Below is the outline for a course I teach on Parenting Children with Life Threatening Illness. I offer an adaptation of this course as a 90 minute parent education talk.

When a Child has a Life Threatening Illness

The Shock of Diagnosis

Parents can become depressed.
Parents can be thrust into grief.
Parents can become psychically numbed – in the service of delayed grief.
Parents could cope through all of this.
Parents may not cope well through all of this.

Treatment

Coping with toxicity of treatment – parents are torn between fighting the illness and wanting to protect their child from unnecessary suffering.
Facing the unthinkable, thinking through the unknowable.
Living with ambiguity.
Falling off the developmental train: out of step with other children and parents; feeling isolated; protecting your child’s self-esteem at the cost of connection to other adults.

Post-treatment

Cure

For the child who is cured post-treatment, there will be a period of time in which the parents view the child as fragile beyond the fragility of healing. They may be afraid of relapse, or simply shaken by the experience of the diagnosis and treatment.
Over time, if there is no relapse, and good recovery, parents can regain confidence in the child’s robust health. But sewn into the parents’ psychology is the trauma of the event. Subsequent childhood issues may be felt more strongly that if these parents hadn’t had the experience of diagnosis.

Examples: some heart problems; pre-maturity, without complications; accidents; etc.

Chronicity

Commensurate with the level of debilitation, the parents have to adjust to this new and unexpected version of childhood for their child, and this unexpected version of parenthood for themselves.
There are losses to be grieved: loss of the healthy child; loss of the innocence of new parenthood; loss of the community of parents of healthy children; etc.
Foreshortened future.
Financial stress.
Incursions into freedom as medical appointments take time and impact upon scheduling, from daily schedules to vacations.
Constant evaluating whether childhood troubles are “normal” or sequelae, the result of illness; constant evaluating whether a childhood problem is transient, developmental, or more sinister.
Adjusting to the new, unfamiliar future for the adult one’s child will become and how to prepare for independence, or relative independence or for adult dependence.
Coping with the situation in which a child will certainly succumb to an illness.

Ambiguity

Protecting the child’s integrity and sense of self as healthy while also attending to one’s own sadness as a result of the ambiguous health status.
Learning to live with uncertainty.
Coping with parental isolation as one’s community cannot possibly reflect accurately one’s experience.
Some parents find it difficult to attach to a child whose future is uncertain.
Some parents struggle with being over-protective of a child whose future is uncertain.
Some parents periodically feel a crisis of faith, having to then re-group in order to move forward with the same fervor and commitment.
Living with ambiguity is tiring; it should be expected that parents will fall apart from time to time, even as their child thrives (Reasons: getting tired; passing conscious or unconscious landmarks, e.g. the child’s approaching an age the parent never thought they would get to).

Patricia Contaxis

When a Child Has a Life Threatening Illness