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


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    Rare Disease Day 2021

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


    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

    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