Missing in the Literature 👍

After my interview with Shayla on Tuesday October 20th, I started thinking about what she had said and what is missing in the Child Life Therapy literature.  Shayla talked the concept that often when people think about Child Life it is all "sunshine and rainbows" and helping children in the perfect way, but it is not always that simple.  She told me a story about the night before our meeting that she was called onto a regular floor to meet with a family who's daughter was dying and they wanted an end of life conversation with the family and her two brothers.  This type of interaction with child life is not talked about in the literature as much, or as Shayla explained in any of her courses.  Not only was she there to comfort the patient in her final hour but she also had to comfort the family in the best way possible.  As mom held onto one brother on one side of the hospital bed, the best intervention that Shayla could come up with was to kneel down and hug the second brother.  She explained that it probably wasn't the protocol or best practice but it was what the family needed at that time.  The reality is not everything can be "taught" in the classroom or found in the readings - it just comes in the moment while you are working to best support the families.  

Why is this not talked about?  It is obvious that there are going to be children in the hospital are are going to die.  So shouldn't it be a more prominent discussion?  Especially when they are terminally ill?!?  What is holding us back?  Do we not want to scare them?  Are we afraid that families will not able to comprehend the reality of death?  Maybe, it is just that we don't know exactly how to talk about death.

One of my favorite courses that I took at Rhode Island College was a nursing course with the focus on Death and Dying.  It was early on in my education at RIC but rereading some of my essays, I still have the same opinion on death and dying as I do now.  I am not and have not been afraid of dying for as long as I can remember.  I have faced my own morality on numerous occasions and my doctors have repeatedly said that I am a medical miracle.  This course showed me that my thoughts on death are not typical for many people.  Most people my age have not had to face death or think about it at all, and many of the people who have had to face death are apprehensive about it.  I am not.  I wrote in one of my essays for NURS 312:

"It has interesting that the people I have talk to about death who have chronic medical illnesses, are the ones who have accepted their death and are no longer afraid.  It is when people are not confronted with their own mortality throughout their lives that they do not have a chance to understand that death does not have to be as scary as they make it out to be.  I have said my goodbyes and if something were to ever happen, I would be more ready to die than an average person my age.  It is unnerving for me to say that to most people, if they don’t know my history and story but to me it is very normal."  

I read two of my all time favorite books while in that course, Tuesdays with Morrie and The Last Lecture.  Both have the prevailing theme of dying throughout the entire story and yet I still hold them both close to my heart.  When talking about both to almost anyone, they say they have watched Tuesdays with Morrie on film but not read the book and many haven't even heard of The Last Lecture.  As a society are we more ok with watching and hearing about death on the big screen than we are with reading about it or being around it in real life?  Hundreds of people died in the Titanic, and yet it is one of blockbusters biggest hits.  Why?  In talking to Corinne, it made me think that as a society we are filled with death and dying and yet we have become desensitized to it on a global scale but not in an individual and personal way.  There have been more school shootings and mass killings in my life than ever before.  And yet, our society keeps going on each and every day.  Even in this pandemic, thousands are dying but we keep trying to continue our daily routines.  Is that because we don't like to face the idea of death?  We don't like to think about it, it makes us uncomfortable and thus it isn't a big deal?  It won't happen to me so why bother?  

My husband lost his father to a brain tumor when he was only ten and we lost his mother to uterine cancer when he was 24ish.  While his mother Carole was dying, we went to the hospice center on multiple occasions.  However Matt was always very noticeably uncomfortable.  To this day, I remember the day we got the phone call from the doctors saying she probably would not last the night and Matt refused to go up to see her.  I argued with him that it was not about us, the people who were living but about Carole and that she needed someone there but he was adamant about not going.  To him, he did not want to watch another parent die and who was I to push him?  His brother had up and left for another state with everything that he wanted of his moms leaving Matt to deal the house, the finances, the funeral planning, and the inevitable loss of their mother all while finishing his semester at URI.  To this day, Matt does not like to talk about either one of his parents, which to me is very sad because I like to remember them - I have pictures of them all over the dining room and would love to know about them to tell our children one day.  I have had my fair share of loss throughout my years, nothing compared to Matt but I feel as though my thinking on death and dying is so different than most.  I like to remember those who have passed, through pictures, videos, even celebrating their lives, however for Matt he is still very uncomfortable about the whole idea of death.  It in interesting that none of my other interviews talked about death really at all - which is very concerning - do they themselves not like to talk about it or have they not had to deal with it as much in their positions?  Is that because Shayla is in a more urban part of the country where death and dying of children is more of a regular occurrence?