Unveiling a fragile spirituality: Experiences of connectedness in pediatric palliative care

114 Chapter 6
to life experiences which are interpreted as extraordinary, independent of affiliation to
spirituality or the divine or God.
The context in which people may experience extraordinary events is often that of
an existentially disrupting period that shatters expectations of life as a meaningful,
righteous, personally rewarding expedition (Janoff -Bulman, 1992). We recognize the
vision of the German theologian Henning Luther, who described how the experience
of transitions, passages or impediments in life opens up to another dimension in life.
That which disturbs, brings out of balance and reflects the ambiguities in daily life,
evokes more transcending motifs than does the normal, orderly, inert flow of life (Luther,
1992). Especially boundary experiences of finitude and existential fragility can disclose a
spiritual dimension, that offers new perspectives which may include an encounter with
something unexpected or unimagined. The notion of transcendence refers to a crossing
of borders, surpassing the familiar and explicable. It creates the possibility of something
within the phenomenal world that points beyond it. This transcending motion is what
we come across in the lived spirituality we address and define as ‘fragile’, because it is
easily contested by rationality, and often without a religious frame of reference.
The characteristics of this fragile spirituality came explicitly to the fore in our research in
the field of pediatric palliative care (Falkenburg, van Dijk, Tibboel, & Ganzevoort, 2019).
This concerned the stories of bereaved parents of all backgrounds, who experienced
special moments of connectedness, with their deceased child, with God or with life
itself. In this current reflection on our findings, we further describe expressions and
characteristics of this fragile spirituality against the background of a lack of an embedding
worldview. We reflect on theological interpretations of these transcending life
experiences, also with regard to lasting connectedness to the dead.
CHARACTERIZING FRAGILE SPIRITUALITY
Transcending experiences in the context of grief and loss
To explain how the transcending motion can be expressed, we take the example of
parents who are explicitly confronted with a definite breach in their lives, namely the
death of a son or daughter. Such a loss creates a total disruption of the expected life
line (Talbot, 2002). After the child is gone, the parents are expected to continue living
without him or her. At the same time, however, grieving parents may feel that the bond
with the child is not fully severed but finds expression in experiences of connectedness
(Klass, Silverman, & Nickman, 1996). Experiences of connectedness have been observed
in more studies exploring continuous bonds after death, in which they are labelled as