June 21, 2004
Today is the longest, brightest day of the year. The sun is just passed its highest point above us. At 12:48 this morning we began the long journey back into the darkest depths of winter.
I know that this will be the last time I am allowed to hold his physical body. It is a vessel which has been so degraded by drugs that it is swollen, disfigured, failing to support life. His eyes are glassy yellow marbles. I look into them and know that he is pleading for me to let go. He is much too pure to have to endure such suffering. One so young does not deserve this miserable fate. I set intention for him to be without pain.
Three hours ago I’d gone to bed, to sleep the non-sleep of a mother racked with fear. I’d retired to a cot in a quiet room set aside for the restless mothers of the children being cared for on this ward. Mere moments after closing my eyes, I can faintly hear alarms chiming from the I.C.U. A phone set near the door rings. There are two other women stirring in the room. The three of us snap to attention, glancing wearily at one another, each of us holding our breath. I instinctively know that the fateful call is for me. It is the doctor calling from my sons’ bedside.
I can’t help myself from wincing at the sigh of relief coming from the other two nervous women in the room. They lie back down for some rest, while I pull on my sweater and hurry to my two and a half month old infant son. When I get there, he is surrounded by a team of late night emergency doctors. A feeling of panic is evident among them. My baby is hooked up to a machine that breathes for him. Tubes snake down his nose, they have been feeding him for three weeks. His limp body seems too tiny to endure much more. I know his immense strength, impossible though it seems.
One of the doctors catches my eye, and motions for me to join him in a corner of the room. I take a sharp breath in, and desperately try to prepare myself for the impending news.
“Your sons’ blood pressure is dropping rapidly,” he begins, tentatively. “We have been able to keep his heart beating using a synthetic adrenaline for the past few minutes. It seems that without it, his heart will inevitably stop.” He paused, allowing me to absorb this disastrous information.
“I’m not sure I understand,” I reply, slowly shaking my head. With a sympathetic nod he continues.
“We can give the adrenaline for as long as it takes for you to say good-bye. When it is discontinued, he will die. At this point, there is nothing else we can do for him…”
Each and every doctor and nurse in the room is staring at me. They are poised, waiting to see my reaction. All I can do is simply nod. I gather myself into a sort of numb submission. A nurse guides me to call my loved ones from a phone beside his bed. I dial my parents first. My moms’ voice is groggy and disoriented when she answer the phone. She and my father live only a few blocks from the hospital, but her voice sounds like she’s miles and miles away. She is baffled by my calm demeanor as I tell her very plainly that my son will be dead by morning.
“You need to come now. Come and say goodbye to him.”
“No,” she is protesting as I hang up the phone, “…he seemed to be doing much better…”
And he had seemed much better. My mother had visited yesterday, as she did every afternoon when she finished work. She always made sure that I had a hot meal and clean clothing while I held my vigil beside him. She would chat with the doctors who came by for the evening rounds, and sit with him while I had a shower or took some fresh air. During her most recent visit the doctor had presented her with a hopeful outlook on a new plan for his treatment. This was Sunday morning. On Friday afternoon we had finally gotten some insight as to what was actually wrong with him. After what seemed like countless trial and error procedures, the specialists here had finally figured out what was causing his sickness. During a conference with a team of hospital officials, it had been decided that on Monday morning we would take him home to continue palliative care. It seems, though, that all of the trial and error had caused significant damage to his vital organs, mainly his heart and liver. The new treatment plan was too late…
I have to make one more dreadful phone call. I pick up the phone again and dial his father. It takes a few tries before he eventually answers his cell phone.
“Yeah?” he grumbles, “who is this?”
“You need to come to the hospital,” for the first time, my voice cracks with the weight of what I have to tell him.
“What do you mean?” he is confused. It is four a.m. ” I am out of town for work. I can’t come there right now…”
“I’m sorry,” I mumble, “you have to come and say good-bye to him.” It is all I can muster into words. My mouth feels clumsy, like I’m not in control.
“What does that mean?” he is even more confused, and starting to pick up on the dread in my voice. “Are you sure you’re not over reacting? I know he’s really sick, but he’s going to be ok.” He is trying to soothe me. “What did the doctor say?”
I tell him exactly what they had explained to me. I tell him that I love him, and that it’s almost over. I hang up the phone without waiting to hear any more of what he has to say. Levi’s pediatrician is rushing into the room. One of the nurses had called him at home. He consults with the night shift doctors, and checks their chart, shaking his head. He comes to me, and confirms their diagnosis.
“We will make him as comfortable as possible, I am so sorry.” He hugs me.
I sit blankly in the rocking chair beside his bed, where I have cradled him day and night, praying for the time to come when we could be at home together. A nurse comes to hand him to me for one last cuddle. He seems to be caught up amongst an octopus’ tentacles, a tangle of wires and tubes. I do my best to cradle him against me without disturbing any of them. I sit that way for hours, it seems. Five a.m. comes; I am impulsively rocking him back and forth. His little rosy cheek is pressed to mine. I whisper over and over again that I love him without end. My parents and my brother are stumbling sleepily into the ICU. I watch as the doctor tells them what he has already told me. My mother clutches at my young brothers’ sleeve; her face is twisted with disbelief. They huddle around us, stroking my hair, leaning in to kiss him and me. Tears are streaming down each of their faces.
At some point the pediatrician comes forward with a clip board. He hands it to me and explains the paperwork that I need to sign before they can remove my son from his life support systems. I ask him again, begging this time for a different opinion, if this is absolutely unavoidable.
“The only thing keeping him alive right now is the drugs. He is in a lot of pain, and his heart will not continue to beat without them. His organs have all shut down, and can no longer sustain life. The longer we give him the drugs, the longer he stays in pain. It is time to let him rest.”
My heart is shattered as I sign the papers and hand them over.
The nurses slowly start to unhook him from various machines, watching me carefully out of the corners of their eyes. Desperate panic takes hold of me as the last of his life lines is severed. I can hear myself scream at them.
“DON’T,” I scream, although deep down I know it’s absurd. “He needs those… please DON’T…. don’t give up…”
A hand rests on my shoulder. My dad is close to me, his face crumpled with the weight of his grief.
“Honey, let him be with no suffering. He has to go now. It’s time he moves on from his pain. It’s too much” His voice cracks.
I feel as though I am squeezing him too hard… he is turning blue. There is not a single wire or tube left to hold him back. His little lifeless body is finally free. His heart beats ever so faintly. Alarm bells still echo in my ear drums, my pulse mimics their screams as I feel him letting go. A well of false hope floods me with belief that he might live on without the machines, without the drugs. A young mothers’ last glimmer of faith. Someone reaches to turn off the beeping monitors, rendering the room completely silent. The last of the adrenaline wears off with a few final flutters of his tiny heart. I am sobbing into the crook of his neck. The pulse has stopped. My fingertips lightly trace the outline of his sweet face. His treacherous journey in a human body is finally over. Here begins his journey as a supernatural light being… surely he is destined for much more than this.
An eternity slips by in the misty vapours of those last despairing seconds. Ideas of human importance, of spiritual oneness, are lost on the likes of my scarred and empty soul as of that fateful moment. When I finally lift my eyes from his peaceful sleeping face, I am aware that I am being watched by a team of exhausted hospital staff. It is six a.m. A ragged sob tears through the room as my gaze turns to my family. They are huddled together, leaning against one another for support. They look about as terrified as I feel. A nurse comes forward to receive his dead body. I stand to deliver him to her, and collapse back into the chair. Handing him to her is one of the most wretched moments of my life. I want to sit there forever, clinging to him, hoping he will revive himself. She wraps him in a soft blue blanket and lays him gently to rest in a sterile metal crib.
Over the next hour or so, my empty shell of a body goes through the motions of dealing with all of the paperwork that one must sign when a loved one is lost. Bureaucracy can be a cruel joke in times like this. I long to lie down and sleep, if only to wake up after a lifetime and realize that this was simply my wildest nightmare. When it is finally time to leave the hospital, the sunshine seems to be mocking me. It is a beautiful, warm summer day, the solstice. The longest day of the year. In the northern hemisphere, we are beginning our descent in to the darkest and coldest depths of winter.