I haven't been able to
get the word suffering out of my head recently. It just
follows me around like a real-life version of Jiminy Cricket, constantly there,
unable to shake, just lingering. Every time I watch her seize, when I see
her confined to a chair, when she is laying in the same spot on the floor, as I
lift her from point A to point B, essentially all. day. long. The mental
follow up thoughts are why, and for how much
longer? It really is such a delicate place to be, unable to
comprehend life without her in it, and wondering when G-d will end-all of her
pain and suffering so she can actually be able to truly rest.
I often wonder what
she must be thinking and experiencing herself. What does life look like
through her eyes? We don't get the opportunity to know her thoughts or
feelings. We assume the majority of what she is communicating. We
make unthinkable decisions on her behalf. Her body does the same thing on
repeat daily, with only stopping if she is sick. Days full of seizures and the aftermath that
they bring. Medications that I am sure
cause side effects she doesn’t even complain over because it is her norm. She
is forced to experience constant seizures that are unable to be controlled and
unwilling to give her an opportunity to truly participate in life.
It breaks my heart to
watch her suffer like she does. It breaks my heart that we have failed to
bring her any type of relief no matter how much we have done or how much we
have tried. It breaks my heart that
there is not a single thing we can do to stop this vicious cycle of attempting a
remedy and failing miserably or sometimes less miserably. It doesn’t help and I don't want to be told:
"she doesn't know any different" because that does not make it
okay. It does not make it justifiable. It does not make me feel
even an ounce better. And most importantly, it does not reduce any of her
suffering.
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