I DESERVE… to be understood and treated as the individual I
am. I deserve to have my language of cues and signals understood by you, my
caregiver. My grimaces, hand stretches, frowns and hiccups are as meaningful as
any words, but delivered in the only language I know.
I DESERVE… your recognition that I may be completing many
months of my physical and neurological development outside the protection of my
mother’s womb. Even as you give me the life sustaining care I so badly need, as
much as possible I deserve to have the boundaries, quiet, warmth, gentle
stimulation, dim lighting and fetal positioning I would have in my mother’s
womb.
I DESERVE… periods of uninterrupted quiet so I can use my
energy to grow and not hopelessly trying to overcome excess light, noise and
over stimulation.
I DESERVE… the warmth, tenderness and comfort of being held
by my parents as soon as they feel comfortable and when my medical condition
allows.
I DESERVE… the positive energy of love…your kind thoughts
and words as you care for me…my father’s soft touch…my mother’s gentle words…a
volunteer’s quiet rocking. I deserve these things because in your heart you
know their worth even though their absolute clinical value may never be proven.
I DESERVE… your understanding that what is normal and
routine for you, as my caregiver, is abnormal and frightening for my mom and
dad. So please answer kindly no matter how many times they ask the same
question. They deserve your support and understanding and the support of other
families as they go through the roller coaster experience of the NICU.
I DESERVE… your recognition that my parents are an integral
part of my caregiving team and should be allowed and encouraged to the best of
their ability to help care for me during my stay in your hospital.
I DESERVE… your understanding that part of your job is to
help my family bond with me as we learn to trust each other in preparation for
my homecoming.
I DESERVE… continuity of care from the NICU to my home… from
my neonatologist to my primary care giver… so together my family and I can
reach our full potential.
YOU DESERVE MY THANKS AND RECOGNITION – I AM HERE BECAUSE OF
YOU!
Read McCarty was the founder and former CEO of Hawaii
Medical and Children’s Medical Ventures, Inc. He dedicated both companies to
improving the health care of children and making the practice of developmentally
supportive/family centered care the standard of care in the NICU. Thanks to
Olivia and her family. Please feel free to copy and share.
