Smith-Magenis syndrome

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Smith-Magenis syndrome
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I’m new here!

Hi, my name is kristakarr. We have a daughter diagnosed with Smith Magenis Syndrome #sms. #smithmagenissyndrome

#MightyTogether

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Rare Disease Day 2021

I’ll be wearing mine for Smith-Magenis Syndrome. Why will you be wearing yours?

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chromosome 17p

welcome to transparency
and the mess that is me:

mistakes committed,
failures admitted

sometimes i'm flying high on a cloud,
and other times i wish i was buried deep underground

the peaks and valleys-
can we just fast forward to the finale?

exhausted and spent,
with nowhere to vent

i'm grasping at straws,
and all i want to do is withdraw
from the hard part of life,
and just eliminate the strife

i just want to be carefree,
reclaim my intact psyche

that lies dead on the ground
broken and bound,
with no hope of being found.

i question my existence,
pray for sustenance or deliverance,

two sides of a coin;
separate not conjoined

which one will i choose-
or will it choose me? can i just refuse?

the fact is, correlation is not causation,
although that tenet does absolutely nothing to soothe my frustration
against this rare, unfair chromosomal mutation,
a minute genetic aberration
responsible for so much devastation,
with unfathomable future implications...

i dig deep,
searching for my inner determination

in a sea of pain
that threatens to drown me under the strain;

weighted and heavy
not leaving me with any
strength

to overcome this syndrome
that i cannot fathom.

and then, i catch a glimpse out of the corner of my eye,
and realize i need to look no further than my angel's sweet smile

and i can forget for a while,
and recognize the ability

despite, and in spite of, her disability

and that realization nourishes and energizes me
to continue this journey,

gives me the strength of a thousand elephants,
and that damned deletion becomes irrelevant

because my child is significant
and what is, is what was meant

i am uplifted
no longer restricted

by society's limitations-

choosing to live by the standards of our own boundless expectations.

#MightyPoets #SmithMagenisSyndrome