CPN | From palliative care practitioner, to mother of palliative care patient: My year of uncertainty and transformation.

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From palliative care practitioner, to mother of palliative care patient: My year of uncertainty and transformation.

Before entering the house of a palliative care patient, I pause in my car and take a few deep breaths, sharpening my attention for the conversation ahead. Talking with an individual and their family about illness is a wholehearted endeavor. Sitting around each patient’s living room or kitchen or bedroom, alone or surrounded by caregivers, I follow my map for serious illness conversations. With time-tested language, I share a diagnosis, answer questions, explore emotions, make medical recommendations. Each conversation cradles the patient’s life, and death, in the minds and hearts of those present. Something about being so aware of the final contours of a life, makes us grasp for meaning and hold each other with greater acuity.

As a palliative care nurse practitioner, I was well versed in sitting with others’ grief and shepherding them to establish goals of care. Now, as the mother of Alden, I sit with my own grief, everyday. That wholehearted attention I would enlist at moments of need at work is now an attention I cultivate as continuously as possible. His health is unstable. His time is finite. That threat of loss turns up the contrast, blacking out all the insignificant deadlines and unwashed laundry, and revealing only that which is most precious and most vulnerable.

I find my head spinning as I sit on the crinkly paper of an exam room holding Alden. How is it that I am holding the patient, not my stethoscope? Why am I asking, instead of answering, the questions? I trained to be the practitioner, not the patient’s mother. Regardless, I am thankful for the training. It has been immensely helpful in navigating his expansive healthcare team and advocating for his needs.

That being said, sometimes I know just enough to be detrimental to my own mental health. Perhaps it is due to my prior medical knowledge, or just my proclivity as a parent to ask all the “what if” and “tell me every possible outcome” sort of questions; but, I seem to have a painfully well informed picture of all the possible medical and family issues in our future. I struggle to sit with the uncertainty of it all. When will he have his next big seizure? Will it disturb his sister? Will he have regressions? When will he die? Will my marriage withstand these traumas? It is easy to get lost in unanswerable questions.

In the 11 months since learning of Alden’s medical diagnosis I have been working to deepen my mindfulness practice. Instead of sinking into the emotional pain of anticipated events, I am more welcoming of uncertainty. The questions my fearful mind generates are nothing more than passing thoughts. I can follow them into the darkness of the unknown or stay present and allow them to pass. The grief of diagnosis and unanticipated shift from family life I had imagined were catalysts for an inward reshaping: post-traumatic growth. I am learning to live in the moment and trust that I will continue to adapt with whatever comes next. Regardless of what it looks like or when it comes, I will handle the next hurdle.

With this attitude, I now identify as a dragon mom: a mother of a child with a life-limiting diagnosis. I honor the dragon mom in me. She is fierce, and sometimes very angry. But mostly she is strong and compassionate, finding ways to pay attention to the present, to live with sorrow, and to share in joy.


Read more from Laura on her website a dragon mom’s words