I do not know how to say what I want to say. It is an outrage that this again happening. As a parent I would not do this to any of my children. I do not know what to say.
I have read your blog today. How can I help. My tears are not enough. The big red blob of rage inside me needs an outlet.
There was an article in yesterday's Washington Post: I'm Not Dead Yet! The author railed against the Living Will she'd been asked repeatedly to sign, being given 30 seconds to scan an extensive legal document in the hospital which, in the repetitiveness of her being asked for it, seemed like her being pushed to die quickly and cheaply and get out of their way. She decried the lack of reverence for the desire to hold onto life however it might come. She made good points that hopefully will resonate with the now-able-bodied; it's a start.
I... gah. Where does the best interest of the child leave off and the convenience of the caregiver begin? The more I think about it, the more I think these cases cross the line. I think. But caring for a child who is profoundly disabled physically and whose mental disabilities mean he will never be a moral actor, so the parents have to do it on his behalf, is... not easy.
Lately we have tried everything but a straitjacket to keep Taz from pulling out his feeding tube. He wears an abdominal binder and a bodysuit at all times, and sometimes we pin his shirt and pants together, and still he manages to get it out now and then. We would never actually put him in a straitjacket, much less anything more drastic, but it does wear us down.
I’ve been over there, at Kay’s, trying to leave a comment. Sometimes more than once a day, but I can’t. I read the post, I scan it and recoil, clicking away again, feeling as if I’ve touched a filthy contaminant, a cesspoll of poison.
I do this too. I read something that resonates or hits me so deeply that I can't begin to express that in comments, yet I come back repeatedly to try.
I don't feel I have the right - as a parent of able-bodied children, who are already a handful to look after - to comment on what would be ethical or correct for Katie, or for Katie's mother to do - or NOT do. To assume that Katie's mother is being selfish in her situation - I believe - is wrong...but even saying that much is far more than I wanted to say on the issue.
However, the story I won't be able to get over for a long, long time is the story of Ruben Navarro. Maybe now that I've read it, and know it, I'll never be able to forget it, and maybe it will forever make me angry. That is a horror story. That is a crime. And it makes me want to rip the eyes out of the people responsible for his death.
...but as far as YOU are concerned - You have way too many people among your friends and family who would die for you - so you should never feel unsafe.
As a mother of 2 children who are not perfect, I couldn't begin to imagine having to do anything to hurt, change my children in order to make life easier for me.
We all need to speak up. One on behalf of a child who cannot speak for him/herself. And two, to help the parent involved not to feel alone in making choices. There needs to be greater community/social support for these parents so they don't feel they have to take this task alone.
Keep talking, Lene. Many people are listening.
Good God.
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