Growing Up Dying: Helping Children Find Their Voice

When I was a little girl, as young as five or six, I remember having a sense that cystic fibrosis was not a curse or a mistake. I remember distinctly feeling that my disease was something I was given on purpose and was something that I was meant to learn and grow from. At the same time, the cultures in which I lived, the culture of my family, of healthcare, and of society at large, were all giving me a different message.

In elementary school, I had several teachers who, with pity in their eyes, would tell me how sorry they were that I had been given “the short end of the stick.” One teacher remarked that “no one should ever have to suffer the horrible things” that I would suffer due to living with cystic fibrosis. My sense that this disease was a gift began to transform. From all of the information around me, it became clear that I should not feel good about having this genetic disorder but, in fact, that I should feel very bad about it.

As adults caring for sick or dying children, we must understand that every word, every tone in our voice, and every facial expression is a clue that children will use to piece together the truth of their illness. As a sick child, I often was unsure about the facts of my health status and had no larger context for it other than the knowledge that I was different from my healthy peers. I looked to those around me to guide me, to tell me if what was happening to me was “good,” “bad” or scary. I took my cues and acted accordingly.

Many of my beliefs about cystic fibrosis itself were based on rumors and half truths. Another elementary school teacher told her classroom that I would be dead by the time I was 21, and this rumor got back to me. This I took as truth and spent nights awake thinking about the number 21. During clinic visits, my mother and the physicians sometimes spoke in hushed tones in the corner and I listened for more clues about what was happening with me, basing more and more of my understanding on a word or phrase taken out of context. My family and my healthcare providers sought to protect me from the grim realities of the illness but instead only allowed me room to let my imagination run wild. As we all know, the imagined is often far worse than the reality.

During my first hospital stay at age 12, my own mortality became very real to me. A ten-year-old boy with cystic fibrosis died down the hall from me. I once again put clues together and formulated ideas about the meaning of having a short life and leaving behind a grieving family. Many things about this picture pulled at me but perhaps one of the more difficult was this feeling that I, as an individual, was yet unknown. I could feel potential and uniqueness inside of myself that had not begun to outwardly manifest. This left me with a desperate desire to be seen and acknowledged before it was too late.

My desire for acknowledgement was not unique. For many people, a great psychological need at end-of-life is to know that we have made a difference or “left our mark on this world.” This need is not different in children. Seeking ways in which children’s personal philosophies can be embodied can give them the opportunity to see their legacies come to life. This can give them the peace and satisfaction of knowing they will leave this world a little better than when they arrived.

Such was the case with Brendon, an eleven year old boy living with end-stage leukemia in Washington. On his way home from a clinic appointment one day, he noticed a group of homeless people in a nearby park. Brendon found this sight to be unfair and stated "They're probably starving, so give them a chance." His family responded and made 200 sandwiches, helping those hungry and in the park and allowing Brendon to see his own legacy of compassion in action.

It can be a mistake to assume that sick or dying children are unaware of what is happening to them. In my life, thoughts of my illness and death were always at the front of my mind but something I felt was necessary to keep to myself. Adults asserted that these topics were off limits because of my youth but, looking back, I believe it more often had to do with their own discomfort. A child dying in our culture is considered the “worst-case scenario” and, as a very sick child, I felt the weight of that belief. I had things worthy of saying about my circumstances but did not feel I had a voice in such matters.

Six-year-old Elena from Chicago might have felt the same way I did. As she was dying of a brain tumor, Elena secretly wrote notes to her family and hid them in backpacks, in books, in dresser drawers, between dishes in the china cabinet and in photo boxes. After her death her family began to find these notes. As it turned out, she left behind hundreds of messages. While I can’t know what Elena was thinking, I imagine she used these notes as a way of saying what needed to be said even though she felt the same pressure protect her family from her reality.  

Of course, being open about such thoughts and feelings would be the ideal. Finding ways for children to participate in the shaping of their legacies can be healing for both the children and the family. For example, we all have family stories we tell about deceased persons whom we love, and often these stories are passed down through the generations, woven into the family tapestry. Too often, we wait to tell and cherish these stories until after a loved one has died. If a child is dying (or an adult, for that matter), it may be heartwarming for him or her to know which personal stories will be passed down through the ages. Will they be funny stories? Stories about when the child was particularly brave? The story of this child’s birth? Whatever the stories may be, sharing such memories with dying children will reassure them that they will never be forgotten while offering them the chance to add insight as to how they would like to be remembered.
 

Giving dying children the opportunity to express who they are and what they believe is the first step in allowing them to leave behind a piece of their own individuality. By thinking strategically, it is possible to take these personal beliefs and expressions and move them into action. However it may manifest, it can be gratifying for children to see that they have the ability to impact the world around them. In addition, having this kind of emotional and practical structure can encourage bonding and sharing between grief-stricken family members and the dying child. Even in the face of such a painful loss, there can also be joy.  

Tiffany Christensen is the author of “Sick Girl Speaks!” and a public speaker living in Chapel Hill, North Carolina. To save her life, Christensen has undergone two double lung transplants. Christensen travels the country giving talks and workshops about the patient experience. She currently works with the Chapel Hill based non-profit Project Compassion educating patients, families, healthcare students and professionals about patient advocacy, advance care planning and organ/tissue donation. This article is an abbreviated excerpt from the upcoming Project Compassion publication “Finding Your Voice: A Patient Advocacy Workbook.” www.project-compassion.org and www.sickgirlspeaks.com