Escargot Build 31 – Building Another Boat

I rationalize building a boat.

The decision is almost already made. I want to build another boat. I am pretty sure I already know which boat I want to make.

But I want to think this through. Not so much like a pro and con list, I think I already know enough reasons not to build a boat, and I can certainly think of enough reasons not to build the boat I am dreaming of. . I think I want to find enough reasons to say yes.

Two quotes seem to fit..

“Heros take journeys, confront dragons, and discover the treasure of their true selves. Although they may feel very alone during the quest, at its end their reward is a sense of community: with themselves, with other people, and with the Earth. Every time we confront death-in-life we confront a dragon, and every time we choose life over non-life … we vanquish the dragon; we bring new life to ourselves and our culture.” Carol Pearson.

“Each man has inside him a basic decency and goodness. If he listens to it and acts on it, he is giving a great deal of what it is the world needs most. It is not complicated, but it takes courage to listen to his own inner goodness and act on it. Do we dare to be ourselves? That is the question that counts” Pablo Casals.

Both quotes promise a better world through our own actions. Simple actions in some ways. Very difficult in others. Their rarity shows that.

Pearson promises an appreciation for and connection with our world through personal challenge. It is as though through awakening all our senses through personal challenge we awaken our sense to the beauty around us, in ourselves, in others, and in nature.

Casals, the great cellist and conductor, sees it more simply perhaps. We don’t need a challenge to awaken, we need simply to awaken. It is already within us.

There is no doubt both are true. Perhaps one could argue both paths lead to the same destination, but one is a shortcut. Is the shortcut the path with the least or most obstacles?

Eleanor Roosevelt saw awakening in life’s stumbles. “You gain strength, and courage and confidence by every experience in which you really stop to look fear in the face”.

We get that when we build a boat, and it has certainly been true in my life.

My son had 11 operations by the time he was 8 years old. He lost so much blood in one operation they had to stop, the operation incomplete.

They were removing bone from the outside of his skull, literally cutting a series of notches into the skull and then knocking them off. Eventually they had removed 9 pounds of bone from his head.

They make an incision across the top of his head from ear to ear, they pull his face away. They started at his upper lip and re-sculpted his face and worked their way back to just beyond his hairline. They then re-attach his face and sew his incision back up. The incisions just above the ears were made in a zig-zag pattern in an effort to allow them to be hidden by the re-growth of hair… eventually., but for now he was Frankenstein’s monster.. my son.

The operation I remember most was done to complete the effect. They cut the grooves, the ground their way back, but the bone was so porous, so vascular, they couldn’t stop the bleeding. About a dozen units of blood later the anesthesiologist called the operation. They were forced to stop the bleeding by laying down a layer of wax over the bone and then sealing him back up.

For the better part of a year bits of wax would work they way to the surface. His head would soften like a bruised apple, eventually bursting with fluids. We would dab at it for days, changing bandages, and finally picking out bits of wax. The wound would heal, but no hair would grow there for the rest of his life. At school he was known as the kid with the bandage on his head.

We spent days in Intensive care. Intensive care is parent hell. Children die there. Whenever something is going wrong in the intensive care unit all parents are thrown out. Parents hover around the door to intensive care waiting for the word that they can be with their children again.

One day Karen and I used the opportunity to grab a bite to eat in the hospital cafeteria. When we came back a young couple was in agony waiting by the door for word on their baby. Their child was dying.

“Oh no, Oh no, Oh no.. what are are we going to do. Oh my god”.. the foundation of their world destroyed forever. She collapsed to the floor, her husband so enveloped in his own pain and fear he could not help her.

For many parents their children have been in intensive care for months, and they literally live in a hallway nearby, mats and fold down chairs and blankets their beds and each moment is like walking on thin ice.

Their sleep punctuated by a parent awakened with bad news. The cries of anguish, cries from somewhere deep within, as though all horrors and possible loss have suddenly exploded forth in one horrible moment.

But it isn’t just a moment.

Challenges.

My son came back. Theirs did not. Your joy and their pain can not mix. Both hang in the air.. both become a part of our lives. Their pain will never ease.. not in a meaningful way. We go on. We take our children to the beach. We struggle with them over homework. Our lives go on… but we are changed. We did gain something through the challenge, through facing our fear, not that we had a choice. We were not heros searching for meaning or joy or a better world. We were frightened parents. Terrified parents. We were alone.

Relatives and friends brought us casseroles. Most reached out to help us heal. A few were too afraid. My own mother, in some ways developmentally frozen at the age of ten when her sister died, couldn’t even acknowledge the operation, let alone visit us at the hospital. (I learned the day my father died that my mother thought she had given her sister the illness that killed her. It was the first time she had talked about her sister. This told me why.)

My son lived.. but.. My son would be gone in some ways. A new face awaited me.. him.. us.

When I first saw my son it literally took my breath away. His head was the size of a basketball. His eyes were swollen shut. His hair stood straight up, his hair gel some sort of antibiotic cream. His head was shaved in a one inch strip from ear to ear with the loose ends from the tied knotting of his stitches acting as accents along the dark thread weaving across the incision, especially pronounced along the zig zag cuts just above each ear.

Below each ear tubes ran up under his scalp clearly visible running up behind his ear and over the top of his head.. under his skin. At the other end of each of the tubes was a bulb somewhat like the squeeze bulb from a turkey baster, except that these were clear so as to reveal how much drainage from they had sucked off of his head. They looked a bit like some new fangled ear rings from hell.

Throughout all of his operations I tried to be the strong one. I tried to be the optimistic, no realistic voice that I thought my wife needed. My task was to be the rock of confidence that everything was alright, that, no, I actually thought he was looking better today. But seeing Alex for the first time after this operation, I stumbled for the phone. I needed her. I was almost in shock. I had expected something different when I came in to see my son’s new face.

For several hours my wife and I held hands as we sat at Alex’s side. He was still unconscious. A nurse sat on a stool at end of his bed pouring over his charts. Every few minutes she would adjust the flow of his medicines, or drain the contests of the turkey baster bulbs and measure the output.

That night Karen’s mother came to ICU to relieve us so we could spend a couple of hours with our daughter over dinner. A half hour into dinner the phone rang. Grandma said Alex was calling for us and she didn’t seem to be able to say anything to reassure him. I could hear him calling for us in the background.

I rushed to the hospital and ran to his room. If anything his head was larger. My son normally wears hearing aids, but there was no way they would even fit over his ear now, and they would never survive the drainage or the mounds of slimy antibiotics. I moved close to his ear to let him know I was there, lightly stroking his hand trying to avoid the IVs. With his hearing aids out and his eyes swollen shut I knew his fear was compounded by his inability to perceive his surroundings. He was fighting to understand what was happening but virtually all of his senses were numbed or totally absent.

“Alex, it’s Daddy. I love you. I’m here.”

He stopped crying instantly.

“You are OK, Buddy. Your eyes ae swollen shut, but the swelling will go down soon and you will be able to see”

“You are in a large room with lots of nurses. They are here taking care of you. Mommy will be here soon. Next to your bed is an orange wall with pictures of butterflies.”

Leaning into his ear and speaking in a loud voice I tried to sound calm and loving. He loves machinery of any kind, so really ICU would look pretty cool to him. I described the heart monitor, the oxygenation sensor and monitor, the little stick-on discs and wires that were stuck to his chest monitoring his heart and his breathing.

He was asleep again. A few tears had managed to squeeze through the swelling and were beginning to dry on his cheek.

I cried. too.

This experience has changed us all. We have seen our dragons. We have faced our fear, and through it we saw each other. Our fear was of losing Alex., of crumpling to the floor swallowed alive by anguish.

We hold each other tighter now. We appreciate each other, though that doesn’t say it strongly enough.

I hope our family is done with operatons. The whole experience was small scale parent hell, but there has been a silver lining.

Perhaps Pearson was right. Although we felt utterly alone at times, our reward has been a stronger sense of community: with ourselves, with each other, and with the World.

It has been a couple of years since those operations and Alex is doing well. We live each day at a time. Each doctor visit is a surprise, lately good surprises. His bone grows. His hearing has slipped a touch, but the optic nerves are safe after his last operation to remove bone that was growing into them.

I worried that Alex would be teased. That has been rare. In fact, he has gone on a couple of “dates” with a wonderful girl.

“Just friends Dad”.

Since he is 13 I am glad! But I am even happier that others accept him, including the opposite sex. My second greatest fear now gone.

He makes freinds easily and made a new one at the local drug store last week while they both looked at video games. His sports team won every game including the city championship. He isn’t the best on the team, but he loves it and is proud.

For Alex… life is good.

And… finally.. for me too.

I am ready for a new challenge.

I want to build another boat.

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