Thursday, January 23, 2014

Thought-Filled Thursday: ONE

I've met head-on with several nasty remarks and equally disgusting opinions on the topic of hydranencephaly over the course of the past 6 years. It's part of being an advocate... 
In case you are unable to read the details contained in the message above, here's a little background to the most recent conversation brought to my attention:

The topic is a news article on a little girl who is 6-years old living with hydranencephaly.
(she happens to be connected to GHF) Because the condition is deemed "incompatible with life" there is of course a slew of ethical debate comments. Most often these conversations turn in to personal attacks on the level of selfishness of the parents to make the children "suffer" and participants also tend to juggle around comparative links between the children and miscellaneous other species of animals, plants, and even inanimate objects. 

This particular conversation's point of note:

comment: "I don't think that to be human you have to have a working brain. And I don't think that you have to have a working brain to be able to be loved, cared for, and to contribute to society by your mere existence." 
response: "Well, you're wrong. You do. Without a brain, you're a shell. A vegetable. That's not, like, up for debate. You need a brain to be human." 

~from Straight Dope's Message Board (titled: The Implications of Being Born Without a Brain)


Me too.

What's worse is that this thread is one of the least disturbing I've had brought to my attention in the years since becoming a parent to a child with hydranencephaly. 

But it happens far more often than you'd like to imagine; and it's next to impossible to defend your stance in a forum run by like-minded individuals with less brain than these children with hydranencephaly. 

But, I still cannot keep quiet.

I still believe that it is more important to share our stories and speak up against the ignorance; if only the ignorance would challenge me directly instead of trolling around and creating discussion forums to mock and ridicule our families. 

I think we can all agree that as an individual we often feel powerless to make much of a difference in the world as a whole. 

So we just let it go.

This is a problem. Conforming to avoid debate or confrontation does not solve anything. Working to raise awareness and gaining greater respect for children living with these conditions, as well as their families, will always bring adversity. Along the way, it will surely stir up the trolls who like to come out and play behind their keyboards. 

Believe it or not, you alone can make a difference and I hope you will not just ignore the words that hurt you as a parent or loved one to a child with hydranencephaly; nor the things that hinder progress of our families and this foundation to change the way that the condition and our children are represented online and in every community.

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