Being a parent of a child with disabilities is hard enough.
When the child grows into adulthood, and you still bear the burden of the
child, it magnifies the conditions and make them more extreme. To watch them
suffer is insufferable, unfair and leads down the path of tears sometimes. It
is hard. But I can’t cry until everything is in place and I can rest that there
is time to cry.
Life is hard when you realize that you are not the person
you were 20 years ago, and where did that time go? You can not longer withstand
the rigors of dealing with situations that dictate what you do and how you do
them, and fear takes over. What will happen to my daughter when we are gone,
mamma has the fear and so do I. Will someone care for her, will someone
advocate for her safety, well being and will some one give her respect and
love?
I am sitting next to her in the hospital, it is 7:01 AM and it
is quiet, except for the music that continuously slides out into the air where
I can capture it, soft low key piano and flute notes that plays a symphony to my sadness
and lonely state of being, an almost funereal cloud cast across my vision.
Today I am hopeful
that the hospital can find Ellen a rehab facility that is acceptable, one that
is not neglectful, dirty and lacking in fulfillment to promises made. Where she
was prior to her last operation and where she is going with my insistence are
two different places. I had a struggle with the surgeon who admitted her under
ambulatory surgery. It is a long story and when I have the stomach to reiterate
what I said to you, I will, since the events so far are working out in my
favor, but let me say this, the staff at St. Charles and AHRC Suffolk are
trying their best, they are beautiful people and my daughter’s biggest allies,
advocating for her a strongly as possible, and have helped Ellen and her
parents immeasurably. Thank God!
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