The entire day of the decision was filled with things I only half remember.
I know that there are things tucked away in that day worth writing about. Lots of little signs, miracles, and wonders that stopped me in my tracks. I have some things written down in my notebook that will trigger the memories. I have a real hard time opening that notebook.
But for now…
I arrived at the hospital earlier that morning than I think I ever had in all those 15 days. Except for the days I never left.
Yes. I was there long before the sun.
I do remember every detail of waking up…getting a shower…getting dressed…driving across the street to the hospital…taking the elevator to the second floor…I even remember the sweater I wore.
The one I will never wear again. Ever.
Rob was our nurse for the day. Oh! How can I tell you how much I needed that?!?
I so desperately needed that.
Long before everyone started showing up, and as I sat by my son’s bedside, things were being done that seemed so pointless. Things that actually caused me great pain. Like taking his temperature again. Someone came in to stick him for yet another blood sugar level check. A blood pressure cuff was on his left arm…constantly making that r-r-r-r-r-r sound as it tightened around his arm reading his pressure.
Rob! How is all of this necessary? Please make it all stop. Is there any need any longer? Please don’t take any more of his blood or check his temperature, or anything else that you’ve done these past weeks. Please stop.
With that request, I tore loose the blood pressure cuff. I can still hear the ripping of the Velcro and the heavy sigh of air giving way.
I could not take it any more.
Yes, Rob said. I will have them stop.
There was almost nothing hooked up to my son then. Where once there were dozens of wires and tubes and patches there was only a tiny, glowing red monitor on his right ring finger. Keeping track of his pulse.
And I could no longer see that pulse being registered on the monitor screen that I watched like a hawk all those days. Rob turned that off, too. The nursing staff could see his pulse from a monitor at their station. The only signs of life I could see was Michael himself.
All was so quiet then. The only sound was the sound of oxygen from the machine that pumped it into his chest. All of the alarms and bells and whistles came to a stop.
The hour of nine o’clock came and went. There was some kind of delay.
And I looked around the room. So many people. They came in slowly at first, but before I knew it, there were so many people.
Mostly family. Or family of family there for support.
And soldiers. Strong and faithful and beautiful soldiers.
How did they all know?
Word spreads so fast like that. Like fire.
The day had come and the hour was here.
I don’t know how I was breathing. I don’t.
The day before I was told a little about how they would remove my son from his life support. How they would remove the tube that connected him to the machine that helped him breathe. They told me that they would cover the opening in his throat with some type of mesh and he would then breathe on his own.
They would send someone from the respiratory team to our room and do that. It would take very little time. It would not be difficult, they said. Painless, really. A very simple procedure.
The room was full and everyone was talking. Talking. Talking.
I tried to focus. Just focus.
Part of me wanted to tell everyone to leave. Please. Only a few stay.
Michael would be so embarrassed. He would hate all of these people standing around him. Waiting to see what he would do. I promise you, he would hate it.
I was standing at the head of his bed. On his left side with my back toward the door. The curtain drawn around behind me. I could feel it from time to time brush up against me when someone came through.
I could feel almost everything then. Everything.
I must have looked bad. I know that I hadn’t eaten much at all during those hospital days. I knew I weighed less than I probably ever have. My jeans fell loose around my hips. I had to keep pulling them up.
I felt the adrenaline pulse through my body. Not in a good, power driven way that I have come to depend on in my life…no…not like that.
It was that feeling one must feel when they know that at any moment they are going to die.
Those last few breaths and the last few heartbeats are all you have left. I always wondered what that would be like. I know it seems bizarre…but I always wondered what would run through a person when they know that they are dying.
And here we were…the both of us…dying.
I don’t know about everyone…but I know that for me, each and every moment was magnetized. Dreamlike and enormous. I was so keenly present. So keenly aware. Of every single thing going on around me. Everything was turned up. Amplified in slow motion.
Yet in some kind of tunnel.
It’s as if you’re wearing a pair of really good ear plugs. And the loudest of all is the sound of your own breath and your heart beating rhythmically way down in your eardrums. That’s all there is left.
Someone came in from that respiratory team at around 10 AM. An hour later than I had asked. I didn’t mind. I would take an extra hour.
I remember that she came around and introduced herself.
She was so, so young. I thought younger than Michael. How everyone on that hospital staff looked way, way too young to help make hard life decisions like this.
I know I thought this time and time again…How could they ever, ever know enough?
She turned off the machine. At this point everyone…and I mean everyone in that room became eerily quiet. So very still. Not a word. Not even a breath could be heard.
Then with purple gloved hands, she detached the tube that led to my son’s tracheostomy. She then tied something that looked like a bib around his neck. A bib! I knew they had mentioned some kind of mesh…but this was way, way too simple! A stark white bib laying over the open hole in his throat.
That’s all it was.
I had my hand on my son’s shoulder. One on his shoulder and one on his chest.
And in all that silence I heard it.
I was not expecting it and it took me by surprise. Shocking surprise.
I had not thought much about what Michael would sound like when he would breathe on his own. I was not prepared. Not at all.
But let me tell you.
How can I tell you?
My son was not breathing like I thought he would. I don’t know what I was expecting…but it was nothing like I thought.
As his chest heaved the sound that came from the tube in his throat was like that of an animal. Like an animal in great distress.
It was loud. Horrible and shocking.
Like a lonely, roaring, lost, and trying to find his way home kind of animal.
More specifically…it sounded like the roar of a bull.
A wounded, raging bull.
I know I started shaking my head. But I fought the tears. I refused to cry. I would not embarrass my son by crying.
All I could do was close my eyes shake my head.
And the rest of the room was so incredibly silent. I guess we were all in shock.
I think someone from the room went to the nurses station and said that it was way, way too hard and was there anything that could be done.
Because after a bit of time I felt an arm around me and on my left side stood my favorite doctor. The one who always talked to me as if I was really there.
I know this is hard for you. I am so, so sorry. But what you are hearing is quite normal.
He squeezed my right arm…he was being so kind and considerate. His voice was so steady and sure and he was talking so quietly and so tenderly to me. He wasn’t addressing the entire room. Only me. At this attention, my body started to shake. Waves of tremors ran through my body and I could not stop them. Every single visceral organ deep inside my body trembled. I tried to calm myself but the shaking would not stop.
This will, unfortunately, continue until the end. But I am trying to find a patch that will help it some. Once I find the patch, we will place it behind his ear. It will hopefully quiet the noise and lesson the stress of it all.
Yes. Thank you.
I searched my son’s face to see any kind of distress. Any kind of pain. His face had not changed much, except for a little more slack in his lips. His beautiful lips. His face was still the very same. He was still so handsome and still my boy.
My beautiful boy.
It came over me just then how much I loved him. Now, let me tell you…you think you love someone with all you have. You think you care and you feel and you really, really believe that you know. But there’s nothing like the realization that it will be ripped away from you that you finally see.
Just then I was so enraptured with such intense love for my son that I thought it would strike me dead. Right there and then.
The thought flooded me that I idolized this boy.
And God and I wrestled with that.
I put my boy on a pedestal and often catered to him when he should not have been catered to and overlooked some things I should not have overlooked. My heart was often so enmeshed with him that I did not know at times where one of us ended and the other began. I kept all of this so close to my chest. I carried my son in my heart and I swear to you that there was not one single day that I did not wonder about him or think of him or worry about him.
Just then I realized how much I carried. How much I had invested emotionally. It was overwhelming.
No matter what our disagreements were or no matter how long we would go sometimes without talking or seeing each other. No matter what.
No matter what.
The realization flooded me just then that this boy was godlike to me.
And how was I going to go on living? Without him. How?
He was laying there so peaceful and yet struggling for every single breath. Every breath now pulsating under the power of death. Roaring like thunder.
Ripping out my heart.
Oh! How I worshiped him.
My son. My beautiful, beautiful boy.
My Sacred Bull.