From diagnosis until the end: How to cope with a child with a life limiting condition
Dr Belen Tarrat
Menudos Corazones Foundation
Grief is a psychologist process produced after a significant loss, that can be the loss of someone loved, or an animal, a thing, a relationship, an employ, or a physical capacity, to mention some examples. It is considered a highly emotional experience that is human, universal, unique and very painful. During this process the feelings are barely contained and some of the most frequent feelings are the sadness, the fear, the guilt, the lack of motivation, the isolation and the loneliness, and usually are experienced during the six to twelve months after the loss, time in which our emotional attention, the contention and the therapeutic support are crucial to generate an acceptation that goes into the wellness canons. If the affected person doesn’t count on with this kind of support, these feelings can turn out into pathological and highly risky ones.
The families affected by a neuro-degenerative disease as Tay-Sachs or Sandhoff, are constantly face to face with loss, because since the moment of the diagnosis, or even before, their child is loosing its acquired capacities during its short life, so each one of this losses is in itself a separate mourning process.