Coping with illness

The fictional family I have created has just received a diagnosis of Alagille syndrome for their infant child.  The family is comprised of a mother, father, daughter and a new infant son.  The stresses associated with Alagille syndrome are immediate, and futuristic as well.  First, the initial stressor lies in prognosis, the wondering of what this new diagnosis means for the child and the caregivers respectively.  Secondly, another stressor might be, what does the daily care for our child now include?  Medications, doctor visits, the presence or absence of new activities, therapies etc.  With this diagnosis beginning in infancy there may be a sense of ambiguous loss as well, especially when not having a complete prognosis because this is a chronic illness with varying degrees, which is to say it's lifelong and care will have to follow accordingly.  New expectations for the child may need to be formed in terms of life expectancy, and capabilities.  The parents will be greatly affected by the diagnosis because they are first and foremost responsible for the care of the infant.  They will be affected physically in terms of doctors appointments, therapies etc, and psychologically in the realm of new dreams and hopes for their child.  The sibling will be affected in that greater care and attention will have to be paid to the child with Alagille syndrome, possibly changing the relationship the healthy sibling had previously had with her parents.  She may experience new stress in gaining attention from her parents, or possibly having to adjust her expectations of the timing of her needs as well.  For the family to adapt it will greatly depend on the perception of the diagnosis.  The diagnosis was given soon after birth so there will be an adjustment period psychologically for the parents.  What will be helpful with the parents and sibling is enduring characteristics.  These characteristics might include the mother being patient, her marriage being stable with high communication skills, and a sense of the family having cohesiveness before the diagnosis.  Balanced coping, as our book mentions, is the ability to keep the demands of the illness in perspective with other family needs (Price 297).  This will be essential for the family to adapt to the new illness diagnosis.  This family will have to be able to balance the doctor appointments, medication schedule, and the needs of their healthy child as well.  The parents will have to attempt to maintain a sense of positivity around the illness and new coping mechanisms such as self care, working with the medical professionals and managing activities and time together with their healthy child.  The outcome, if family life and coping is balanced, is resilience.  The couple may grow closer as they manage their child's illness together, balancing care with daily life activities.  The family as a unit may become more cohesive as they learn to care for the infant together, uniting as one, on the same mission together.  If the family can manage to adapt, adjust expectations, and cope well, they will come out resilient and better than they may have previously started.