Nicholas was the six – year – old only child of Pat. I met the two of them and Pat’s mother, Hazel, in the emergency room when I was doing rounds one Saturday morning. Nicholas had been having some bad headaches, which were getting worse. By the next morning, he was admitted to the pediatric intensive care unit for observation while awaiting results. Through much of this visit he was sleeping but would pipe up sometimes and add to his mother’s and grandmother’s stories about him. They laughed about Nicholas’s love of trees and tree climbing and how he’d scare his mom when he got up too high. They talked about how much he was enjoying grade one and how he never wanted to miss a day. They told stories about his many sleep toys and how he gave two of his favourite toys to the boy down the street, who was sad. They shared how perfect his vision was; he would often tell his mom, from blocks away, the letters on street signs. The visit was peppered with the joy that Nicholas brought to their lives and communicated how he was the “best thing that ever happened to” Pat. (All the names in this story have been changed to protect the family’s privacy.)
When the medical team was called together to meet with the family and share test results, I sat with Pat and Hazel. The ICU doctor opened the meeting. “We are very sorry to say that the thing causing Nicholas so much pain is a tumour in his brain.” She then pulled out the slide showing the tumour and outlined its shape. She continued, “Unfortunately the tumour is too deep for any surgery to be successful. We are also concerned that it is a kind of tumour that is very fast – growing.” Questions surged forth from Pat and her mother: “But what can be done? What can we do?” After a pause, the doctor responded, “We can help with managing his pain. We can make him comfortable. We can probably shrink the tumor a bit with radiation and then get him stabilized enough to go home with you. But we don’t know how long that will be able to last. He will likely need to be hospitalized again.”
Sitting upright in her seat and leaning toward him, Pat pleaded, “What are you saying?! How long does he have?” Pushing his glasses up on his nose and tilting his head in compassion, the oncologist replied, “With kids I’ve known with this kind of tumour, it is usually a matter of months, though sometimes we can be surprised, and it may be a bit longer.” Silence. The devastation in the room was palpable. How could this be?
Nicholas was released a week later. He had radiation treatments that seemed to shrink the tumour somewhat. His pain was managed with medications, and he was able to go back to school and enjoy some of the things he had always enjoyed. Within seven weeks, however, he was readmitted to the ICU. His tumour had grown more quickly than expected, despite the radiation. Soon after admission, he was sedated and needed help to breathe. He did not have a lot more time. Pat talked with me about the previous few weeks—how good they had been, for the most part. She cried a lot and said how she’d tried to stay strong for Nicholas, tried to make it the best she could for him. She told me how mad she had been at first with the diagnosis. She couldn’t believe it. But then, as time went on and some things in Nicholas started to change, she realized she needed to make this time as good as possible for him. She did not want to have any regrets.
“I’ve been thinking about this a lot, and I want to see what can be done,” she told me. “Nicholas has always been an incredibly generous kid—unusually able to share and someone who enjoys making other people happy. I need to do something to honour who Nicholas is. I want to do something to help others. If we are going through so much pain here, I want to see if we can at least do something to help others in their pain. It’s how Nicholas is. It’s how I want to be. I want all of his organs to be given to others who need them. His organs should be fine, I think, and good for others. Then others won’t have to suffer like we are suffering right now.”
***
I spoke with Pat [a few months later, after Nicholas had passed away]. She shared with me that she had received correspondence regarding the recipients of Nicholas’s organs. His eyes had given a little girl sight. One of his kidneys went to a 10 – year – old who had been waiting for ages for a match; the other had been given to someone after a devastating car accident. She had stories of all of the ways Nicholas’s body had given life to other people. She also shared that “Nicholas’s Tree” had been planted at the school with a full ceremony surrounding its planting. Next year, they would mark the day of his death with another ceremony at the tree. They chose one that would grow to be a good climbing tree; Nicholas would like that. She had given his sleep toys—all but one, which she kept for herself—to the little boy up the street. The nighttime prayer he had so proudly learned she found in a needlepoint kit and planned to spend meditative time making it over the next few months. Pat said it would be “something I can hang in my bedroom to remind me each night to say Nicholas’s prayer.” She and her mom were soon to participate in the pediatric cancer fundraising walk, hoping to raise some money so others wouldn’t have to go through the hell they’d been through.
As for herself, she told me, “Sometimes I’m a mess. In fact, most of the time, I feel like a mess on the inside, despite how well everyone thinks I’m doing on the outside. … I still get thoughts about him in the ground, the cold ground. … What if there is no heaven? I get scared that there is no afterlife, and sometimes that really gets me. Other times he feels close, and heaven feels so real, and I think of him playing with friends and not suffering, and I feel better. I imagine him in light and love and warm and safe, looking just like he did in his grade one photo, happy and full of life. I’m holding on by a string sometimes. … When I think about my life before Nicholas, I realize again and again how much he changed me—like he taught me to love like I could never have imagined was possible. … But that’s what is so painful now: I just want to love him now. [Weeping.] … I do love him now. … It’s hard. … I want to hold onto how much I’ve been changed by being his mom. … [Weeping.] But it’s hard.”
We talked for a while, during which time I affirmed that her vision of Nicholas bathed in light and love was a vision of God’s promise that she can trust. After I gave her my number and that of the parents’ bereavement group, we said our goodbyes. “God be with you, Pat.”
***
How is hope present in the story of Nicholas, Pat and Hazel? What are some of the possibilities and limits embedded in this story in terms of hope?
In the face of the devastating illness and loss of her son, Pat intuitively seeks out ways to claim meaning in the midst of pain and anguish. She seeks out ways to honour the meaningfulness of her son’s life that reflect the distinctiveness of who he was in all his uniqueness. For the boy who loved to climb trees, a big climbing tree is planted on a playground for other children to climb. For the boy who shared freely, toys are given to one who holds a special place for him. For the boy who proudly prayed for God’s presence and protection, his mother meditatively needlepoints his prayer from her heart. For the boy who liked to make people feel better, his organs are given that others might have life. In multiple ways, Pat bears witness to the meaningfulness of her son’s life and wrestles forth meaningful possibility out of what is otherwise meaningless tragedy. Her actions express her need to have tangible signs of the ways her son’s life has made a difference. Among many other things, through her actions, she honours the one who taught her how to love.
In the concrete lives of particular people (kids who will climb the tree, the boy up the street, the organ recipients and their families, and so on), precious lives are honoured and even enriched through Nicholas’s death. While it is disturbing to say it, it is also true. At another level, as Nicholas’s life is raised up as one full of meaning, so the meaningfulness of all of life—both actual and potential—is represented and raised up. When one life is reverenced, all life is reverenced. Hope’s possibility is glimpsed as the meaningfulness of life is insisted upon, especially in situations where meaninglessness seems ever present.
There is much in this story that demonstrates the powerful witness of hope as meaning in spite of death, tragedy and sadness. However, for Pat, it does not stop there. While her need to make meaning and bear witness to Nicholas’s life through gifts to others is key, it is also sustained by a sense of transcendent presence, a sense of God. Pat described her faith as “more spiritual than religious” but also kept connected to her local Anglican church, where Nicholas was baptized, which they attended on high holidays, and where his funeral was held. Interestingly, unlike many in such times of horrible loss, Pat does not interpret Nicholas’s death as part of some larger plan of God or the way things were “meant to be.” She does not consider that Nicholas’s death is meaningful in and of itself, endowed with some unfathomable transcendent purpose. Rather, Pat gives all of her heart and soul to witnessing to the meaningfulness of his life, as short as it was—a life that she never seems to question is a gift to her and now also to many others. It is Nicholas’s life, not his death, that Pat seeks to hold up as having eternal meaning and significance.
Though her faith is challenged, the God she believes in and gravitates back to is one who affirms her focused attempts to bring forth meaning out of meaninglessness and honours this eternally. She trusts that her actions are saturated with transcendent meaning which in some way bind her to Nicholas through God, who holds together heaven and earth.
Although Pat, in the face of the tragic loss of her son, struggles at times with the question of the existence of God, she also yearns for God’s presence as that which assures her of Nicholas’s safety and connects her earthly being with her son’s heavenly being. While she wrestles in time with questions of afterlife and whether the meaningfulness of Nicholas’s life ends in the giving of his organs and life to others, she also speaks of Nicholas as alive in heaven, happy with the way his life has made others’ lives better. In one conversation, she noted, “I know it’s crazy, but sometimes I tell God to make sure to give Nicholas a hug for me before bed.” Her relationship with God emerges as that which connects her with her son and opens her up to the horizon of eternity.
Adapted from The End of Hope—the Beginning: Narratives of Hope in the Face of Death and Trauma by Pamela R. McCarroll copyright ©2014 Fortress Press. Reproduced by permission of Augsburg Fortress.
