Those are two of the key findings of a Cardiff University, UK, research study, published in the latest Journal of Advanced Nursing, which explores parents' reactions in the first year after diagnosis.
The intensity of the emotions expressed by the 38 parents taking part in the study surprised the team of researchers, led by Lesley Lowes from the Department of Child Health, School of Medicine, Cardiff University, UK.
They carried out in-depth interviews with the parents of 20 newly diagnosed children at a large Welsh teaching hospital, ranging from a few days after diagnosis through to 12 months. Half of the parents took part in a series of three interviews and the remainder were interviewed once.
"The intensity of their emotions surprised us and is perhaps not realised by other healthcare professionals working in this field" says Lesley Lowes, who specialises in nursing children with diabetes.
"Before diagnosis, most parents associated their child's symptoms with normal childhood illnesses.
"The unexpectedness and speed of diagnosis left all parents ill prepared to deal with the situation. Their world suddenly changed, leaving them insecure and uncertain about the future.
"Diabetes intruded emotionally and practically upon all of their lives."
Lesley Lowes and her team hope that their paper will help health professionals understand the emotional trauma faced by parents and the support they need to cope with the challenges posed by their child's illness.
"Twelve months after diagnosis, many parents continued to be aware of their loss, which included the loss of a healthy child and loss of control, freedom and spontaneity. They still found some changes caused by the diagnosis irritating and intrusive" she says.
They were also acutely aware of the risk of possible complications in later life and some expected their lives to be affected by the diagnosis for a long time.
However, others felt positive and were relieved that their child was not going to die and that the diagnosis had enabled them to find a rational explanation for their child's symptoms.
"During the first year after diagnosis, parents rebuilt a new model of their world. Normality became a lifestyle adapted to incorporate the needs of a child with diabetes.
"However our findings raise doubts about whether many parents of children with diabetes ever fully accept the diagnosis. Even a year after diagnosis their emotions resurfaced when circumstances reminded them that their children were different from others and that they had a chronic and unpredictable illness."
Parents' comments included:
Journal
Journal of Advanced Nursing