When my beloved daughter was diagnosed, at the age of six, with a serious illness – I realized that I had a choice. I could choose to be engulfed by the shadows and blinded by my fear and pain or I could choose to survive; even shine. I could give up my hopes, my dreams, and my career; or I could, as the writer Tanazaki suggests “find beauty in the shadows”. I could continue to look outside of myself and the dramas unfolding in our little family. From my vantage point of darkness, I was perfectly poised to see, and bear witness to, the light.
I have long held the belief that empathy – the dynamic that allows us to understand and share what others feel and experience – is the key to change. To realize that we, are in fact, all connected by our collective pathos and joy – that we are one collective unconscious. That these webs, hidden and unseen, are our safety net - and allow us to survive as individuals and as a humanity.
I could -- if I chose to -- find gratitude and grace in chilly basement procedure rooms holding my daughter against me waiting for lab results that would chart our future. Warmth was found in the quiet moments between those tests and the prognoses meted out by the specialist we saw regularly.
Empathy demands awareness, the capacity to be still enough to create a space fertile in feeling, the room to let emotions blossom.
I realized – that in rooting myself firmly into the grounds of the present - remembering the humanity of each moment, no matter how terrible, I was choosing grace. What I did not expect to find was joy. I could not change the course of the illness that threatened my daughter’s life, but I could create a grace-filled journey filled with beauty and moments of hope.
I could, and would, make choices – and in doing so the penultimate mother’s nightmare would become bearable. My terror would abate. And I would find moments of laughter, and even, at times, whimsy.
My mission as a mother was to ensure that the magic of childhood endured and subsumed the sterile halls of the hospital and the crackling papers of the examination tables. That my daughter would depart childhood, however that should occur, with warm memories comforting her; piling into my bed on weekend mornings to snuggle in fluffy lavender scented quilts, shared mugs of tea by the fireplace; the crisp smell of eucalyptus and bay leaves crushed under our feet as we hiked wooded trails with friends; her face split by a smile and grimy from eating freshly grilled corn on the cob in our backyard; and days and nights festooned with the glitter and glue used to create the magical worlds or mermaids and queens.
I learned to be present - finding love and compassion for myself and others - even in the hardest of moments. I learned to focus on humanity of the men and women who cared for us and worked in the buildings housing the healing.
What I did not realize- was that in teaching my daughter to navigate fear and the unknown with compassion and empathy - we would both experience incredible connection and joy. A richness that might have otherwise eluded us.
When my second daughter became ill –from an entirely different illness – I realized that embracing moments of grace and looking to see my humanity reflected in the eyes of those around us- would save me. Would save us all.
My children are not merely victims of circumstance, nor defined by their cells that run amuck – but contributors to this beautiful world and a larger humanity. They are rays of light in human form who are able to share, like all children, the wonder of childhood and life and who delight in being.
Trauma etches its traces into our DNA to be passed down generation by generation. I wonder what is left on our DNA by the Emergency Room visits, urgent procedures, electrodes and leads, ultrasounds, endless hours in specialty care consults, blood draws, halter monitors, dozens of medications, clinical trials, hushed phone calls to physicians, and the relentless course of illness. I do know that the legacy and lasting effects of trauma can be mitigated by mindfulness, by connection with those we love, through believing in magic and mystery, through experiencing beauty and awe, and by changing the locus of control.
To remember that we always have a choice - we created grati-tools.