BY CARYN ANTHONY

I don’t believe everything happens for a reason, and I don’t think that every cloud has a silver lining.  Sometimes there is no bright side.  It’s not that I’m a pessimist or a cynic; it’s just that life has taught me that everything doesn’t always work out for the best.

I do believe that people mean well when they offer their cheerful aphorisms.  They want to stir hope that will encourage us in troubling times.  And I agree that a positive attitude can help sustain our energy and fortitude.

However, I also know that life can be unpredictable and unfair, so unfettered optimism sometimes needs to be tempered by sober reality. 

Finding a balance of both sides helped me while I was caring for my son Robby through his serious illness. I admired the can-do spirit that fueled his drive for independence, and that spirit was at the heart of our family’s resilience in the face of daunting adversity.

But my son’s illness was wrapped in considerable uncertainty, and we were often powerless to change the outcome even with our most determined optimism and advocacy.  It was painful to learn that sometimes bad things happen despite everyone’s best intentions and efforts.

Over time, I found something to learn in any challenge – a new skill, a different perspective, or maybe just the grace to accept the inevitable.

And I reimagined my definition of hope – maybe a cure wasn’t feasible, but we could concentrate on ways for my son to feel better more often.  Perhaps he would face new limitations, but we could commit to empowering Robby’s choices whenever possible.

It wasn’t exactly a “silver lining”, but finding a new perspective did help me keep going…

Because Robby’s illness followed a highly unusual path, his team went beyond the usual standard of care, and their commitment re-energized my hope for facing the next challenge.  Like any parent doing their best to muddle through, I learned from a bumpy path of trial and error.

I quickly realized that my judgment was crucial even if I’m not a medical expert because I was an authority on my child and our family’s best interests.  I grew to trust my intuition, to make choices that reflected our values and style, and then to live with the implications with fewer second thoughts and regrets.

As I adjusted to the responsibilities of caregiving, I leaned on old skills and developed some new ones.  My knack for organization was extremely useful, but I sometimes struggled against the uncertainty that could not be “fixed” by dogged research or a comprehensive checklist.

On the other hand, my confidence grew as I built trust with the professional team treating Robby and I became more conversant in the medical vernacular and processes.  I relied on my growing capacity in fast-moving crises, or to fortify my resolve for recurring challenges. I could not (and did not want to) ignore the emotional toll of a situation, but I felt steadier when I was able to call on calm rationality even under extreme pressure.

Eventually we ran out of new protocols to try. It was hard to accept that “everything will work out” optimism was no longer possible, and some people around us became less engaged.  It made me appreciate the precious loved ones who remained and were indispensable supports as we strung together small moments of respite, diversion, and humor to make the best of the present.

And walking through these trials inspired me to connect with others in similar circumstances. 

Four years after his diagnosis, Robby died at age 20.  I was changed forever – with both a burden of sadness and a gift of insight — and I felt compelled to preserve my hard-won lessons.  I wanted to offer ideas to ease the path of other families, to share insight with providers about their practice, or to help readers feel less alone by seeing their fears and feelings in other stories.

I know more now about how to support someone in crisis – how to be present but not intrusive, what to ask, what not to ask, what to offer.  I’m grateful to be able to use my story to create common ground for understanding another’s pain, and I am determined to make meaning with that experience.

Thinking about the formidable demands on caregiving parents, I imagined a sturdy tree.

Grounded in deep roots and steadied by the rings of experience, the tree’s ability to weather a storm comes from the flexibility of its limbs and the space it allows for strong winds to blow through the branches. 

I believe parents embody this metaphor — guided by their deepest values and profound lived experience, they grow in new directions and choose when to hold firm and when to adapt with the forces of change.  Optimism is a powerful motivator, just as realism is a necessary awareness.  Parents need to be able to see all the angles, and there is rarely a clear demarcation between the bright and dark sides. They are intertwined together, adding complexity and depth to the picture.

*****

This is my final post as a blogger-in-residence, and it has been an honor to have my voice join the CPN community. I tried to bring a down-to-earth perspective to the world of caregiving as a parent.  I hope that my stories have resonated with your experience or sparked an idea or just brought a smile. Most importantly, I hope that they have affirmed your own innate ability (and right) to keep your child at the center of care because you are the best expert in the needs of your family, and because you are always who your child needs most, any way the wind blows…

You can continue to follow Caryn’s writing beyond CPN through her blog at: https://canthony.medium.com/any-way-the-wind-blows-65dc39e455ab