The article about the disabled child Ashley brought back so many memories, and had me all over the board in my response to the questions it has raised.

That child and mine had many similarities, the lack of physical control, speech. Not to say she is not, but my son was “there”, he could hold and maintain eye contact. The joy, strain, sorrow, the untold gifts of these children is undeniable.

I thought about the day the Doctor told me he could be an adult of 35”~and all the problems of that, or a 6’ adult ~and how in the world would I lift him then? How glad I was he was not a girl ~ becoming a woman and its results.

All I know for sure is my experience and the one true statement that as a society “we do a pretty rotten job of helping caregivers provide what’s necessary for these patients”. Pretty rotten is an understatement.

I never saw my son as anything but natural, not something to be fixed. The one regret I have in his care ~my failure~ came when I did not listen to my inner voice and permitted a surgery. This happened because I was worn down~ from poverty, the day-to-day strain, and from a constant struggle to send him the message he was fine. The day a teacher said to me “He looks in the mirror, says hey I am different but I like myself” was my finest hour as a parent.

I cannot comment on the choices these parents made ~they and they alone know this child. Each case is different and as in most situations, not a single answer will suffice. However, as a society we must do more for these children and their caregivers. If anyone could look into my heart , feel the pain , the regret at being worn down so…I wish this on no human