A Never Ending Battle
This is a story about a patient I took care of who had suffered multiple medical problems her whole life, and she was left with nothing except a mother who fought for her every breath, no matter the cost. This story describes a scenario commonly found in intensive care units or even on general medicine floors, one which we do not always comprehend. It is about struggling to understand when enough is enough, and how difficult it is to reach that conclusion.She has been fighting her whole life.
She, the patient, whose every system has been wracked with relentless disease except for her beating heart. The steady rhythm keeps her alive, on the brink of viability, but hanging by a thread each and every day.
She, the mother, who has given up two other children to mortality's greedy hands. Now she fights for her third. Armor on, shields up, an unrelenting battle to keep life in her child, no matter what form it takes.
I stand in her room admiring the array of notes that decorate her walls, loving annotations written by her mother dictating which TV shows she loves, what she likes to keep in her bed, the temperature of the room that makes her most comfortable, the creams she likes to use on her raw skin. She is speaking for her, saying what she cannot, and it is touching. But when I turn to look at the blank expression fixed on my patient's face, I wonder if these are the messages she truly wants to send.
As I squeeze her puffy hand and listen to the rattle of her labored breaths, I feel her pain. I wonder where she is. I wonder if she knows how deeply her mother loves her, and most of all I wonder what she wants to say, what she would tell us if given the chance.
Hope is not always tangible. It is like a spot of light in the dark, and even the blinded will continue to search for it when all else looks black. As health care workers, we witness the battles our patients and families fight every day, we follow them along their journey, and join them in their search for a miracle.
Who are we to judge?
But we do.
We hurt her. My patient, with every catheter that passes through her body, every medicine, every stick, every turn, her vacant eyes flutter with agony. When is enough, enough? Do we acknowledge the delicate line that appears before us, or sneak by without a backward glance?
The mom, who sits by her bedside day after day, encouraged by the same fluttering of the eyes, by any sign of her lost daughter. We must tread carefully, we must encourage, because even a hint that hope is lost could tear her dreams apart. A whisper of three dreaded letters could signify peace to some, but to her it is only defeat.
I wonder, what takes a bigger heart? Which battle is harder, the one you refuse to lose or the one you choose for forfeit? What if it were me, on either side? Would I keep searching for a miracle?
Who am I to judge?
But I do.Last edit by Joe V on May 22, '11 : Reason: formatting for easier reading
I have been a Registered Nurse for a little over a year. I have experience in Med/Surg and Pediatrics, and as a student I worked in intensive care.
From 'Indianapolis, IN'; Joined Jun '08; Posts: 4; Likes: 22.May 21, '11When I took my son off of life support, I held him and told him, for hours, how much I loved, how brave he was, and how proud I was for the fight he fought. I had spoken for him for so long that I neglected all the signs he gave that told me he wanted to go. But when I realized, I gave him permission. I told him to find the light and that I would always love him, and not to be afraid. But when he missed his first breath, I took it all back. I told him to stay, and that he had to keep fighting. And then I cried, and said I was sorry, he should go.
There is no way to do it right, and no way to be the kind of mom who fights for her kid and also be the mom who lets him go without at all times feeling like a person with multiple-personality disorder. And without questioning your decision at all times. Because when they die, the grief is overwhelming. And the relief you feel makes you feel like a monster.May 22, '11So sorry for your loss SJersygrle. I cannot even imagine it. As a nurse we are taught to do what is best for the patient but we must also be empathetic to the family and what they are having to deal with, and everyone handles it different. the death of a child would be the ultimate loss and as a mother of 3, I admire your strength to let hom go. God Bless You and thank you for sharing. Lisa:heartbeatMay 22, '11GOd Bless you JrsyGrl. I can barely imagine. The article by LMFRN and your response to it have completely rocked my emotions. I look at my own sons and cry.
It is miraculous how the minds and hearts and souls of parents carry on living and healing after the loss of a child. It is every bit as miraculous as your love for your child.May 27, '11OMG, thank you for sharing these stories, they r so sad though, made me cry. The worst thing on earth is to experience death of your child. God bless everyone.Jun 1, '11I have been known to go into my children's rooms while they sleep, just to thank God for their presence in my life. I don't know what I did to deserve healthy, happy children, but I am greatful for it. I can't imagine something happening to one of them, I don't think I would ever be the same again. Prayers to all mothers who have lost a child.Jun 7, '11SJersyGirl,
My boyfriend's son died 3 years ago in July. He was 25 and it was from a drug overdose. I try to support him in the right way, in a way that actually does support him.
Your statement about the conflicting feelings was simple and profound. My boyfriend is not so eloquent with words, I struggle to understand his pain, but I know I can't. Sometimes I ask him what Eddie would say about such and such, or I ask him to tell me a story about Eddie. If you want to share anything else about your son, I'm tuned in.
What has helped you that people have done? What has hurt?Jun 8, '11I am so touched by this post and all the responses. At a nursing home you see people hanging onto life everyday. Some are being kept alive and I always wonder what it is like to be that person lying in bed all contracted, can't communicate their needs. I also wonder if they are still there, thinking , feeling , and hearing. Most times they don't look like they are resting peacefully. They seem troubled. It makes me so sad at times, and I linger in the residents room until my own crying is over to embarrassed to let my colleagues know how I feel. God bless you all for your chosen career and for having the insight to feel for the patients and their families and for discussing it.Jun 17, '11Quote from SJerseygrleI am so very sorry for your loss.When I took my son off of life support, I held him and told him, for hours, how much I loved, how brave he was, and how proud I was for the fight he fought. I had spoken for him for so long that I neglected all the signs he gave that told me he wanted to go. But when I realized, I gave him permission. I told him to find the light and that I would always love him, and not to be afraid. But when he missed his first breath, I took it all back. I told him to stay, and that he had to keep fighting. And then I cried, and said I was sorry, he should go.
There is no way to do it right, and no way to be the kind of mom who fights for her kid and also be the mom who lets him go without at all times feeling like a person with multiple-personality disorder. And without questioning your decision at all times. Because when they die, the grief is overwhelming. And the relief you feel makes you feel like a monster.
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