Begin at the Beginning

I was standing in line for the bathroom during a break between concurrent sessions at the Hospice and Palliative Care Association of New York State conference.  Being 6 months pregnant at the time, this situation was quickly becoming emergent.  A woman in front of me noticed my obviously pregnant appearance and commented on how difficult it must be for me to be here (the conference, not the bathroom). When I mentioned that I work exclusively in pediatric palliative care, she looked at me with a face that I labeled as pity.  “You work with dying children?  I could never do that.”  Here, in a place filled with hospice and palliative care workers, I found myself back in the world of the taboo.  I was used to this look and response from family and friends.  I had grown accustomed to not speaking at length about my job during dinner parties and to strangers on airplanes.  Here, in this place where death and dying was the subject at hand, children were somehow still the outsiders.

I began my work in pediatric palliative care, in a way, by accident.  My understanding of the job I began almost 10 years ago was that I would be working with children who were medically fragile.  Coming from a background of working with children who have multiple disabilities, these children appeared to be similar, if not the same.  The first day that I came into work to find that a child had died the night before, it was quite a shock.  Honestly, the idea that death was not only a possibility, but, in many cases, a probability, was shocking to me.  I remember very clearly the first child whose death I bore witness to.  I remember sitting vigil at this baby’s bedside, flirting with the boundary of over involvement, wondering if his mother would arrive before his quickly approaching death.  As his breathing became erratic and more distressing (for me), I called the pediatrician.  “Do something,” I implored of him.  “I can’t,” he calmly replied, “but you can.”  Something clicked in my brain at that moment.  He was right, in many ways.  While I may have not had the knowledge or language at that time, I mark this moment as the beginning of my journey into pediatric palliative care.

With children, especially infants, I often feel like I’m living on the exact razor thin edge between the beginning and ending of life.  Here in this middle section, the story of this particular child lives.  I am honored to do this work.  I am humbled to witness the depths of sadness and the height of joy.  I am challenged to remember that each child’s story intersects with my own for just a moment.  It is not my own story, but just a piece of my journey. Mercedes Pavlicevic (1999) beautifully states, “I do carry these things around with me, things to do with suffering, fears, people’s pain—and yes, I have the capacity for carrying. […] I make use of that space all the time, and sometimes the space gets filled up and I need to empty it.  At other times it empties itself.”  Perhaps, for me, this blog is a sort of emptying.  Perhaps it is a time to refill.

I look forward to sharing this space with all of you.  I hope you will take from it what you need and leave behind what needs to be left. I am thankful for the opportunity to embark on this journey with colleagues and friends.

Pavlicevic, M. (1999). Music therapy: Intimate notes. London: Jessica Kingsley Publishers.

Image courtesy of Sura Nualpradid/

5 thoughts on “Begin at the Beginning”

  1. Kristen, the word “taboo” is all too apropos. Strangely enough, I had never associated that word with my work, but I’ve certainly experienced that vibe. And I’ve also become extremely hesitant in social settings to identify the kind of therapy I do or that I work in hospice. At times I’ve felt like a coward for avoiding the topic, at other times like a traitor. Most of the time, I think I’ve taken the uncomfortable responses all too personally. However, this gives me reason to distance myself from all three habits!

    P.S. The Pavlicevic quote bears great wisdom; thank you for that, too!

    1. Jill, I’ve similarly avoided talking about working in EOL care in social settings, largely because I’m easily affected by the high degree of discomfort many feel around the ideas of death and dying. For the vast majority that’s not through any fault of their own – ours is a society that does not actively engage in meaningful discussions about death (and it could be argued that we probably trivialize it given the excessive of violence from cartoons to thrillers that we’re exposed to), and it’s hard to directly address one person’s mortality without addressing your own. Perhaps that makes me a less-than-great advocate, but sometimes I need a moment to not make room for another’s discomfort.

      1. I would like to share an interesting moment that I had last year. I didn’t think my extended family really knew the extent of my work in palliative care because I had stopped talking about it long ago. However, when we were surrounding my grandmother in her last days, several aunts actually asked for my opinion about when to call the others and how much time I thought she had left. Perhaps more people know than we realize. Perhaps they are not ready to think about it being a part of their life until they have to.

      2. “Perhaps they are not ready to think about it being a part of their life until they have to.”

        That’s a great point, Kristen. That brings to mind those moments when you can see caregivers and patients tap into some deeply engrained instinct and begin to grieve and die “well”.

  2. Kristen, I was just having this conversation with some therapists this past week at our consultation group. Speaking the unspeakable . . . it’s kind of what we do, isn’t it? Thanks for giving us a place to speak about our experiences and witness others’ too. And, thanks for giving us a place to just hang out. I look forward to following your blog.

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