Before any of that can take place, however, the important figures in their lives – parents or guardians, caregivers and even teachers – must care for their own physical and mental health first in order to have the depth of patience, compassion, forgiveness and physical endurance it requires to parent, teach and guide these children through life.
But these are no easy tasks to achieve. Especially with the amount of stress a parent of a child with Duchenne carries.
Research repeatedly shows us that there is an undeniably higher rate of anxiety and depression among parents in our community. These conditions definitely aren’t because the parents are too sensitive, weak, or exaggerating their problems. Quite the opposite. Parents of children with Duchenne are some of the toughest people you will ever meet. They have no other choice.
In addition, the allostatic load itself of parenting a child with Duchenne can significantly distort brain chemistry: the emergencies, the finances, the expectation of what’s to come… Understandably, many parents of children with Duchenne frequently put their child’s needs above their own to meet all these needs. To make life even more complicated, parents of individuals with Duchenne are susceptible to inheritance and genetics just like any other person. Unfortunately, parents aren’t exactly assigned a mental health professional to keep tabs on them over the years.
Even though it may go against every instinct when parenting a child with a terminal disease, parents must challenge the fundamental belief that they can neglect themselves. They must invest in themselves so that they and their loved ones will have the opportunity to thrive.
Their mental health – and the mental health of their whole family – depends on it.