In search of my lost voice

I guess it must have happened slowly and over time. I didn’t see it coming, although in hindsight, it should have been clear. At first, perhaps the butt imprint in my desk chair became a little more pronounced. I noticed I wasn’t meeting my daily step goal on my Fitbit. Then a day went by where I made no music. Then two days. Then it became most of the week. In fact, I did little more than what was necessary to keep the day-to-day going at work. It wasn’t until the holidays came that I realized the glaring reality—I was burning out. Continue reading “In search of my lost voice”


Mothering Our Clients–Mothering Ourselves

Note: In true “new mom” fashion, I drafted this post in August. It has taken until now for me to complete it!

Sometime last year, Noah and I were chatting about parenthood, our work, birth stories and death stories…you know—the usual light-hearted conversation topics! He wondered how it was for me to be a mom while simultaneously working in pediatric palliative care. I have long since wanted to blog about this topic, but struggled with what exactly I wanted to say. What follows are some thoughts that came to me during a long stroll with my infant daughter. Continue reading “Mothering Our Clients–Mothering Ourselves”


The End is Near?


Sustaining Long Term Work with Persons Who Have Degenerative Conditions

I walk into Leah’s room for the second time this week.  She is positioned on her side with an oxygen mask askew over her face.  She is curled up in the fetal position, knees into her chest.  Her eyes are partially open, not really seeing.  She is covered with a weighted blanket, an attempt to slow/stop her almost constant jerking movements.  In summary, Leah appears to be exactly the same as I left her just two days earlier.  For the most part, this is how Leah has looked for the past three years.

I know this wasn’t always Leah’s existence.   Continue reading “The End is Near?”


Music After Death

I recently won an award.  It was a complete surprise and I believe that I was nominated by several administrators and colleagues.  The award recognized me as an “Employee of Distinction” by an association for excellence long term care facilities.  I was obviously honored and completely surprised.  I was also, truthfully, feeling a bit perplexed.   Continue reading “Music After Death”


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. Continue reading “Begin at the Beginning”