TABLE 3

The Simultaneous Coexistence of Hope and Prognostic Awareness

ParentNarrative Excerpt
1“Hope is the antithesis of despair, not [the antithesis of] reality. The awful, painful, unavoidable reality from the moment of diagnosis, and in ever-increasing measure was that my beautiful little girl was going to die. In the midst of that sure and certain knowledge, resided hope.… To be hopeful is a function of the heart and a decision of will, to be realistic is merely a function of understanding the most likely outcome. They are not mutually exclusive, nor are they at odds with one another. They do not need to be in balance, there is not a sliding scale that allows them to coexist by degrees. They are independent of one another and they are as individual as are we. Two parents, a parent and a clinician, can share the same view of reality and not share the same hope.”
2“Partner with us and witness the transformative love of hoping for the impossible and the improbable while accepting the painful reality that our rare and beautiful child is gracefully exiting this world.”
3“I feel like I was simultaneously hopeful and realistic for the entire trajectory of [my child]’s illness and death. In fact, about a week before he died, my husband, two other children, and I had a conversation around [my child]’s bedside. We still hoped that God would intervene and do a miracle in [my child]’s body. At the same time, it looked like the miracle wasn’t going to happen and that [my child] was most likely dying.”
4“We continued to pray for a miracle.… It was a dance. A dance between our desire and His desire, until her desire became what seemed to be evident. Then all we hoped for, for her, was heaven.”
5“We had a constant hope the whole journey that [my child] would be healed and he would live a long life. I feel like that was kind of like a big umbrella over the whole journey. But there was also more ‘realistic’ hopes under that big one…while maintaining all of these different hopes for [my child]’s life, we also knew his prognosis.”
6“Hope and realism were in conflict the whole duration of [my child]’s treatment. Even when the latest scans would bring good news and hope would rise, realism was like the devil on the other shoulder, always saying ‘Yeah, but…’ When the doctors told [my child] there were no curative options and it was time to go on hospice, realism had the upper hand by far, but hope was still there.”
7“However, until the very end of [my child]’s life, I remained hopeful that he would be one of the few patients that survives despite the odds and grim prognosis the doctors gave us.”
8“When we were told that [my child] was terminal, we understood what that meant, and we knew most likely he would die from his illness barring any other tragic event or ‘a miracle’.… That being said, I remember telling someone, ‘We are living everyday as if it could be [my child]’s last but also as if he might live forever.’ That was hope.… The knowledge was ‘[my child] was probably going to die,’ the ‘hope’ was he just might be the exception.… In the darkest places of worry, sadness, and fear, there was the tiniest bit of light I would call hope.… I knew and completely understood what we were facing, but in hope, I was not giving up on [my child]…when someone plays the lottery for a chance to win…the odds are terrible and are stacked against anyone who buys a ticket, but having a lottery ticket in hand for one day gives a person the chance to dream and wonder.… Hope gives you the opportunity to dream and wonder about the possibility of your child beating the odds.”
9“The only way I could use to explain the way I felt during the time near the end of [my child]’s life is the image of the spinning dancer. Most of the time it seems so clear to me and easier to see that the dancer is spinning clockwise. Other times when I look through my peripheral vision or I am not looking so intently, my perception changes and I can see the other possibility (she is turning counterclockwise.) The reality is that there is not enough visual evidence that tells me one way or the other, but my focus tends to determine what I see…I am thinking that from a clinician’s standpoint, they are often wanting parents to see the reality of which way they see the dancer spinning: perhaps counterclockwise (ie, that a child is likely to die). A parent on the other hand wants to see the more natural path of clockwise (ie, the child will continue to live) because it is so ‘counter’ to think otherwise of our children.… It seems the ideal situation is when a clinician can use his/her communication skills not to convince a parent the dancer is spinning counterclockwise, but that that possibility exists. Somehow (through ‘I wonder’ statements or ‘I’m worried’ statements) they help the parent even for a moment to have a different focus and see a different reality while still acknowledging the existence of another viewpoint based on a lack of perfect knowledge. I knew as a parent that the possibility of [my child]’s death was a reality I had to face, but I coped by viewing the situation through the hopeful/easier viewpoint that things would work out and he would be healed…I always defaulted to my preferred reality, while still acknowledging on some level that least a few times I had seen (the spinning dancer optical illusion) spin counter to my desires, and that possibility did indeed exist.”