Moxley

THE INTERNATIONAL JOURNAL OF NARRATIVE THERAPY AND COMMUNITY WORK | 2015 | No.2 www.dulwichcentre.com.au 58
Leaving a legacy’ and ‘Letting the legacy live’:
Using narrative practices while working with children
and their families in a child palliative care program
Linda Moxley-Haegert
Linda Moxley-Haegert has working using narrative practice ideas and in child palliative care
both in Newfoundland and Montreal since 1991. She currently works as a clinical psychologist
in a hospital, school and college setting. She can be contacted at lmhaegert@yahoo.com.
Abstract
This article provides an overview of narrative practices used with children who are dying and
their families in a hospital palliative care setting. Narrative practices of subordinate storyline
development, remembering conversations and definitional ceremony, living documents, and
collective narrative practice, are used to allow children to ‘leave a legacy’, and for parents to
‘let the legacy live’. This piece also includes reflections on working in bilingual contexts, as
well as some ethical considerations of working with children in oncology settings.
Key words: narrative therapy, palliative care, cancer, paediatric health care,
re-membering conversations, double stories, subordinate storyline development,
definitional ceremony, living documents

This paper presents an innovation of practice regarding how
narrative therapy and community practice ideas could be used
in a hospital setting with families who have received the news
that their children will likely die. I wondered how I could work
with the families while listening respectfully and honouring their
sorrow and despair, yet not hearing only the problem story.
Hedtke (2000, 2012, 2014) and White (1989, 2007) taught me
the narrative practice of re-membering conversations and I
saw how they could be helpful before and after the death of a
child. I wondered how, in my role as a psychologist in children’s
palliative care, I could assist families to also find stories of skills,
competencies, beliefs, values, commitments, and abilities in a
manner that would help them find ways to voice their special
knowledges. How could one find a way that their children’s
presences might remain? I have also often wondered if children
would be interested in using narrative collective ideas (for
example, Denborough, 2010; Ncube, 2006) to make legacies.
In this paper, I outline how I answered these questions by using
narrative practices to help the children with their identity life
projects, which would leave a legacy and assist the parents so
as to let that legacy live.
Narrative practices to generate and
share knowledges so children could
‘Leave a legacy’
‘Never in their wildest dreams could a parent think they
would have a child diagnosed with a life-threatening
condition. Then, when it happens, it seems like their
greatest nightmare. But when that nightmare turns into
knowing a child will die, the reality of this wild dream
seems like a living hell. Yet these parents must live
on, and the children too, for some time. While working
with these families, my aim is to have conversations
that can be healing. I often wondered how to have
such conversations and not end up only with stories of
suffering. I asked myself, ‘How can I respect their very
difficult story, and yet find stories of mastery and coping?
How could we together find ways that achievements,
knowledges, and resources can be voiced?’
I wrote these words in Little steps (Petits pas in French), the
book developed with Marie-Claude Proulx, nurse specialist for
palliative care, and nine families in our bereavement community.
In contemporary North American society, experiencing the death
of a child is relatively rare, but the impact of this loss can affect
families for a lifetime (Field & Behrman, 2003) and often has a
greater psychosocial impact on the bereaved than other types
of loss (Hunt & Greef, 2011; Pudrovska, 2009; Rosenberg,
Baker, Syrjala & Wolfe, 2012; Rubin & Malkinson, 2001; Rubin,
Nadav, Malkinson, Koren, Goffer-Schnartz & Michaili, 2009;
Wortman & Boener, 2007). The death of a child is reported as
leading to one of the most devastating and intense forms of
grief (Davies, 2004; Rando, 1986) and has a greater negative
impact on the mortality and psychosocial outcomes of the
bereaved than other types of loss (Li, Laursen, Precht, Olsen
& Mortensen, 2005; Li, Precht, Mortensen & Olsen, 2003;
Pudrovska, 2009; Rosenberg, Baker, Syrjala & Wolfe, 2012;
Rubin et al., 2009).
Narrative practices have been shown to help people
acknowledge problem stories while still being able to become
aware of alternative non-problem stories (White, 2007; White
& Epston, 1990). While these alternative stories are not always
readily available when times are very difficult, the outcome of
narrative practices can be the ‘thickening’ of the alternative
storylines of people’s lives, and having them more deeply rooted
in history. (White, 2005). Furthermore, as Michael White wrote,
‘If psychological pain can be considered to be a testimony to
… purposes, values, beliefs, aspirations, hopes, dreams, moral
visions, and commitments, then the experienced intensity of
this pain can be considered to be a reflection of the degree to
which these intentional states were held precious by persons’
(2005, p. 19). White (2001) also stated that life is an identity
project and that identity is a public and social achievement,
not an individual achievement. The ‘Leaving a legacy’ work
documented in this paper follows the practice of searching for
double stories, and regarding pain as testimony to what people
hold precious, in a broadened social context of meaning-making
and identity formation.
The work of searching for double stories honours the struggles
families face after medical treatments have failed, while also
trying respectfully to discover and voice alternate stories of their
skills, abilities, and special knowledges, and rich stories about
the identity of the child who is dying (White, 2004, 2006). The
problem story is everywhere in the hospital setting because
the knowledge that a child is dying is known by parents and
all professionals working with them (although it is sometimes
not stated to the child). Hedtke (2014) stated that narrative
approaches help the psychosocial team in cancer services
engender hope, and my experience has shown the same for
families of dying children. One great challenge in this work is
handling the experience of devastation felt after hearing that
treatments have not worked. Understandably, families can find
it difficult to think that there is any other account than the very
negative story in this situation. There is a delicacy of timing,
because if one talks too soon about the idea of leaving a legacy,
then people could feel that their story of difficulty is not being
heard. Sometimes the word ‘legacy’ is never used. The work is
called a ‘project which lets others learn about us’, or ‘messages
for family and friends’, or ‘a way of helping others who might
have similar experiences’. This is part of the ethics of this work,
which I deal with later in this paper.

Spreading the news
Many narrative practices are used in this work, including
re-authoring and re-membering (White, 2007). However, since
I believe that identity is a public and social achievement, what
I have called spreading the news or sharing courage
is also a major part of the ‘Leaving a legacy’ program that
I co-developed with the children and their families. That is,
identity, based on narrative ideas and using special
knowledges, is strengthened by sharing (Denborough, 2006,
2010; Lunn, 2008). Definitional ceremonies play a large part
in this (Moore, Talwar & Moxley-Haegert, 2015). White stated
that ‘definitional ceremonies provide a context for rich story
development’ which can ‘re-grade people’s lives in contrast to
many rituals of contemporary culture that judge and degrade
people’s lives. Definitional ceremonies provide people with the
option of telling or performing the stories of their lives before an
audience of carefully chosen outsider-witnesses’ who ‘respond
to these stories with retellings that are shaped by a specific
tradition of acknowledgment’ (White, 2007, p. 165).
In this ‘Leaving a legacy’ work, we celebrated new knowledges,
relationships that are precious, and the special hopes
and dreams we have and can share with others. We held
ceremonies accompanied by recitations, special songs, art
shows, and music. We created an audience. We gave out
individual certificates. The children put these on Facebook,
sent DVDs to friends and family, and put films and art work on
display. In this way, children became even more connected with
their skills, hopes, and dreams. Sharing the legacies enable
them to feel the value of what they had and found precious.
Meaning-making
Narrative assumptions are related to meaning and meaning-
making frames in building identity. In a workshop in Montreal,
Quebec, in 2007, Michael White stated that we are very
selective in what we take in as meaningful. Narrative therapists
are able to help people live less in the problem story because
of a belief that life is multi-storied. Therefore, the reaction to
the potential death of a child depends on past experiences
and the meaning-making frames given to this life experience
– and even very young children have the potential to develop
meaning-making frames.
Bluebond-Langner’s (1978) observations support White’s
ideas regarding young children’s ability to develop meaning-
making frames and are helpful in my work. Her research
suggested that, whether named or not, a child always knows
when they have a terminal illness. Bluebond-Langner’s
proposed that either we maintain ‘open awareness’ for those
who can talk openly about death, or ‘mutual pretense’ during
the moments when people have difficulty, or when parents have
not given permission to talk of death with the child. I find in both
situations that we know that we are talking of death: in ‘open
awareness’, the subject is explicit, and in ‘mutual pretence’, it
is implicit. In both contexts, I seek to respectfully use narrative
practices and follow the lead of the family and child. Boyd
Webb (2009) states that people want their life to have made a
difference. She suggests that the legacy of children is measured
by their relationships and impact on others. So finding ways to
show this impact can help children feel that they have a legacy
to leave.
Subordinate storylines and legacies
Listening for subordinate stories helps in leaving a legacy.
Even when a child is terminally ill and has stories of pain and
hardship, I also hear stories of the celebration of life, such as
• life as an adventure
• stories of appreciating loved ones
• stories of courage
• stories of living for each moment
• stories that make art and music, and
• stories written, filmed, drawn, and painted.
White (2007, pp. 165–218) used re-telling in his work with
outsider witnesses and reflecting teams, with written narratives,
and other written documents. The telling and re-telling of these
stories are what make legacies (Myerhoff, 1982, 1986). In the
‘Leaving a legacy’ program, we take every opportunity possible
to organise a re-telling of what is heard from the children (about
their skills, hopes, and dreams for life). In the re-telling, children,
family, or team members listen and respond back under careful
guidance (Moore, Talwar & Moxley-Haegert, 2015).
Since I was told of prognoses but never did know which child
will die, I worked very hard to create a bond with all families.
Sometimes, deaths are not expected, so we made legacies
all the time. The COURAGE (Cancer as an Opportunity to
Unite and share Resources in an Amicable Group setting
that provides Encouragement) community that I developed
in oncology was constantly providing possibilities for legacy
(Moxley-Haegert, 2012). This community was created after
families asked for a support group. The group later became a
program with a yearly plan and, finally, a complete community
including many of the oncology team members and most
families. Courage is the same word in English and in French,
which is necessary in our bilingual hospital. The need for

bilingualism is a challenge, but it also provided a wonderful
creative possibility in the work. We tried to name all our projects
and have them make sense in both languages.1
Children’s responses to hardship
White (2006) suggested that it is not adequate just to explore
problems without exploring how children respond to the
problems; children always respond to troubles. Establishing
stories of mastery and coping can be like creating islands
of safety or a different territory of identity (Yuen, 2007). This
helps the child to stand in a different space in relationship to
the problem, and we can look at the problem story without re-
traumatising the child in our effort to help.
Community-based narrative practices also create islands of
safety. I hear how children pray and play, and talk to team
members, friends, and family. They present so many ideas
about overcoming the storms of life, and I have created several
different collective documents with them and the parents to
share with others. We collected them in a book placed on the
ward and clinic; this is called a living document because it
always grows and changes (Moxley-Haegert, 2012; idea from
Newman, 2008).
The COURAGE program and
collective practice
In our COURAGE community yearly program, we had ten ‘Tree
of Life’ family group workshops (Ncube, 2006); monthly ‘Journey
of a Lifetime’ groups (based on McPhie & Chaffey, 1998), one
for children and one for the parents; and weekly COURAGE
‘questions of hope’. I then introduced definitional ceremonies
with outsider-witnesses (Moore, Talwar & Moxley-Haegert,
2015). Throughout the program, capturing children’s words,
forming these into documents, and providing for means of
expression, was crucial. With narrative practices, it is possible
for any child to create in such a way that words become written
narratives, or documents, or poems. Poems can then become
songs to be recorded; metaphors become works of art, stories
become slideshows, ‘hero books’, DVDs, films; and all of
these become legacies. For example, we filmed stories that
children wanted their family to remember. We had one special
bilingual film that an adolescent and his mother created to help
other families in palliative care. Several of the children worked
together to make another bilingual film in which the children
try to give others courage. Along the way, we used narrative
questions to lead the discussion and plan the films.
More on bilingualism
The COURAGE day program included bilingual questions
to find special knowledges, abilities, values, and beliefs. We
worked for community, compassion, co-operation, and hope.
Some example questions are:
• What will help you live better with change?
• What are your strengths?
• What are your special abilities?
• How do we help others?
• How do others help us?
• What helps you during difficult times?
Children’s and parents’ responses to these questions show
such wisdom! Responses were translated so their bilingual
wisdoms could be sent each week to all members of our
‘virtual group’ (each of the 200 families who give their email
address so that wisdoms can be shared). The ethics of
language are considered, so that a Francophone examined the
French translations before they were sent out, since I am an
Anglophone (first language English speaker).
Ideas for living
When a child is told that medical treatments failed, it may be
necessary to participate in a lot of work, which will not just
involve preparing for death, but preparing for life (Albom, 1997;
Eaton Heegard, 2003). The use of narrative ideas can make this
‘a daring adventure rather than no life at all’ (Keller, 1957).
Angy, who told me she did not want to talk about dying, had
lots of ideas for living. Even as she was dying, she told me of
helping a friend who felt suicidal, saying; ‘How can you think of
taking your life when I am fighting to keep my own?’ Before her
diagnosis, Angy had planned to be an interior designer. After
her diagnosis, she decorated her bedroom and she willed it to
her sister. I told her that I often write a letter to families about
my experiences with a child and family, and wondered if she
might like to co-write one with me. She agreed, and in our letter,
she wanted her family to know that cancer had taught her many
things, that she lived every moment to the fullest, that she was
not afraid, and that she was strong.
Megan tried to survive her third cancer but had to stop
chemotherapy. She did not talk of dying, but when we did a
family Tree of Life exercise in her home (Ncube, 2006), she
could not suggest anything to put in her branches (hopes,

dreams, and aspirations). She asked me once if it was harmful
not to talk about what was happening. I asked her whether she
thought it was helpful or harmful, and she said that for her it was
better to just enjoy life. Megan had left many legacies. She had
years of responses to COURAGE questions of hope and was
an artist as well (see Figure 1). Her voice can be heard reading
the collective children’s document in my Dulwich Centre Friday
afternoons presentation (Moxley-Haegert, 2012).
Raphael’s story and poem
Raphael had such special knowledges and a special story to
tell. The team and his parents knew that he was dying from
his brain tumour, but his parents were not in agreement about
talking openly with him about his death at that moment. He
told me of a dream that he had in which he was dying in a fire
and his mother wouldn’t save him. We had a de-constructing
conversation about this dream and decided that if it should
happen that he was in such a situation and his mother didn’t
save him, it was that his mother couldn’t save him (this
discussion could be taken at both ‘face value’, but also seen as
a metaphor, and therefore an example of Bluebond-Wagner’s
‘mutual pretense’). Later, he and his family went to Florida to
see Disneyworld for his special wish. He managed one day
at Disneyworld before he became so sick that they called
emergency services. When the emergency responders, who
were firefighters, arrived, Raphael, using his dream of a fire
perhaps, said to his mother, ‘I am dying, maman (mother), and
you can’t save me’. His mother told me that she was so happy
that we had had the dream conversation, so they could speak
about death that last night (with ‘open awareness’). Raphael
loved music (see Figure 2), and wrote a poem that he recorded
to music played by the music therapist, Pascal Comeau.
His poem demonstrates such wisdom (translated):
Growing the love story
I am nothing but love.
To love is not a quality,
but it is so wonderful to experience.
Everyone can feel love gently each in his turn.
It is one of the only sentiments that is free and that
we can experience day and night.
It enters our hearts without warning.
It takes on life and goes on forever.
You need never doubt love
because I will love Forever.
Figure 1: An example of special words from one of our
COURAGE questions of hope.
Figure 2. Raphael with Christelle (music therapist): ‘The simple
pleasures of every day. Lasting memories. Music is my passion.’

My name is Laurence
Laurence adapted a poem written by her mother, and music
therapist, Christelle Jacquet, helped her with the music.
Laurence sang it and played the guitar, and made a beautiful
slide story to go along with it. Her mother has given me
permission to use her work in teaching about ‘Leaving a legacy’.
I have translated this lovely and moving song from French.
Laurence had cancer three times, and could not survive
the third.
Laurence’s song
It is many years since I have known,
that science has failed and the cancer has grown.
There are some of you, who have come to see,
what will happen, what will be?
Refrain:
Oh the suffering, when I think,
and you know, at what price,
and how important it is,
THAT I AM ALIVE!
And I imagine that there might be a day,
when I can live the same way as I lived before,
for every moment I live, I say to myself,
I have a chance. Oh yes, but how?
[Refrain]
For every moment I live, I would live another.
My name is Laurence. I am determined.
My strength, my energy, the serenity – diminished.
I think every morning I wake,
how important it is to remember,
for every moment I live, this is not the end.
[Refrain]
I take my path. I get up each morning,
I continue to live without thinking, without forewarning.
I continue to live my life the most beautiful possible.
My next years will be or not. Whatever!
[Refrain]
Nothing will stop me. I am Laurence.
I am determined to live my life in the best way possible.
In the years to come,
JUST WATCH ME DANCE. I LOVE YOU ALL.
Charles-Eric’s film
Charles-Eric was told that his chemotherapy treatment didn’t
work. He agreed to film his story with his mother so others
could hear his special knowledges. Charles-Eric had challenges
all his life with multiple operations and did not speak often of
his experiences. I felt privileged that he agreed to make this
film. I had organised with him what questions would be asked.
Charles-Eric said, ‘I am happy that I did all I could to live as
long as possible. I can now have a better life for the moment, at
home with my brother and sisters, instead of sick in a hospital
bed. My mom is taking this harder than I am. I have always
been sick; this is no different. I know it means I will die soon,
but I will live better for now.’
Parents’ knowledges:
‘Letting the legacy live’
‘Our pain is forever present, but so are our children.’
– Anthy Tsatoumas2
I wish to credit Pierluc and his mother for co-creating with me
the idea of ‘Letting the legacy live’. I met Pierluc five months
before he died. He loved dolphins. Pierluc was seven years old
and his mother felt unsure about discussing death with him.
However, she found a dolphin book about death and dying
which she read to Pierluc during his last night of life, and she
felt he was at peace. However, she was not at peace. I had
worked with Pierluc for some time and, a while after his death,
I dreamt of him. He told me to call his mother. The next morning,
I called his mother and yes, she was having a very hard time.
She was an extremely social person who had been one of the
parents who asked for the COURAGE oncology program parent
groups. She lost her community of support when Pierluc died.
I decided to form a bereavement support group and the project
of ‘Letting the legacy live’ was developed.
Questions to say hello again
Michael White used the metaphor of life as a ‘club’ which has
members (White, 2005). When someone dies, the membership
is not cancelled, and re-membering conversations can keep
membership alive and helps us re-story grief (Myerhoff, 1982;
White, 1989, 1997). Through her writings and in personal
conversations, Lorraine Hedtke has helped me use re-
membering conversations in bereavement counselling (see
Hedtke 2000, 2012 2014). In some written narrative letters
I send to parents after a child has died, I add questions adapted

from Lorraine Hedtke’s work. These questions are included so
parents might be able to say ‘Hullo’ again (White, 1989). The
following questions use ‘her’ as the pronoun, but this is changed
if the child is male.
Contribution and appreciation
• What things about knowing her make you realise what is
important to you?
• What contributions did she make to your life?
• What have you appreciated in your relationship with her?
• What did she say that was important to you?
• What did she teach you?
Identity
• If you could feel her presence now, how would it
show itself?
• What possibilities would feeling her presence bring
to your life?
• What might you say to her?
• What memory is most significant?
Re-membering
• If she could hear your responses to these questions now,
what would she say to you?
Conventional western practices some
parents found unhelpful
Certain assumptions of grief psychology have been
questioned recently. These include disengaging from
relationship with the person who has died; accepting the
‘reality’ of death and death as a finality of your relationship;
promoting deathbed conversations to say goodbye; completing
‘unfinished business’ and planning to ‘move on’ (such as in
Kubler-Ross, 1969). I have had parents tell me that they found
such ideas unhelpful and, in some cases, harmful. Narrative
approaches encourage re-engagement, keeping the loved
one close, keeping stories alive, bringing the best of the past
into the future, (Raphael’s song) and inviting other stories
besides grief and a tragic version of death (White, 1989).
Research about what parents want in
bereavement care
Stevenson (2014) wrote in her doctoral thesis that parents of
children with life-limiting and life-threatening illnesses often
want support from the paediatric hospital, both during their
child’s illness and following the child’s death (see also Contro,
Larson, Scofield, Sourkes Cohen, 2002; D’Agostino, Berlin-
Romalis, Jovcevska Barrera, 2008; Decinque, Monterosso,
Dadd, Sidhu, Macpherson Aoun, 2006). The importance of
providing quality paediatric palliative care (PPC) has also been
emphasised in a Canadian study that surveyed practitioners’
views on research priorities (Steele, Bosma, Johnston,
Cadell, Davies, Siden Straatman, 2008). These reports
and others highlight that care for children with life-threatening
and life-limiting illnesses must take into account and respect
their physical and psychological situations as well as the
psychological wellbeing of their families (Field Behrman,
2003; Nelson, Botkin, Kodish, Levetown, Truman Wilfond,
2000). Bereavement care is not only considered an important
component of PPC, but it is also considered a crucial
component of a continuum of care for parents of all children
who die, no matter what the cause of death (Groupe de
travail sur les norms en matière de soins palliatifs
pédiatriques, 2006).
The Little steps project
Pierluc and his mother helped me to think of collective ways of
practice. Prior to this, my bereavement work had not been using
ideas of community. This was in part because other parents had
told me of grief support groups that they felt were harmful. I did
not want to replicate this harm. I invited Pierluc’s mother and
several other parents to participate in a project that aimed at
determining knowledges and understandings after the death of
a child and letting the legacy of their children live. This project
has turned into a book named Little steps (Petits pas)2.
I initiated the Little steps project and put it into action with the
help of Marie-Claude Proulx, a nurse specialist in the palliative
care team. I wanted to unite parents living the death of a child
with the aim of sharing their experiences and creating tools to
help other parents. The Little steps project follows the narrative
practice of searching for double stories, which in this case
acknowledges not only the struggles faced after a death of
a child, but also the skills, abilities, and special knowledges
that can be discovered (White, 2007, pp. 219–261). My hope
with the Little steps project was that identity knowledges could
become social and public.

In the prologue in Little steps, I wrote: ‘Identity can get
confusing when there is a loss of a child. Am I still a mother
when my only child has died? Am I still a parent of two children
when only one of my children still lives? Identity is built through
stories. We contain multiple identity stories. Many people
contribute to one’s identity. Through re-membering, we can
incorporate stories of a child who has died into our identity.’ To
help with this identity project created through the Little Steps
book, we planned a telling of the parents’ stories in written and
artistic form. These stories of survival show how parents are in
the process of managing their lives after the death of a child.
Re-telling stories of survival can ‘thicken’ the stories, making a
re-grading of earlier conclusions about identity of life which can
be weakened by the loss of a child.
Each chapter of Little steps contains different elements: text,
scrapbooking, drawings, lists, thoughts, poems, witnessing,
and so on. We wanted the project to be flexible and thus
permit parents to express themselves and share with other
parents in any manner they wished. I include a picture of the
introduction to demonstrate their work (see Figure 3). Individual
stories are in French for the Francophones and English for the
Anglophones.
Figure 3: Introduction to Little steps.

Below are the English explanations of each chapter by Anthy
Tsatoumas2.
Chapter 1. Portraits
This chapter allows you to get to know us, the parents, and our
children. You will read about our journeys and learn about our
struggles. We share our stories with you.
Chapter 2. The how-tos
Hope is what helped us to find our way through the stormy
times of our grief. Our grief surrounded us with many struggles
before and after the death of our child. We hoped for less pain
and more happiness to come our way. We did not know how to
find that happiness. Here we tell you how we found our way out
of the storm and began to live again, albeit in a different light.
Chapter 3. Pastimes
The grief a parent faces when a child is sick or when a child
dies is all-consuming. It disables you and everyday life becomes
difficult and overwhelming. An escape from the emotions,
anxieties, and pain faced each day was a necessity. The ways
we chose to escape from our daily turmoil are shared in this
chapter. These moments of escape were priceless for our
wellbeing. Some of these activities still play a prominent part
in our lives.
Chapter 4. Creations
Creativity seemed to be an activity many of us chose as a
means of escape. Many creative avenues were chosen.
Scrapbooking, card making, crafting, drawing, writing, reading,
music, and poetry are a few examples. Why did so many of us
reach out to our artistic side? I once read that ‘art requires the
ability to surrender to the unanticipated possibilities of the work
as it unfolds’. Our hope for a brighter tomorrow provided us
with the ability and willingness to surrender to our ‘art’. In doing
so, creativity provided us with a great peace and a means to
release our pain. It was a therapeutic escape.
Chapter 5. Words and writings
Understanding a parent’s grief is very difficult if you have not
travelled the same road. However, acknowledgement of the
grief a parent is enduring is priceless. Kind words, simple
acts, listening, and a hug are all simple gestures that provide
enormous comfort to a grieving parent. Comfort can also be
found in books, poems, support groups, or music. This chapter
lets you know some of these that brought us comfort.
Chapter 6. Family and those around us
The illness and death of a child does not only affect the parents.
They say ‘it takes a village to raise a child’. That same village
is there when a child is ill and the parents are left with empty
arms. The people in this village help us to live day to day, they
support and comfort us, and they grieve with us. Brothers,
sisters, parents, aunts and uncles, friends and colleagues also
suffer the loss of this child. How they helped us and how they
grieved for the loss of our child is found here.
Chapter 7. What we did not find helpful
The death of a child is difficult. No-one wants to think of such
tragedy. Many people are not comfortable talking to a grieving
parent and often speak and act inappropriately. Their words and
actions are hurtful, although with good intentions, and do not
help us. This chapter shares some of the words and actions that
have not been helpful to us.
Chapter 8. Rituals, symbols and souvenirs
‘Our pain is forever present, but so are our children.’
I invite you to think about what it might mean to children and
families who have suffered this trauma to know that their
legacies are shared with you. What would it mean to them to
acknowledge that they can leave a legacy rather than a loss?
What would it mean to the parents and siblings to know that
they are ‘Letting the legacies live’? What new ideas for legacy
do you have?
External research to support the use of
narrative practices in child palliative care
Many of Stevenson’s (2014) research findings support the idea
of using narrative practices in bereavement counselling. Her
study included 5 of 21 families who had participated in narrative
practices with me. Stevenson stated that ‘it was clear that the
death of their child changed their lives in fundamental ways,
to the degree that the parents narrated their lives as occurring
before and after the turning point of their child’s death’ and
they ‘reorganised self-identity’ (2014, p. 129). However, she
also stated that parents regulated their intense feelings of grief
by finding ‘meaning through making sense of the loss, finding
benefits or positive aspects from the experience’ (p. 129).
Meaning-making is a concept currently explored in the
bereavement literature, a term for describing processes that
contribute to adaptation to bereavement (Park, 2010), also used
in narrative therapy. In Stevenson’s (2014) analysis, aspects
related to meaning emerged in parents’ descriptions of how
they coped. Her findings support other studies of bereaved
parents (Alam, Barrera, D’Agostino, Nicholas Schneiderman,
2012; Barrera, D’Agostino, Schneiderman, Tallett, Spencer
Jovcevska, 2007; Wheeler, 2001). According to Stevenson, a
key aspect of the parents’ individual experience of grief related

to ‘maintaining a bond with their child who was no longer
physically present in the world … They often spoke about their
continuing connection to their deceased child and their attempt
to maintain the child’s memory’, and ‘Parents also mentioned
how it was important to continue the memory of their child, that
their child not be forgotten’ (p. 130). Bereavement follow-up
and support services were considered helpful because they
‘assisted parents with these various aspects of coping, such as
helping parents maintain a connection to their deceased child’
(p. 139).
‘One finding was that parents often reported helping others
as a way of coping’ (Stevenson, 2014, p. 130). My practice of
‘Letting the legacy live’ used ideas of parents helping others,
and encouraging community. Quoted in Stevenson’s research
is one parent’s comment: ‘We made a special booklet … that
really helped me a lot to live with the grief … that I had … it was
an extraordinary therapy’ (p. 131). This research encourages
me to think that narrative practices could be particularly useful
with families who have had a child die.
Appraising the ethics of this practice
There is a need for delicacy in this work. Sometimes parents do
not want the child to know the medical prognosis. The concepts
of ‘open awareness’ and ‘mutual pretense’ were discussed
previously (Bluebond-Langner, 1978). When the parents and
child are able to discuss the likelihood of death, then I openly
discuss this with them. There is then more possibility to plan
the legacy they want to leave. For example, Angy and I could
co-contribute to a written narrative for her family. When a family
does not want to discuss death openly, it is possible for the
legacy to not be stated clearly as such, but it is still possible
to create a project to show others’ knowledges about who the
family are and their values, beliefs, and special knowledges.
I also try to help people understand the children’s high
awareness and ability to understand prognosis (Bluebond-
Langner, 1978). However, there are sometimes concerns
about talking openly of death to children generally; there are
also concerns about talking openly of death specifically to
children who are dying; and there are particular concerns about
talking openly about death to children who are dying who do
not know their prognosis. I respond to these triple concerns
by explaining to families about the ethics of narrative practice,
which is to follow the lead of the child and/or families. In this
context, this project has involved many different strands and
activities, such as Tree of Life workshops and Journey groups,
so that families could choose which ones they wanted to be
involved in, and how explicitly they wanted to discuss topics
of death within these.
As narrative therapists, we engage in practices of accountability
and transparency: the openness of our work to parents and
children, and the constant questioning of this work, is more
likely to provide them with what they want to receive. My
experience with narrative practitioners is that we lead with
questions, and we ask often if the questions are the ones
the people consulting us want to respond to. We watch for
discomfort, and pull back when the person consulting us seems
uncomfortable. I have learned from children and parents that
they appreciate when I follow their lead. The child can go back
and forth from ‘open awareness’ to ‘mutual pretense’ over the
time of our work together, as can family members. The practices
of accountability I put in place in relation to this dilemma involve
continually asking, ‘Am I asking the questions that you want
me to ask?’
Conclusion
In summary, with the children, I used narrative and community
practices to create songs, poems, films, art, letters and music
which recorded values, beliefs, and knowledges, often as
archives to be sent to friends and relatives. I named this
Leaving a legacy. I did this using narrative therapy practiced
with families, such as Tree of Life workshops and Journey
workshops; questions of hope with wisdoms to be shared with
our virtual group; and individual narrative therapy projects.
I used re-membering conversations to help the parents keep
the child close to their hearts. Collective community work
included archiving stories in a living document called Little
steps, and developing community by pairing parents who had
insider-knowledges with newly-bereaved parents and sharing
with them letters of stories and support. I named this Letting
the legacy live.
I have shared pictures, stories, documents and names
within this paper under the full permission of the families and
individuals involved. The families and I have worked out how
to share these ideas of resources and special knowledges.
This work could not have been done without a community.
I wish to honour all the many families and wonderful children
I have worked with who have been able to share their very
difficult stories of loss, pain, and fears, while also finding their
own hopes and dreams, values and beliefs, and the special
knowledges which they held precious. I want also to thank the
wonderful oncology and palliative care team members who
assisted in this work. I wish, in particular, to credit Angy for the
co-creation of the Leaving a legacy idea. When I visited Angy
after she was told the treatments weren’t working for her cancer,
she said, ‘I don’t want to talk about dying’. I responded, ‘Well
then, would you like to talk about living and how you plan to live
the rest of your life?’ She, thus, gave me the idea of Leaving
a legacy.

Notes
1
Recently, I carefully considered polanco’s (2011, 2013) ideas
in terms of considering ‘foreignising’ narrative therapy for the
Francophones (French first language speakers) even if they are
European/American. polanco Epston (2009) proposed that
studies of translation and bilingualism offer interesting contributions
to the development of narrative therapy. They state that, as
narrative ideas migrate cultures, these crossings can enrich and
diversify narrative practices. I considered this view in the past
and their statement certainly has correlated with my experiences
(Moxley-Haegert, 2009).
2
To view this Little Steps publication see:
www.hopitalpourenfants.com/patients-et-familles/information-pour-
les-parents/petits-pas (French) and www.thechildren.com/patients-
families/information-parents/little-steps (English)
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