Working Toward a New “Normal”
While loss is pivotal in a person's experience, it is not the loss of a child that these families are experiencing. Rather, it is the “loss” of the way in which their child experienced the world.
It is the loss of what was “normal” and the comfort of what used to be.After her child was injured and began to use a wheelchair, a parent spoke about missing walking with her child through the leaves in the autumn. The mother felt sad that she could no longer hear her son's footsteps crunch underfoot, but after a period of adjustment, was able to feel a new kind of happiness watching her son role himself through the leaves. Instead of giving up on a favorite pastime, the family learned that pushing the child in the wheelchair was fulfilling, just different from their previous experience.
Family members and caregivers are subjected to multiple tasks at the time of diagnosis, and one of these tasks is how to reframe their child's experience and create an experience that not only meets the child's needs, but also that of the family. The following are some examples of how families have reframed those initial negative feelings into feelings that are more productive or healthy:
Helplessness →- Empowerment Fear —> Cautious optimism Sadness →- Openness of feelings Anger —> Advocacy