I say he “is”, instead of “was”? I don’t know. He still is mine, even if he is gone. I hate the past tense. He was. He is.
Emotions now come and go like the hormone rushes of a nervous adolescent. They visit as they please, without warning or reason. I have found myself crying without being sad, utterly hopeless while functioning normally. Sadness, anger, loss all come when they want and stay till they are done. When I learned this soon after his death, life became easier for me. I accepted feeling well, without guilt, because I knew I would be sad when it was time.
My wife and I found ourselves wrapped in urgent embraces. Soaking in the feeling of our flesh and bathing in the immediate moment. Never have I felt the life affirming nature of sex until those brief respites. Feeling happy and full of life for brief moments was a surprise. The shock of feeling pleasure was compounded because I had wondered about the possibility of his death, and expected unrelenting despair, since the day after he was born.
That day they discovered a complex set of heart defects that required surgery. John was diagnosed with five separate heart defects. Simply put the left side of his heart was underdeveloped and incapable of doing its job.
To say the heart is complex would be obvious. But the basics are simple. The heart has four chambers. The two chambers on the left, the left Atrium and left Ventricle, pump oxygen rich blood throughout the body. There are two chambers on the right, the right Atrium and right Ventricle. Their task is to send oxygen poor blood to the lungs so it can receive a new load and then return to the heart to be sent out again by the Ventricles. Valves of muscle powered by electric signals move blood from chamber to chamber.
In that complexity there are a plethora of things that can go wrong. Valves can face the wrong direction, arteries can be connected to the wrong section and any chamber can be grossly misshapen.
There was a revolutionary series of three operations that could give him a functioning heart. The first stage was called the Norwood procedure. That the operation had a name was comforting to two quivering, stunned parents. A name connoted solidity and practice. It suggested a history and triumphant announcements by a brave and noble Dr. Norwood, whoever he was. Scientific progress comes with names and labels.
He had a successful Norwood procedure at five days old, and was back a year later for another procedure. I don’t remember what that one was called. It didn’t go well. His heart didn’t like the changes from the surgery, so the doctor had to operate two more times in the next 18 hours just to save him. Somewhere in that time, he had two strokes. The doctors and nurses didn’t think he would survive the night. Politely, compassionately, they never told us their fears. We already knew that he wouldn’t make it. So we held each other, hoped and lived each second hoping that the next tick of clock wouldn’t come.
John needed treatment on the cutting edge of medicine and he was getting it. But the metaphor of the cutting edge is misleading. An edge implies a clear demarcation between good and bad, hope and loss. Medical breakthroughs take years to be effectively put into practice. It is more apt to look at the brilliant breakthrough as the dawn. Years will pass as the light spreads removing shadows and illuminating doctors and patients around the world.
However on that night after failed surgeries and death all to close, thought was not possible. But my boy is incredible. He survived the night and the next. He lingered in a coma for eight weeks and then woke. John, only 15 months at the time, was relentless. He couldn’t walk or even drink out of a bottle any more. But he recovered. The doctors appropriately set our expectations low and John stunned them. They said he might not walk, but he did and eventually never stopped running. He might not talk, but he did and eventually never shut up. He might not be normal, and he wasn’t. He was powerfully friendly and happy.
He lived seven more years after that. Years filled with more surgeries, scares, and playing ball, reading books and looking for shapes in the clouds.
After he died, his surgeon called us and said that they learned much from John’s recovery. He helped them be better and give hope to other parents. It helps to know that. It also helps that we were able to donate his corneas. It is good to know that part of him carries on into the future.
I need good things to help with the sadness and loss. The loss of talking and being with him is the hardest. The loss of being a daddy and doing daddy things is a struggle. Sadness, the simple crushing weight of sorrow, is easy for me. When I am sad, it is pure and simple. I just am. I am miserable, often sobbing or screaming, but it passes quickly. I am in the moment, bad as it may be, then onto the next.
Loss is harder because it is about an emptiness that can’t be filled. Deprivation of John forever; missed opportunities and plans never completed. While sadness is about the present, loss is always accusing you from the past and teasing you from the future. And I did feel accused. My first week back at work, I couldn’t shake the feeling that I had failed as a father and that everybody knew it. I thought I could hear it in the voices and looks of my coworkers. But that was all me. I was the one telling myself I was a loser.
I felt like the shy, insecure child that I was until college. The little boy that couldn’t fit in, say the right things or stop from being anxious. I don’t like that me because I am grown now and different. I am the person I want to be, without all those stupid fears and anxieties. But losing John brought that “little me” back. So I wandered around work trying to deal with the non-existent incriminating looks of my co-workers. I was a failure. Because daddies are supposed to protect their babies, not let them die.
After a week, I collapsed into my wife’s arms and begged for reassurance that I wasn’t a loser. At least I could ask. The little boy I used to be would never have been able to ask. The asking made me feel better and her reassurance built me up and then I thought about John. By this time, the grief had dimmed slightly, so I could remember him without being sad.
I remembered him in a diner in North Dakota, during our drive, moving to Alaska from New Jersey. He went to the bathroom and on the way back grabbed a broom because the cook was sweeping.
“John, put that down. You don’t want to get in the way honey.”
“I’m helping my friend,” He said while pushing the broom into the wall and flashing a wide smile.
“It’s alright. He can help.” said the cook, smiling, at John. The cook spent the next half-hour following John around sweeping up after his enthusiastic broom pushing. The couple in the booth next to us said we should stay and settle there instead of Alaska, while John was busy getting them a napkin.
I thought of a trip to Seward on the Alaska coast when he was six. John and I were walking on a pier. I was holding his hand talking about the boats. We passed a big girl, about 10 and her mother.
“Hi friend.” John said nonchalantly to the girl.
“Hi John.” replied the girl.
“Hi John.” said the mom. “Is this your Daddy?”
And he introduced me. I don’t know anybody in Seward but John did. He met them at his school, even the big kids knew him and played with him.
John was everything that I wasn’t as child. He was relentlessly happy and playful. He was supremely confident, never doubting that everybody loved him and wanted to play with him. That was part of what made him so lovable and a true source of my pride. He was one of those kids that instinctively knew the world revolved around him.
“Poppa. Where is my moon?”
“Daddy, what does my sun do when it sleeps?”
“Daddy what are my friends doing?
“What friends honey?”
“Those boys,” he said pointing to a bunch of teenagers skateboarding.
“You don’t know those boys John.”
“But they’re my friends.” He said looking puzzled that I didn’t know something so obvious.
And thinking about him and the boy that he was somehow befriended that shy boy that I was. I didn’t realize when he was alive that he had given me that gift of soothing the hopeless little boy that I used to be.
At times I thought of my father. My father never met John; he was fifty when I was born and died a few years before John came to us. He would have adored John beyond belief. Partly because he was my son, but also because John would have given him all the affection that my father and I never shared. Many men of my father’s generation couldn’t show their feelings. They expressed love by working hard. I knew my father loved me; I never doubted that. But the only time I told him I loved him, was a few weeks before he died of cancer. For both of us it was sweet and good; awkward and uncomfortable. But at least it was said. With John, that was never a problem. I told him I loved him everyday, and he returned the favor. We were as affectionate to each other as possible. Hugs and kisses all the time. So when John was alive, he helped me heal from the lack of affection between my father and me. I think that lack of affection inspired me to be a more loving parent to John. I hope so because having neither my son nor father is hard. If I knew that there was an afterlife and John was with my father, I could go on happily.
I regret many things in my life. Not having a closer relationship with my dad and missing things from being shy are the two most prominent. I hate regret; it is a harsh unrelenting emotion. It is all in the past, nothing to be done except wish for the impossible, that things were different. And from the day John died until now, I can say I have no regrets about my time with John. I am a great daddy. It may be my one true talent in this world. I played with him everyday, and we shared dozens of private games and jokes. I could make him laugh just by looking at him. He fell asleep in my arms more times then I could count. I am glad to be free of regret. I don’t know if I could go on with it on my mind.
Now, months later, I can look back and appreciate another saving grace. We were there for his last moments. He had been perfectly healthy until he got a nasty infection that landed him in the hospital. His heart struggled under the stress, and he almost died five days after he got the bug, yet he fought till he was on the road to recovery. He was going to be better. But at some point, the doctors and we will never know when, his heart had given all it had. He took two days of struggle to finally leave. But he drained every beat out of his malformed heart that he could, then moved on.
To where I don’t know. What I do know, from people who have had near-death experiences, is that while dying, the mind or soul or whatever floats around the body. They almost all feel good, not scared. The people who have had bad experiences had strong fears of devils and harsh retribution in the afterlife. So John would be fine. He wouldn’t be scared at all because he was friendly and happy. He called everybody his friend, and he knew everybody in his school. He knew the principal, who couldn’t reprimand him even when he was bad. He played with fifth graders, even though he was only in first grade, because he was so fun and lovable. He knew the janitors and all the teachers, and he was that way in all his schools. He woke up smiling and slept peacefully.
But I have lost my point. He would have seen his mother and grandmother at his feet and me next to him, telling him that I loved him. That is more then most people will get in their last moment. It is more then you will likely get. So don’t you dare pity him.
What might he have felt? Near death experiences, which are scant evidence, suggests that the process of dying is not a terrible thing. People often see loved ones and feel at peace. The classic white light and long hallway does happen frequently. The near dying seem to know what is happening and are able to be coherent. Although how a child’s mind would make sense of dying seems as big a mystery as death itself.
What else can we learn from near death experiences? Nothing at this point in our lives. You and I will eventually find out what he went through. That has been a comforting thought.
I don’t know if there is a God or heaven or if his soul exists. Sometimes I hope it does so I can be with him again, sometime or someplace. But if there is nothing after this world, then there will be a time when I don’t miss him, and he will have no bitterness over what he has missed. Those would be good things.
When you have a child that survives the ordeals that John did when he was young, people will call him a miracle child. Of course to any parent their child is always a miracle. But after a narrow escape from death at only a year old it is easy to believe, even if I don’t really know what is a miracle. Smiling friends will say that everything happens for a reason. And we are stronger for having survived John’s struggles, that we appreciate life and our child more because of our struggles. All reasonable statements.
When that miracle is revoked, then what are we to think? Does everything happen for a reason? I don’t want to believe there is a reason for his loss. And miracles shouldn’t end. That should be a basic quality of a miracle. It is such an easy word to throw around like love, hate or hope. I don’t ponder the nature of miracles much, not because of my lack of religious feelings, but because the path that thought follows is so tortuous. If he truly was miracle then did he lose his status somehow? Was he not really a miracle? I end my brief thoughts of miracles with the fairly confident feeling that miracle is word people use without definition or understanding.
Irregardless, the miracle child is gone. What is left is an odd collection of worn, sometimes broken but loved toys, leisurely, colored pictures, and small, comfy, stained jammies
Also a shiny smooth rock remains. A rock he liked, carried around, played with for a few days when he was seven. It fit his small hand perfectly so that he could carry it everywhere as little one’s do with favorite things. For whatever reason that objects trigger vivid brief remembrances, that rock brings back a quiet, shared chuckle while raking crunchy fall leaves and a hand gently stroking fine, blond hair late at night. Moments that because they have occurred will always exist in the collection of infinite events in the universe. Memories that I still carry with me and will take out for few days, to daydream about for hours, then like a child tiring of a favorite toy, move on to other treasured moments. I guess that is what we all do with our storied past’s whether they are lost children, ended love affairs or the times of our life. We lose ourselves in our past and, hopefully, can revel in the goodness of our story. It helps me survive now that I have so many incandescent, private, little memories. I think that people misidentify what is a miracle.
Inadvertently I have learned about the power of ritual. And that ritual we shared was to give meaning when I didn’t know it was possible. He loved to help me do things. So when we got a humidifier that had to be refilled every night, he always wanted to help. John got the empty jugs and carried them to the sink and would screw the tops back on when we were done. We used this as a signal for the coming of bedtime. I also liked to make up nicknames for him, sometimes I went days without ever calling him John. Johnasaurus and Johnster were popular with me. I would call him Mary or Becky and he would respond without a blink. He liked to be called mommy or Betty, his Grandmothers name. I only got a reaction, a smile and an exasperated look, when I called him his teacher’s names.
“Come hear Ms. Oulette,” I said.
‘Oh Daddy, stop it.” He said with a smile, his arms akimbo.
Since his favorite part was putting on the top to the humidifier jugs, I called him “top boy” and I was “jug boy” because I carried the full jugs. After we filled the jugs, we put on his pajamas and shared a snack. One night I didn’t want the cake he wanted.
“I want a ding dong honey not the strawberry cake.
“No, let’s eat pink cake.” He said.
“Why don’t you eat the pink cake, and I’ll eat the ding-dong” I replied, satisfied that I was teaching him a lesson about compromise.
“Oh well. Let’s eat the ding dong.” And he ran over and grabbed one. I was startled. I hadn’t understood that sharing the same snack was part of the ritual. So we sat, and I took a bite and then gave him one till it was gone.
Next was reading and games.
“Daddy. You pick. Bingo, Jenga.” he said holding up two fingers.
I was tired so I said,” No, you pick honey”
“You pick daddy. Bingo, Jenga.”
“It’s your turn tonight, Angelica.” I said trying to get a laugh.
“You pick daddy. Bingo, Jenga.” he said patiently still holding two fingers up. I figured it out. In our ritual Dad, picks the games.
He died at 6:10 P.M. on a gray Anchorage afternoon. A few snowflakes fell minutes after his death. For him? Who knows, but he did love the snow. I paced around his bed and all the doctors and nurses came in and hugged us. It came to 8:00 PM, his bedtime, and I knew what to do. I scrounged for a cookie in one of our bags. I ran the water that would have gone in the humidifier. Failing to hold back my tears, I took a bite of the cookie and choked on it. I put the rest on the bed for him. That little ritual made all the other moments that have followed easier to bear.
In this new world each emotion has its own physical effects. Sadness brings depression and a lack of the energy to care. Loss leads to brief uncontrolled bouts of crying which is exhausting. Anger is hard and bitter. But with it comes Adrenaline that brings life after tear-induced drowsiness. Anger made me punch walls and scream but it also brings the swagger of a defiant survivor. Angry people never just lie down and die. Yet it is hard for me to be angry because I am not an angry person. Like my father and son, we get furious for a few minutes and then it passes. We just aren’t good at staying angry. As I write this, I haven’t felt anger in months. But sometimes as with all these emotions, it comes to visit.
Anger at a world where pain is inflicted on the innocent and the good. Anger at people who are happy without having earned it. People who are selfish and greedy yet have their babies. My anger gives me strength and hope at times. I remember and treasure the fact that this cruel, stupid world will be swept clean by glaciers or plagues. Every swing that John will not push and book he will not read will be annihilated. John’s own yellow sun will eventually die. In its death throes it will grow large and red and this world will burn. It will be swallowed up to be forgotten by all. And as I calm from my righteous rage, only few thoughts remain. John was the best little boy in the world. I loved him more then anything else and he lived.
Born in New Jersey I migrated to Alaska seven years ago.
I work with mentally ill children and write as a way of relaxing and growing.
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