I prepared to let go and wished for more time. There was nothing left but to let my youngest son be at peace. Tomorrow we would unplug the machines.
His transplanted liver was failing, and he was too sick to get another. He coded three days earlier. Now, beneath the sedatives, paralytics and seizure medications, he was convulsing continuously.
There was no hope for meaningful recovery. As a physician, I knew it was the right choice. As a mother, I was heartbroken. How could I reconcile the rightness of the decision with something that felt so wrong?
The only life left to my son should his seizure stop was to lie in bed unable to move, talk or even recognize he was alive. Soon his liver would stop making clotting factors. He’d bleed from his gut, nose and eyes. Eventually, he’d succumb to overwhelming infection or multi-organ failure. That was not life; it was hell.
I had explained all this to my husband and my other two sons. They asked the intensive care attending physician for hope, for other options. He told them there was nothing else to be done.
We cried, hugged and decided to let him go.
My siblings arrived from around the country to say good-bye. We gathered at his bedside. The blue light of the nighttime ICU reflected off tears sliding down our cheeks, giving them a strange beauty. I found comfort in my family’s presence.
Six days after his twenty-ninth birthday, with a doctor and nurse bedside him, we waited for the end. The doctor asked us to stand facing away.
After a few minutes, we were allowed to turn around. With the breathing tube and tape gone, we could see all of his face, yellow against white sheets but handsome still. Everyone reached out to caress him. Slow measured breaths passed through his nose and lips. The pause between each breath stretched out until there were no more.
The doc placed his stethoscope over his heart, listened, stepped back and said, “It’s over.”
My husband wept, shoulders heaving. My remaining sons draped their arms across him. My brother and sisters leaned into one another and cried. I gazed down at my lost son, my sorrow too deep for tears.
The only things left were memories and hope. Hope he was loved enough, felt loved enough, and that his life was enough.
Mary Chris Bailey
St. Pete Beach, Florida
9 thoughts on “The Hardest Decision”
With a heavy heart…I was finally able to read this. Such a difficult time in our lives, but not to be forgotten. Our Bryan was such a wonderful soul with his endearing smile. MC… beautifully done!
Love,
Colleen
He was a gift and your story will help others when they need it most. Thank you for sharing such a painful and personal moment.
Beautifully written. I am grateful to hear the story, because I didn’t know the details. I never wanted to cause you more pain by asking you to retell. I also miss him still. His time was too short, but he really made the most of it. A very remarkable man.
Thanks to everyone for your heartfelt comments. This was obviously difficult to write so your comments help.
It is part of a memoir I have written to give voice to the challenges families with children with chronic illness face daily.
Love you, Mary Chris. I did know about this. Thanks for this gift.
I cannot imagine the pain and sorrow after fighting so long. The finality of that scene is very heavy.
Believe he was loved enough and felt it. His life was his. Memories of him continue to bless the clan. xxx
Heart wrenching. Beautifully written. His life was enough!
A heartbreaking reality, Mary, thanks for sharing it. Sending blessings your way.