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

128 Chapter 7
on experiences of post death presence, found that the sense making of bereaved persons,
was multi-voiced, involving different positions and voices in the self, and including
many incongruences in beliefs and goals (Austad, 2014). This implies that making sense
of loss is by no means self-evident. We noted that some parents – looking for a purpose
- indeed tried to make some sense of the child’s death. Two mothers found support in
the thought that everybody comes to earth for a reason and that once the mission is
completed the soul can return ‘home’. These were exceptional cases, however. Most of
the interviewed parents did not show any inclination to make sense of the death of their
son or daughter. Indeed, the mere thought of it evoked anger. Some religious parents
said that God knew the reason; the death surely made sense in the eyes of God. Some
day they would learn what the reason was. They themselves could not make sense of
their loss; they believed God could.
For the parents in general, however, finding significance in the process of grief proved
much more relevant. In the context of contingent experiences, even unresolved inconsistencies
and discrepancies in thinking did not hamper finding significance in these
experiences. The question was not what the meaning was of the loss but within the
loss (Janoff - Bulman & Frantz, 1997). Essential to parents was the conviction that the
deceased child’s life had immense value and meaning, that extended beyond the reality
of loss.
FRAGILITY IN THE MEDICAL CONTEXT
Interviewing bereaved parents more than five years after the death of their son or
daughter in the PICU, confronted us with suffering that is not always directly discernible
in the PICU. This is an important realization. At first sight, parents may seem to cope
quite calmly with the child’s frightening circumstances. Yet parental narratives reveal
anxiety, feelings of estrangement, a disruption of personal identity and above all loneliness
that is only partly visible to the caregivers in the intensive care. Groundlessness, the
feeling of losing all grip on life, resulting from ‘being shaken to the core’ is a lived reality
in the PICU (Bruce, Schreiber, Petrovskaya, & Boston, 2011)
On the other hand, we also discovered the depth of meaning finding within the stories.
The search for meaning seems indeed to be a natural human reaction to trauma (Frankl,
1978 (1946)). During existentially disrupting experiences, the parents experienced consoling
connections that involved both bodily and spiritual contact with the child, as well
as deep relational contact with caregivers, which actually did provide some ground in
all groundlessness. The fundamental concept of connectedness, which is also the central