I’m new here!
Hi, my name is kristakarr. We have a daughter diagnosed with Smith Magenis Syndrome #sms. #smithmagenissyndrome
welcome to transparency
and the mess that is me:
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
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.