Introducing Rare Resiliency: A column for parents of children with rare, serious, or chronic illness
By Laura Will
By definition of being a parent to a child with extra care needs, you are resilient.
At the very core of the idea of resiliency is a requirement for experiencing hardship, adversity, or difficulty. In the literature on resiliency, there is a lot of talk about ‘bouncing back’ to a steady state that existed prior to the stressor. However, when it comes to being a parent like us, the stressors are chronic, they are often daily. There is no going back to the life before your child’s rare diagnosis; and therefore I feel the language of ‘bouncing back’ is less useful.
Parents like us find ways to activate our psychological system and adapt or pivot with resiliency skills that become ongoing practices to fend off the ongoing stress. Resiliency occurs in the moment after a mistake, in the moment after something painful, in the moment after feeling overwhelmed. Resiliency is the ability to begin again, again and again. Resiliency skills are often subtle, routine practices that offer a buffer and buoyancy.
Perhaps for you resiliency sometimes comes out as humor, or sometimes creativity. Perhaps it’s reaching out to a trusted friend, or taking a calm moment to yourself. I encourage you to take a moment and get curious about how you have changed over the course of your family’s diagnosis and illness, and perhaps how resiliency muscles have strengthened or been strained. Has there been a change in your relationship with hope and with acceptance? Perhaps your own self image, as a caregiver, has shifted. Do you have someone you can call at 3am? Is your inner dialogue kind, encouraging, and forgiving?
Resiliency is a multifaceted and sometimes paradoxical skill set. With this monthly column we will explore the concepts and skills that play a protective role against chronic and acute stress. Each month will challenge and encourage you to continue to develop that inner steadying strength as we face illness and uncertainty, sorrow and joy.