When the Lightning of a Rare Diagnosis Strikes Twice in Your Family


Yesterday I rode a dharma boomerang. 

I awoke to the news that a beautiful friend had left her body far sooner than any of us imagined, leaving her two young daughters motherless.

And by the end of the day, my 10-year-old daughter had formally said goodbye to the members of her medical research team who had administered life-saving experimental drugs through a clinical trial over the past year.

Between those two monumental and life-changing events, I had taken my youngest daughter to urgent care. A visit that resulted in an unexpected and immediate consultation with a pediatric neurologist for the rare and wretched disease that threatens her wellness and tries to steal her health.

It is a disease unrelated to her sister’s — evidence that lightning does in fact strike twice, and over and over, in the same place.

Life and death —  and all the in between — in the same twelve hours.

Only a week and one day earlier, I was graced to hold my friend in my arms one last time and to share our final spoken words. I joined her friends and daughters to love her intensely and with complete focus, as she prepared to move from where she lay and enter hospice in the house of her childhood. A home with a magical and healing garden, a garden her mother still tends.

Yesterday, for the first time, I wrapped my arms around my 10-year-old without the specter of a life-threatening illness shadowing her future.

It was a profound moment of catch and release. A moment that is certain to be felt more deeply in the days that follow. As she leaned into the hug and squeezed me tight with arms plump with childhood, I felt graced and overwhelmed with our good fortune, even as we fight the shadows of my other daughter’s illness.

​We are outliers of luck of all kinds, enveloped by endings and new beginnings.


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