The Perfect Harmony
From the day of our birth, we believe, as if it were something that could be determined by wish or will, that we are the authors of our own history and that our abilities and actions influence our future, and most importantly, that of our children. As soon as a child is born we imagine that he or she will grow up to be handsome and healthy, a strong athlete, a good scholar. Our children will attend university, they will enjoy themselves, and when they become adults, they will meet someone with whom they will form a family and they will grow old watching their own children grow up. This is the circle of life: a perfect harmony.
But it is not always this way.
“We have the test results and they confirm our suspicions. Your child has…”
The diagnosis of a chronic or high risk disease in a child suddenly robs parents of any control they feel they have over his future. Time seems to stop. All of their dreams vanish in an instant. Their child is sick.

Everything is transformed by the diagnosis. Parents feel they no longer have control over their own lives, let alone that of their child. In an instant they have become vulnerable. People whom they have never seen before are making critical decisions about the future of their child. The parents no longer feel capable of protecting their baby, or themselves.
The illness is all-consuming, and, especially in the first days after diagnosis, there do not seem to be enough hours in the day to look after the child, attend to his emotional as well as physical needs, learn about his disease, notify friends and family about the situation, make decisions about work, and restructure family life in order to face the crisis. The harmony has been broken.
From the first moment the disease makes itself known, stress becomes a daily companion. Stress defined, not as a temporary condition of overwork or overexcitement as it is understood colloquially, but rather as a permanent state of tension of extraordinary levels which occurs in response to a specific situation, whether brief or prolonged, and which is usually harmful to the human organism.
When, to the initial shock of the diagnosis we add the possibility of hospitalisation, the difficulties inherent to the treatment of any serious disease, the new limits the disease imposes on the patient and his family (both physically and socially),

Adaptation to the reality of a chronic disease, like the process of adaptation to any prolonged situation of extreme stress, occurs progressively. The help of family and friends and accommodations made in the workplace are just some of the resources available to those who face a situation of long-term illness. In spite of the external supports, however, the stress associated with a chronic malady is such that people who live with it must develop internal strategies for dealing with the challenges that the disease entails.

Regarding this last point, literature on the subject distinguishes between different kinds of coping strategies: those based on the problem itself, aimed at taking action to face difficulties in an objective manner; those based on the sentiments, directed towards managing the inevitable emotional reactions; and positive assessment, which is aimed at recognising the constructive lessons to be learned from even the most difficult personal experiences.

Given the importance of coping strategies in parents’ ability to adjust to the fact of their child’s illness and, in particular, the efficacy of problem-based techniques, let us examine how they may be applied to the adaptation to chronic disease in general, and in the management of the emotions it triggers.

The news that they receive creates a kind of emotional overload which in turn causes the immune system to form a protective layer that filters out all but the most essential data. Confusion and paralysis are the human organism’s natural response to catastrophe and serve to protect the mind and body from the consequences of over-stimulation by outside factors.
Giving voice to doubts when necessary, writing down the doctors’ instructions, or asking a friend or family member to help keep pace with the barrage of new and complex information regarding the health of the child, are a few ways to deal with the inevitable state of confusion in which parents find themselves.
Denial, along with fear and feelings of hopelessness, are sentiments which arise with astonishing force and distressing frequency. In the first days after diagnosis, many parents find themselves in a state of denial over the situation they face. They simply cannot believe that their child has a life-threatening condition. They convince themselves that there has been an error and often seek out second and third opinions. This process of denial is a kind of defence mechanism that allows the parents to make it through these first terrible days in spite of their fear and desperation.
Nevertheless, little by little parents begin to listen to the favourable statistics that doctors offer them. They regain some control over their emotions and gradually start to accept the new situation, so that once again they are able to help and support their child, as well as effect the necessary adjustments and arrangements that make his treatment possible.


The types of action that are suggested for anger management include improving communication with doctors and nurses, discussing one’s feelings with specialised professionals, speaking with the parents of other sick children, taking physical exercise, practising yoga or other relaxation techniques, listening to music, talking with friends, joining support groups, and dedicating a day to oneself each week or month.
The eternal confrontation between hope and despair accompanies parents throughout the course of the illness. Parents experience an acute sense of loss when their child is diagnosed. They do not feel prepared to face the possible deterioration of the child’s condition, or worse, the child’s death. They see only the loss of hopes and dreams for their child and for themselves as parents, and they fear, quite simply, that they will not be capable of dealing with the enormous problems facing their family. In general, they feel overwhelmed by sadness, and even when the prognosis is good, theirs is but a relative sense of relief.

In order to make this emotional adjustment, it is important to have good handle on the situation, but the question of perspective is fundamental. As much attention should be devoted to understanding the child’s current condition and to the technical and medical advances which may be used to treat it, as to maintaining a realistic focus on what the child is able to do based on his present circumstances; because hope in these cases is defined as well-being in the present and the wish for a better day tomorrow.
In a way, all of the concrete actions discussed have a common theme and the same basic mission: to understand the disease and integrate it into the family’s daily life in order not to be crushed by it.


English translation by Emiliabianca Pisani