Wednesday, June 17, 2009

2443 As it should be?

Wednesday, June 17, 2009

Katherine Hepburn: "Sometimes I wonder if men and women really suit each other. Perhaps they should live next door and just visit now and then."


I am having some time dissonance today. I will be joining The Man on Saturday. We'll have the afternoon free, and then the Shakespeare festival in the evening. I usually take stuff to the recycle center on Saturday, but, thinking ahead, I went to the recycle center this morning. The result is that I keep thinking today is Saturday, and I'm momentarily confused every time it proves not to be.


The Man has some definite ideas on what he wants as far as medical intervention is concerned. He has told me that if he should have a heart attack or stroke or whatever when he's with me, that I am not to attempt to "save him". He figures when it's time, it's time, and he wants no extraordinary effort. I think perhaps he has a fear of ending up hooked to machines, or bankrupting his family (or me) with medical costs, or ending up unable to work. Or, it could be just fatalism. When it's time, it's time.

It's not what I would choose for myself, but I told him ok, I would respect his wishes. No CPR, no aspirin, no immediate 911, no defibrillator.

My philosophy is different from his. Yes, I'll agree that when it's time, it's time. I helped Jay to stay alive so long because that's what he wanted and what I promised him, but when it was time, when all his organs shut down but he was still fighting, I told him it was time to let go. I had to. And he did.

To be absolutely honest, I'm not certain I could abide by the promise to The Man. I know what to do in various situations, and I'm afraid I would do it anyway, without thinking. I couldn't do otherwise.

My theory is that if it really was time, he'd have the heart attack or whatever in his car, or alone on a late night shift in his office, or in his sleep at home, not when he's with me. If he has it when he's with me, then obviously it's not time yet.

Like, it's a test.


I was thinking about that yesterday. I had picked up another tail end of yarn and followed it, and ended up reading a lot about a particular very rare condition caused by chromosome damage, an extra copy of a particular chromosome. (I won't give the name here because I don't want someone searching for information on the syndrome to find this, but the number thirteen is significant, and having three of them instead of the usual two is what causes the problem.)

With the extra copy, the fetus develops incorrectly. The skull either closes too quickly or doesn't close, the brain is malformed, the intestines are messed up, the feet are deformed, there may be parts of the eye that don't develop properly, and there are often extra non-functional digits on the hands and feet. There may also be cleft palate and heart and kidney defects.

The condition is often not detected until late in the pregnancy. If born alive, the child often does not live long.

In the worst cases, the child will be blind (if not from poorly developed eyes, then from the brain being unable to process visual information) and unable to speak (the speech centers in the brain don't develop). Most never learn to crawl, let alone walk. They never learn to swallow, apparently they don't have the reflex. They have to be fed through a tube in the abdomen. Eventually the malpositioned intestines twist and surgery is needed to reposition them. If they can hear, I don't know that they can process what they hear. They are profoundly retarded. They have seizures. They do not develop manual dexterity. Some children are better off than others, not having all the defects, but even in mild cases, it's severe. Really bad.

If they live past the first few days, their life is one infection after another, one surgery after another, and the surgeries don't improve or cure anything, they just keep them alive a little longer.

I read many stories of children living with the condition, and of their parents' battles to get proper care for the children. Almost universally, the doctors, having diagnosed the condition at birth, strongly advised the parents to allow the child to die. (The nurses were generally more supportive of the parent's decision, regardless of what it was.) Some parents take the doctor's advice, once they find out what the condition means. Others don't, and begin the round of corrective surgeries, tube feedings, 24 hour care, anti-convulsive medications, and on and on.

Of course all of the stories I read were authored by parents who chose the latter course, and many of them were very dismissive of and even angry at parents who allowed the child to die shortly after birth. They figured that God (or whomever, or whatever) gave them this child to care for, and they would, no matter what it took.

One woman was very indignant that someone had said to her, "You are forcing this child to live!"

I can understand that attitude. Sometimes you find parents of exceptional children who want to be congratulated for how selfless they are. And those are the ones who least respect people who decide otherwise.

My take on this issue is that yes, the baby was "given" the condition, and yes, these parents were "given" this baby, BUT if the intent was that the baby die, then it was given to parents who would allow it to die, and they would learn the lessons of that birth and death. If the "giver's" intent was that the baby live, it would be given to parents who would make a supreme effort to keep it alive, and the parents would learn the lessons of that effort. Either way, a divine lesson is to be taught, and the parents learn (or teach) that lesson, and it is exactly as it is meant to be.


...So, if The Man ever keels over in front of me, I will do what I will do, whatever that is, I don't know exactly and won't know unless it happens, but whatever I do, it will be the right thing, and the right lesson will be learned (or taught), either by me or by him, because he keeled over in front of me, not someone else, or somewhere where there was no help.

So there.

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