"When we are no longer able to change a situation, we are challenged to change ourselves." - Viktor Frankl
Having a Kid with a Chronic and Complex Illness Is A Situation That Doesn't Really Make Sense -
Just for the record - I am not by nature an optimist - nor temperamentally grateful. I am bit prone to overthinking and anxiety - so having both my kids get sick really rocked my world view. I am also a problem solver and a minimizer so it took me awhile to realize that my life, and my identity, were about to undergo a profound and permanent transformation. I didn't, and don't, ask "why?" as much as "how?" am I going to manage.
In talking with other caregivers, I realize that there are some shared experiences and practices that have been part of our journeys in accepting that we, and our children, are going to live with illness and all that goes with it for the foreseeable future. It took me, and others, awhile to:
In talking with other caregivers, I realize that there are some shared experiences and practices that have been part of our journeys in accepting that we, and our children, are going to live with illness and all that goes with it for the foreseeable future. It took me, and others, awhile to:
- Move from the shock of "This Is Not My Beautiful Life How Did I Get Here...." to moments of grace and joy
- Make meaning of something that doesn't make sense at all - like having a really sick kid
- Be grateful
- Connect with others
- Choose "action" over "reaction"
- Leverage mindfulness and gratitude practices to increase resiliency
- Find hope when things seem pretty hopeless
- Laugh, live, love and dream
I challenged myself to change - to find joy, to find gratitude, to embrace whimsy, humor, and the magic of small moments..
It took me awhile - it was actually when my second child got sick that I was going to fundamentally change. My oldest daughter was born with an incurable, ultimately life-threatening often life-ending, illness (she is cured thanks to our choice to take part in a clinical dosing trial for a new drug) and my second daughter got diagnosed with a totally unrelated rare disease just as we entered the clinical trial for my oldest daughter. There is no cure on the horizon for her illness, no promising drugs in the pipeline - so illness and pain are part of her childhood and part of our family. But so is a profoundly magical and joyful life.
RESOURCES:
I started an organization called "Kids & Caregivers" to provide the nitty gritty resources and research that have helped me and other parents deal with chronic childhood illness.