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Reflections of a Pediatric Palliative Care NP
I retired from nursing two years ago after 40+ years, first in pediatric oncology and then as the PNP on a Pediatric Palliative Care service.
My predominant feeling about my career is gratitude. Gratitude for connection with children and families which were meaningful, sometimes painful, sometimes joyful, many unbelievable and yet they were most definitely true.
Here are a few I hold close:
I was called one night to a home filled with a little boy’s family and friends, overflowing the kitchen & living room. The parents asked me to help relieve his pain. He didn’t speak the same language and yet we communicated with our eyes and hearts.
Another time I was a clinical support for 2 parents as they loved their newborn mightily for 4 days. Then years later, with pride, I participated in the “pinning” ceremony of his mother as she earned her nursing degree.
It seemed unthinkable and yet made many smile as our team negotiated a pass from the hospital for a teen to attend her middle school dance. Her IV line was hidden by her new dress and ready for antibiotics upon her return.
Another day, I took a medical fellow on a home-visit where we coincidentally both dressed in lavender – to the delight of mother and daughter, their color for hope and joy.
When I supported staff as they cared for a little one for whom the parents and team together had decided that one more round of antibiotics was not going to improve his quality of life but rather prolong his suffering.
When I was part of a team that competed to wear the best geometric design in hopes of getting a young man’s smile so that he might interact with us that day.
When I was asked to return to the hospital on the weekend by a young adult close to end of life. My work was to be with her, to hold the space, and be present as she told her family of her love, her acceptance of death, and her gratitude for her life.
Finally, in teaching symptom management and communication to clinicians in the hospital and community, I know that the greatest impact is hearing the voice of a parent describing her child and family’s experience.
So, it now feels right to step back in with Courageous Parents Network which is about courageous individuals connecting, sharing their experiences, giving voice to the unspeakable, living with and through the best and worst, and finding support and growth possibilities in each encounter. I have joined CPN because I want every nurse and every provider and every family to know about CPN. The resources are extensive, simple, poignant and have the potential to decrease isolation, add clarity, empower decision making and touch the heart.