NHPCO NewsLine Spring 2022 - 19

A PERSONAL REFLECTION
ON 30 YEARS OF
GLIMMERS OF HOPE
By Stacy F. Orloff, Ed.D., LCSW, ACHP-SW
I've been directly involved in pediatric hospice and
palliative care work for over 30 years. I began my work
as a pediatric social worker at a very large hospice
whose children's program was mostly focused on
healthy children of adult hospice patients. We did care
for a few ill children, and I was grateful to be given the
chance to work directly with them. I clearly remember
the first family that taught me about
hope. They had three sons, two with
hemophilia, one of whom had contracted
HIV through a blood transfusion. Where I
saw a very young pre-teen with a fatal
disease (this was in the early 1990's and
HIV was mostly a fatal disease then), he
saw himself as a pre-teen with a lot to
conquer. This young man taught me
about life. He taught me to see a
beautiful wildflower in a sea of weeds. He
taught me about having fun, even if that
meant playing basketball with him while
wearing a dress and heels. He taught me
to face my own fears when he placed a
very large iguana lizard on my arm! He
taught me about living each day to its
fullest, not knowing how many days there
were. And, when his days were
diminishing, he, as a young adult, taught
me how to say goodbye with grace on the
telephone. This young man lived every day
full of hope and fun.
IT'S ALWAYS
SOMETHING, TO
KNOW YOU'VE
DONE THE MOST
YOU COULD.
Each child I met early in my hospice career taught me
something about hope. Every life mattered and I learned
there is much to be hopeful for and about. As I was
promoted into different leadership positions over the
last 30 years, I wondered if I would lose that sense of
hope and wonderment. No longer working directly with
our pediatric patients and their families, would I lose
sight of moments in time which sustained
hope to so many? Thankfully I found out
the answer to that question was a
resounding no.
BUT, DON'T LEAVE
OFF HOPING, OR
IT'S OF NO USE
DOING ANYTHING.
HOPE, HOPE TO
THE LAST!
Charles Dickens
Hope to increase access to care is what
propels me to design new programs and
services for ill children and their families
in our service area. Advocating in my
state and nationally for those who are
often not heard and frequently
overlooked gives me hope that when a
family asks for a service we can say, " Yes,
we provide that type of care. " Developing
deeper collaborative relationships with
other providers so that we decrease the
silos that are found in our healthcare
system gives me hope that navigating
through the healthcare system becomes
easier and more children and families are
more quickly connected to care providers.
Seeing ourselves less as competitors and
more as partners in service to others
Newsline / Spring 2022
19
NHPCO NewsLine Spring 2022

Table of Contents for the Digital Edition of NHPCO NewsLine Spring 2022
