"You have to do whatever you can't not do."
- Cloud Atlas
My first glimpse of my son, having only a few minutes prior being taken from my wife's body via emergency c-section, was not the heart-melting, joyous moment I had been told to expect my whole life.
I entered the room to be greeted with this view:
My son, lying on one side of the room, face up and quite still. A row of doctors and nurses wearing masks and operating gowns. Silver trays and tables, sterile white and blue sheets. My wife lying motionless and unconscious on the other side of the room. I stood at the door to the operating room, surrounded by nurses.
I manage half a smile, as I can feel some tension in the room.
Looking at my son, I say quietly, more to myself than anyone, "hey there cutie." I don't really know what to say or do.
I looked over at the row of masked faces in front of me.
One of the doctors then proceeds to list some features of my son's body, gently touching each part of him as she speaks.
Six toes on one foot.
Another six toes; the other foot.
Six fingers one one hand.
- Cloud Atlas
My first glimpse of my son, having only a few minutes prior being taken from my wife's body via emergency c-section, was not the heart-melting, joyous moment I had been told to expect my whole life.
I entered the room to be greeted with this view:
My son, lying on one side of the room, face up and quite still. A row of doctors and nurses wearing masks and operating gowns. Silver trays and tables, sterile white and blue sheets. My wife lying motionless and unconscious on the other side of the room. I stood at the door to the operating room, surrounded by nurses.
I manage half a smile, as I can feel some tension in the room.
Looking at my son, I say quietly, more to myself than anyone, "hey there cutie." I don't really know what to say or do.
I looked over at the row of masked faces in front of me.
One of the doctors then proceeds to list some features of my son's body, gently touching each part of him as she speaks.
Six toes on one foot.
Another six toes; the other foot.
Six fingers one one hand.
The other hand clenched tightly closed.
One ear. The other is severely deformed.
A hole in his head. Part of his scalp is missing.
I can't really see his hands and feet. But the top of his head is all red. Redder than it should be. It looks bad.
I take in all of this information as though it is a list of arbitrary facts. I comprehend and accept it all. Just looking... and nodding.
The doctor asks, "do you have any questions?"
My mind struggles to process what I've just been told. My only thought is of my wife. My companion in life for the past 7 years. My love.
"Is my wife OK?"
"Yes."
"OK. That's all."
The doctor gestures towards the door behind me.
A nurse leads me out of the room. I turn and follow her, in a daze. Feeling nothing.
My only thought is, "My son is..."
"...broken."
This thought echoes through my mind.
As I pass the other nurses standing around, one touches my arm, "are you ok?"
I glace vaguely towards her and nod.
The nurse leads me back to the waiting room.
Just to pause for a moment:
It's difficult to describe this experience by doing anything other than listing a series of events and actions. I immediately entered 'survival mode' the moment I left that operating room. And for me, that involves very little thought, very little discernible emotion - just one thing at one time; one foot in front of the other; just do what I have to do in each moment.
Thinking back, I stayed in that survival mode for quite some time; months even. I just took all of the facts in as they were presented to me. Input information, process, output decision. This was how I made it through that period in which my son was fighting for his life, and we were fighting right along with him. My wife and I supported each other throughout all of the decisions we had to make. Honestly, for me, those decisions were the easy part - I had a single motivating force that completely eclipsed all others; give my son a happy and comfortable life. That's all. If it helped to achieve that goal, I wanted to do it.
So I'm back in the waiting room...
I immediately reach for my phone to contact my family; my mum and brothers. I told them everything I knew. At first, one or two of them didn't believe me. "oh come on!".. "stop it!". Totally fair enough; it's the kind of inappropriate silly joke I might tell.
I assured them that I was very serious. He is sick.
Oh... ....
The mountains of support and concern that followed will live with me until the day I die. My family never once thought of themselves in all their offers to fly over to Japan to help, comfort, support, just to be close. I declined all their offers, but noticed and appreciated every single one to my core.
When the nurse returns, she tells me that my son will be taken to another larger hospital by ambulance. She asks me if I want to go with him or stay and wait for my wife to awake.
My first thought, to which I felt completely confident, was "No... I want to stay with my wife. I can't go alone to a hospital in Japan without her. How can I do that....?" My mind was so cloudy. I looked into my heart for the answer.
"I'll go with him." I knew what I couldn't do; I couldn't leave my son alone on his first day on earth. I had to go with him.
This might seem like an easy decision to make. But for me, living in Japan, I relied quite heavily on my wife to do things for me. Going to a big hospital by ambulance whilst my wife lay unconscious having just given birth to our sick son, was not yet on my list of 'things I can easily do on my own.' My instinct was to wait for her, and we'd do it together. I instinctively knew that was not an option in this case.
I wait another 30 minutes or so. Talk to a few nurses about some things. One of my old students works at the hospital, so I talk to him a bit. He tells me to cheer up! I'm a father! I tell him my son is sick. "No, no, I'm sure he's fine. Smile!" I try to oblige him with a small smile. He leaves. When I see him next, his smiles are also forced.
I take the first ambulance ride of my life.
It's funny. I realised during that ride; I've never truly heard an ambulance siren before. They're always passing by; a dynamic chorus, rising and falling; always a fleeting experience. But they're actually incredibly constant and unwavering. The siren blares non-stop for the entire journey. To other people, it fades in and out, morphs with the doppler effect. A fleeting glimpse into start reality; mortality. But for me it never ceases. A screaming reminder of the gravity of my situation, as though each blare of the siren is reaching into my chest and carving the words into my heart, "THIS. IS. AN. EMERGENCY"
The paramedics fussed over my sons squirming body a bit during the trip. Not enough to really worry me. Although a few times they exchanged words, took a few too many close looks, and forced my heart rate up a bit. I listened for his voice. The siren drowned it out, or there was none. Mostly, I just thought he was a cutie. So what if he has a few extra toes and fingers. He's a super cutie. He'll be OK.
He looked so innocent. So fragile. He was moving, but not much. But how much do new born babies move? I had no idea.
We arrived at the hospital, and I followed the paramedics through the winding corridors of the Japanese hospital. We took the elevator up a couple of floors to what I would later learn was the NICU (Neonatal Intensive Care Unit). I watched as the hospital staff led the trolley on which my son lay through the large doors and out of view. I took a seat in the waiting room where I would remain for the next hour, having a few difficult conversations in broken English or Japanese with random nurses and doctors.
I was surprisingly calm. I didn't know how sick my son was at the time; I just knew that he needed some extra care. He'll be fine, I told myself. A few days or so and he'll be out of here and back with his mum, as he should be.
Eventually, a nurse came to get me, and invited me into the room to see him. I excitedly, and very casually, walked with the nurse as she introduced me to all of the safety/sanitary procedures required when entering the ward: checking my body temperature, wearing a face mask, putting my belongings in a locker (no phones allowed), exchanging my shoes for slippers, and washing my hands multiple times throughout the trip from entrance to the main room.
The room was full of lots of big plastic boxes surrounded by monitors. Lots of beeping and blooping. Nurses wandering back and forth between the boxes, checking on all the little babies within. It was a nice, peaceful environment. Very professional. Clean. Calm.
And finally... there he was. Right in front of me, within my grasp... so tiny and so fragile. I wanted so badly to wrap my arms around him, to hold him and tell him that his mummy can't wait to meet him. To give him the kisses that she couldn't. The most I could manage was to gently stroke his feet and legs with my fingers, afraid to hurt him or disturb him; wanting only for him to be as comfortable as possible in his warm little bed. The doctors would fix him, and then I'll get all the cuddles I've waited for.
I met my son's doctor - she spoke English! We talked about my son's condition, and I was assured that he was stable at the moment, but would probably have to stay in the hospital for a couple of months. I remember thinking to myself that it wouldn't be that long - he'd be out in a week or two. He's MY son! He's strong. He'll surprise them all with how strong and healthy he really is.
The doctor gave me some photos of him to give to my wife, who had not yet had the chance to see him. I left the NICU and went downstairs.
Leaving the hospital, I paused outside and took a deep breath. I'm a father... wow. OK now to find my wife. I begin the 1 hour walk back to her hospital.
I picked up my phone and started to record a voice message for my mum updating her on the situation.
There's something about talking to your mum that forces you to really FEEL emotions that are lying dormant within you. You think you're totally fine. Totally relaxed, confident, dealing with the situation like an adult. "I've got this," you tell yourself. And then you hear your mum's voice.
This was the first time I cried for him.
The tears that fell can't really be attached to any one emotion. They were tears of an overwhelming cascade of emotion. A cascade that combined the intense joy of becoming a father, with the crippling fear and distress of a loved one's struggle for life, and the shock of a very sudden and very unexpected change in life.
The walk; I actually remember very fondly. It was the first walk of my fatherhood. I did it completely alone, in the dark, in a country across the ocean from my family, and away from my wife. I walked away from my son, but towards my wife, my love. I actually felt wonderful.
My wife and I had a little cry together. We sat together, holding hands, and looked at pictures of our new baby boy. She had heard some brief details about him, but nothing too serious. She knew he was sick, but she was just happy he was alive. Mostly, we just exchanged loving words about our son, and prayers that he would be well.
Honestly, I never considered that he would die, or that he had any major issues that weren't just cosmetic. A few extra toes n fingers... so what? I was never afraid that he would be taken from us. I never even thought he was really sick. Trisomy? I had never heard the word before, and wouldn't hear it until a week later when my wife mentioned it... almost in passing. And anyway, I thought... he'll be different. He'll be the exception. He'll be the talk of the trisomy community! The most able trisomy child that ever lived!
I had no idea of the intense fight for his life that was ahead of him. The brutal challenges that he would have to face and overcome to survive, and the absolutely enormous changes to all of our lives that were to occur.
Our trisomy life was about to begin.
A hole in his head. Part of his scalp is missing.
I can't really see his hands and feet. But the top of his head is all red. Redder than it should be. It looks bad.
I take in all of this information as though it is a list of arbitrary facts. I comprehend and accept it all. Just looking... and nodding.
The doctor asks, "do you have any questions?"
My mind struggles to process what I've just been told. My only thought is of my wife. My companion in life for the past 7 years. My love.
"Is my wife OK?"
"Yes."
"OK. That's all."
The doctor gestures towards the door behind me.
A nurse leads me out of the room. I turn and follow her, in a daze. Feeling nothing.
My only thought is, "My son is..."
"...broken."
This thought echoes through my mind.
As I pass the other nurses standing around, one touches my arm, "are you ok?"
I glace vaguely towards her and nod.
The nurse leads me back to the waiting room.
Just to pause for a moment:
It's difficult to describe this experience by doing anything other than listing a series of events and actions. I immediately entered 'survival mode' the moment I left that operating room. And for me, that involves very little thought, very little discernible emotion - just one thing at one time; one foot in front of the other; just do what I have to do in each moment.
Thinking back, I stayed in that survival mode for quite some time; months even. I just took all of the facts in as they were presented to me. Input information, process, output decision. This was how I made it through that period in which my son was fighting for his life, and we were fighting right along with him. My wife and I supported each other throughout all of the decisions we had to make. Honestly, for me, those decisions were the easy part - I had a single motivating force that completely eclipsed all others; give my son a happy and comfortable life. That's all. If it helped to achieve that goal, I wanted to do it.
So I'm back in the waiting room...
I immediately reach for my phone to contact my family; my mum and brothers. I told them everything I knew. At first, one or two of them didn't believe me. "oh come on!".. "stop it!". Totally fair enough; it's the kind of inappropriate silly joke I might tell.
I assured them that I was very serious. He is sick.
Oh... ....
The mountains of support and concern that followed will live with me until the day I die. My family never once thought of themselves in all their offers to fly over to Japan to help, comfort, support, just to be close. I declined all their offers, but noticed and appreciated every single one to my core.
When the nurse returns, she tells me that my son will be taken to another larger hospital by ambulance. She asks me if I want to go with him or stay and wait for my wife to awake.
My first thought, to which I felt completely confident, was "No... I want to stay with my wife. I can't go alone to a hospital in Japan without her. How can I do that....?" My mind was so cloudy. I looked into my heart for the answer.
"I'll go with him." I knew what I couldn't do; I couldn't leave my son alone on his first day on earth. I had to go with him.
This might seem like an easy decision to make. But for me, living in Japan, I relied quite heavily on my wife to do things for me. Going to a big hospital by ambulance whilst my wife lay unconscious having just given birth to our sick son, was not yet on my list of 'things I can easily do on my own.' My instinct was to wait for her, and we'd do it together. I instinctively knew that was not an option in this case.
I wait another 30 minutes or so. Talk to a few nurses about some things. One of my old students works at the hospital, so I talk to him a bit. He tells me to cheer up! I'm a father! I tell him my son is sick. "No, no, I'm sure he's fine. Smile!" I try to oblige him with a small smile. He leaves. When I see him next, his smiles are also forced.
I take the first ambulance ride of my life.
It's funny. I realised during that ride; I've never truly heard an ambulance siren before. They're always passing by; a dynamic chorus, rising and falling; always a fleeting experience. But they're actually incredibly constant and unwavering. The siren blares non-stop for the entire journey. To other people, it fades in and out, morphs with the doppler effect. A fleeting glimpse into start reality; mortality. But for me it never ceases. A screaming reminder of the gravity of my situation, as though each blare of the siren is reaching into my chest and carving the words into my heart, "THIS. IS. AN. EMERGENCY"
The paramedics fussed over my sons squirming body a bit during the trip. Not enough to really worry me. Although a few times they exchanged words, took a few too many close looks, and forced my heart rate up a bit. I listened for his voice. The siren drowned it out, or there was none. Mostly, I just thought he was a cutie. So what if he has a few extra toes and fingers. He's a super cutie. He'll be OK.
He looked so innocent. So fragile. He was moving, but not much. But how much do new born babies move? I had no idea.
We arrived at the hospital, and I followed the paramedics through the winding corridors of the Japanese hospital. We took the elevator up a couple of floors to what I would later learn was the NICU (Neonatal Intensive Care Unit). I watched as the hospital staff led the trolley on which my son lay through the large doors and out of view. I took a seat in the waiting room where I would remain for the next hour, having a few difficult conversations in broken English or Japanese with random nurses and doctors.
I was surprisingly calm. I didn't know how sick my son was at the time; I just knew that he needed some extra care. He'll be fine, I told myself. A few days or so and he'll be out of here and back with his mum, as he should be.
Eventually, a nurse came to get me, and invited me into the room to see him. I excitedly, and very casually, walked with the nurse as she introduced me to all of the safety/sanitary procedures required when entering the ward: checking my body temperature, wearing a face mask, putting my belongings in a locker (no phones allowed), exchanging my shoes for slippers, and washing my hands multiple times throughout the trip from entrance to the main room.
The room was full of lots of big plastic boxes surrounded by monitors. Lots of beeping and blooping. Nurses wandering back and forth between the boxes, checking on all the little babies within. It was a nice, peaceful environment. Very professional. Clean. Calm.
And finally... there he was. Right in front of me, within my grasp... so tiny and so fragile. I wanted so badly to wrap my arms around him, to hold him and tell him that his mummy can't wait to meet him. To give him the kisses that she couldn't. The most I could manage was to gently stroke his feet and legs with my fingers, afraid to hurt him or disturb him; wanting only for him to be as comfortable as possible in his warm little bed. The doctors would fix him, and then I'll get all the cuddles I've waited for.
I met my son's doctor - she spoke English! We talked about my son's condition, and I was assured that he was stable at the moment, but would probably have to stay in the hospital for a couple of months. I remember thinking to myself that it wouldn't be that long - he'd be out in a week or two. He's MY son! He's strong. He'll surprise them all with how strong and healthy he really is.
The doctor gave me some photos of him to give to my wife, who had not yet had the chance to see him. I left the NICU and went downstairs.
Leaving the hospital, I paused outside and took a deep breath. I'm a father... wow. OK now to find my wife. I begin the 1 hour walk back to her hospital.
I picked up my phone and started to record a voice message for my mum updating her on the situation.
There's something about talking to your mum that forces you to really FEEL emotions that are lying dormant within you. You think you're totally fine. Totally relaxed, confident, dealing with the situation like an adult. "I've got this," you tell yourself. And then you hear your mum's voice.
This was the first time I cried for him.
The tears that fell can't really be attached to any one emotion. They were tears of an overwhelming cascade of emotion. A cascade that combined the intense joy of becoming a father, with the crippling fear and distress of a loved one's struggle for life, and the shock of a very sudden and very unexpected change in life.
The walk; I actually remember very fondly. It was the first walk of my fatherhood. I did it completely alone, in the dark, in a country across the ocean from my family, and away from my wife. I walked away from my son, but towards my wife, my love. I actually felt wonderful.
My wife and I had a little cry together. We sat together, holding hands, and looked at pictures of our new baby boy. She had heard some brief details about him, but nothing too serious. She knew he was sick, but she was just happy he was alive. Mostly, we just exchanged loving words about our son, and prayers that he would be well.
Honestly, I never considered that he would die, or that he had any major issues that weren't just cosmetic. A few extra toes n fingers... so what? I was never afraid that he would be taken from us. I never even thought he was really sick. Trisomy? I had never heard the word before, and wouldn't hear it until a week later when my wife mentioned it... almost in passing. And anyway, I thought... he'll be different. He'll be the exception. He'll be the talk of the trisomy community! The most able trisomy child that ever lived!
I had no idea of the intense fight for his life that was ahead of him. The brutal challenges that he would have to face and overcome to survive, and the absolutely enormous changes to all of our lives that were to occur.
Our trisomy life was about to begin.
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