Introducing Rare Resiliency: A column for parents of children with rare, serious, or chronic illness

 
An image of mountains and a valley, with a lone tree standing resilient among the rocky mountainside, reflecting the resilience of rare disease caregivers
 

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, and 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 acceptance? Perhaps your own self-image, as a caregiver, has shifted. Do you have someone you can call at 3 am? 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.

About Rare Resiliency:

Rare Resiliency is a monthly column written and/or curated by Laura Will. This column explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy.


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Laura Will

Laura is a mother, wife, friend, sister, and nurse. When part of her identity became the mother of a child with a life-limiting medical condition, poetry became a powerful outlet. Follow her journey at her website, www.adragonmomswords.com, or on her instagram Instagram @lauramonroewill #aldenanthonysmiles


http://adragonmomswords.com
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Cultivating Flexible Hope: A look at the emotional cycles in chronic illness

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Primary Mitochondrial Myopathies: Researchers Explore New Pathways for Treatment