Elephants and Tea - September 2019 - 6

Caregivers

CHILDHOOD CANCER AWARENESS MONTH

and anxiety at any moment when the child
may once again be put at risk.
Through my own experiences and the
stressor of treatment as a primary caregiver
of a child with cancer, I myself was diagnosed with a sleep disorder, thyroid disease,
endometriosis, ulcerative colitis and had a
partial hysterectomy all before the age of 40
years old. To be very transparent, my son had
standard risk leukemia with a good overall
outcome. I can only imagine the potential
impact on parents with far more complicated
diagnoses and less favorable outcomes with
greater long-term effects.
Most of these parents are suffering in silence and pain.
Based on Dr. Kearney's research, if we can
begin to consider cataclysmic attachment
trauma as a potential norm for parents as
their children grow to be adolescent and
young adult (AYA) survivors of childhood
cancer, there must be strategies developed
to help both the parent and child begin to
safety find an environment to separate and
grow from each other...together.
Although not qualified to say what these
steps may be, I am happy to share our personal experiences that continue to benefit my
relationship with my son, and have helped to
alleviate my own stress in the process.
SMALL STEPS, MUTUAL UNDERSTANDING AND BUILDING A
FRAMEWORK FOR TRUST.
As we began our own process, that thankfully
was complemented by rituals of high school
and the teenage years, yet certainly still punctuated with times of sickness and obstacles, we
purposefully began our conversations about
the future.
Although there were many moments of pure
sadness that those quick and intense looks in
my direction rarely happened anymore, and
that I was less needed or wanted as a protector, there were also late-night conversations
about his past, our beliefs as a family and

how although we can't always control what
happens to us, we can do our best to limit risk
and build trust with those around us. I made
it clear to my son that growing apart wasn't
going to be easy for me,
but I understood that he
needed to become independent and responsible
for his health. I promised
him that I would respond
versus react when I felt
the internal pull to protect him. He promised
to not hide things from
me and make self-awareness about his health a
priority.
A l l I ever wa nted
during the darkest days
was the opportunity to
watch him grow up. I never took a moment
of it for granted, yet when it came to actually
letting go, it did not make that piece any
easier. The bond we shared while saving his
life is not something I will ever let go of. It
is part of who I am, and it is part of what
continues to heal me in the aftermath of our
cataclysm. We had that moment together as
parent and child, and it was equally painful
and beautiful.
However, for him, that same bond was
a restriction to his future. It is his evolutionary right to be free, and it is my duty
to let him go.

our chi ldren have t heir independence,
to trust the process and that they WILL
be okay. I spent years preparing for this
moment of where nervousness and relief
intersected and I hoped
that at the moment my
mind would afford me
the gracefulness of surrendering the control I
built to sustain balance
i n what I u lt i mately
could not control since
our world was abruptly
interrupted nine years
before.
I heard sniff les and
tears, but my seasoned
c o pi n g m e c h a n i s m s
just turned me numb
to what was happening around me. Internally, I wondered if
anyone else in the room could relate to the
struggles and pain we experienced during
his child hood. Did anyone else in t his
room spend years with adrenaline-filled
veins at each sign of distress, fever, bruise
or body ache?
Did anyone else know the effort behind
the years of mending a broken heart every
time they watched their child fail or succeed at something that is important to them
during a childhood milestone?
The answer was probably yes, but even in
the crowded room, I once again felt isolated
and alone. Cancer always has a way of doing
that in the least expected moments. Now,
I had to let go both of him, and my ritual
and routine in keeping him safe from harm.
This was yet another unexpected hurdle
in pediatric cancer that was now placed in
front of me.
Like so many of the other hurdles we
experienced before, the only choice was
to move forward, see what happens next,
take a deep breath and step once again into
the unknown.

"Did anyone else
in this room
spend years with
adrenaline-filled
veins at each sign of
distress, fever, bruise
or body ache?"

A NOT SO SMALL ROOM
Once again, I found myself sitting in a room.
This time, I was only surrounded by other
nervous parents who were also experiencing
the internal shift of change from protector
and guardian to standby witness and adviser
at best.
This was the final threshold before letting go.
The col lege Dea n at t he podium encouraged us to not call too much, to let

K I M BU F F, MOT H E R OF A SU RV I VOR , IS T H E FOU N DE R & E X E C U T I V E DI R E C TOR OF MOMC OL O GY,
A C OM M U N I T Y-BU I L DI NG NON PROF I T ORG A N I Z AT ION C OM M I T T E D TO SU PP ORT I NG C A R E GI V E R S OF
C H I L DR E N DI AGNOSE D W I T H C A NC E R T H ROUGH I N NOVAT I V E PE E R-BA SE D PRO GR A M M I NG . S T U DY I NG
BIOL O GY W I T H A PR E-M E D T R AC K . K I M IS H A PPY TO R E P ORT T H AT B OT H SH E A N D M AT T H E W M A DE I T
T H ROUGH F R E SH M A N Y E A R W I T H F LY I NG C OL OR S . TO L E A R N MOR E A B OU T MOMC OL O GY, OR TO R E F E R
A C A R E GI V E R OF A C H I L D DI AGNOSE D W I T H C A NC E R , PL E A SE V ISI T W W W. MOMC OL O GY.ORG

ELEPHANTSANDTEA.COM
SEPTEMBER 2019

Cited Research: Maternal Health Symptoms in Pediatric Cancer Survivorship: When the maternal caregiving system experiences a mortal threat; Joan Kearney, PhD APRN;
Yale School of Nursing. Special Research Acknowledgement: The mothers of Momcology for participating in this community engaged work.

http://www.momcology.org http://www.elephantsandtea.com

Elephants and Tea - September 2019

Table of Contents for the Digital Edition of Elephants and Tea - September 2019