Ooops, maybe

I wrote a post, and then took it down. It may have been too mean or incendiary.

It was about another blogger who boasts about interfering with doctors and nurses caring for other kids, how he is always giving his opinion to others on what they should be doing. He, like me, is a single dad of a severely disabled child. Obviously, I disagree with his self-described actions. I did not name him, nor his blog.

During the short time that post was up, I got this comment on it:

Having read your posts and having trust in your judgments (most of the time), I ‘m going to assume this blogger is truly a pain. However, he has touched on some important things. One of kids spent a lot of time in the hospital, and, yes, I made it my business to know as much as I could regarding his care. It is to the credit of the medical staff then and there that I didn’t catch much that were mistakes, but there were some made. He nearly got blood once when he did not need it. I’m glad I caught it because a few years later we were notified that anyone given blood at that time might have been given tainted products. Another time, a kid nearly got the wrong chemo. He was on the same regiment as my son, and I knew the protocol cold. I also knew what interval he was from where my son was, so when I saw what he was about to get, I questioned. The meds were immediately removed. They screwed up. Yeah, it happened. Other things were minor, but yes, sometimes things were not done properly. Mistakes were made.

I, too, belong to a message board with other parents who shared my experience or are undergoing the same now. It is a very active board, and we learn ever so much from each other. I’ve never seen any problems on the board and no one monopolizes it. It’s the friendliest board with the best sentiment of any I have seen. Not that we all agree on things, either. There is respect for different views and appreciation that others share them. And I have to disagree with you about the guy in the lawyer’s office. There have been times when a parent truly needed to be told something was wrong with a child. There was even a case where a cancer diagnosis was made from an internet picture when an observant outsider noticed the “white eye” characteristic to retinoblastoma. Yes, she could have been wrong, but she wasn’t. Pearl Buck did not really “get” that her child had issues until someone pointed it out to her. A little boy I know was diagnosed with a syndrome that was missed by his doctors and not noticed by his parents, but picked up by a stranger. Yes, those parents were insulted at first by the remark, but it turned out to be on target, and the parents did not know.

So is butting in okay? The thought of some other parent telling the doctors or nurses where my son resides anything about his care makes me crazy. Maybe it’s just me.

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