Wednesday, February 03, 2016


For the first time in my life, I can’t seem to write anything. The whole overwhelming experience is getting a little hard to bear. Where to begin?

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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