Quality of Life Arguments

When do you let the bough break?

When do you let the bough break?

You have a child with severe disabilities which will someday prove fatal, how much intervention would you accept, or push for?


Various ideas about not wanting to live like that, about natural death, about quality of life, about suffering, and the usual generally expressed.

Random thoughts pulled from another discussion, a mess of stream of consciousness, really, not a cohesive essay. Just thoughts:

It depends on the intervention and the situation.

Natural death to me does not mean allowing a child, or anybody, to starve to death or be dehydrated to death, these are in fact, particularly vicious forms of murder, so I would have those things whatever the delivery system. We know that people do die on their own even while receiving nutrition and water via tubes, so the tubes delivering nutrition and hydration do not prevent natural death. They merely prevent the torture of being starved and dehydrated.

Suffering?  It depends on what we mean.  Agony? Pride suffering because intimate needs such as toileting, bathing, etc cannot be taken care of without third party involvement? Discomfort?  Being too dependent?

I don’t think avoiding suffering for the sake of avoiding suffering is really biblical. We judge what is good by what we like, not by God’s standards. While I would not choose suffering merely for the sake of suffering, choosing death over extreme inconvenience also doesn’t sit well with me. If you knew your child was going to die a horrid, excruciating, death, would you choose for him to avoid it and die peacefully in his sleep as a baby? That is not the choice God made.   Granted, we are not God.  But then, we are not God.

I have a child who cannot speak and her communication is around the level of a one year old and while she’s not paralyzed, she’s also not toilet trained and she doesn’t dress herself except with intense supervision and oversight and a bit of help and she does have a number of physical limitations. She’s 29. She is not suffering. I have had more people than I can count tell me how sorry they are for her, which makes me furious- they aren’t even looking at her when they think that. She does not need their pity, she doesn’t care about it. She’s not miserable. She likes her life just fine- they are imposing their thoughts and feelings onto her.

I would hate to be a two year old again knowing what I know now, but two year olds do not know what we know now, so they can handle it. She does not know what you know, she doesn’t miss what she never had, she doesn’t understand your value system, she doesn’t share it. She just is. She laughs, she hugs, she has things she likes and doesn’t like, anybody feeling sorry for her doesn’t know what they are talking about.

I have also heard arguments about ‘I wouldn’t want to live like that.” I hate those arguments. I am sorry, but they are very personal to me. This is my daughter. Of course nobody *wants* to or would choose to be in her situation, but she did not choose it, either, and she is not you. She seems quite happy with her life to me. If you were in her situation, you would not be thinking like you are now.
She is not miserable because she does not know what you know- and that is not a horrible thing.

And when people say I wouldn’t want to live like that, they do not know it, but they are revealing how very demeaning and disparaging they really feel in their heart of hearts about people like her and about her value as a human being. To my daughter and her mother, they are saying, really, “If I had to live like you, I’d rather kill myself.” And that’s a very ugly thing to say and not at all something with the mind and heart of Christ. I know they haven’t thought it through and don’t realize it and would be horrified if they recognized it. But that doesn’t change the fact that it shows the low value even Christians place on the seriously disabled. Christ had the humility to become a human being and leave Heaven and become one of us- we are so far beneath Him we can’t even imagine. And yet we do not have the humility to even imagine being willing to live our lives as a fellow human being, but with extreme disabilities.  He became one of us so He could die for us, and meanwhile we tell people all the time, without even blinking or flinching, that we would rather die before we would become one of them.

I would suggest rethinking our opinion of suffering in general. Are we talking extreme pain and unbearable physical agony, or major inconvenience and embarrassment, and do we really have a deeply biblical understanding of the word suffering and what it means and all it entails?

And I’d like to share these words from a man who is nearly entirely paralyzed (he can move his head some), in a wheelchair, dependent on others for almost everything, and he has been from birth. Christopher Nolan’s disabilities are so severe he communicates only via keyboard.

You need to really focus on what he says, because he’s Irish, poetic, and he recreates language in a beautifully poetic way, but it requires the reader to really pay attention. He wrote this in the late seventies or early eighties, so a couple of the words are not what we would use in the States and definitely not today. Also in the book from which I am quoting, he always refers to himself in the third person:

“A brain-damaged baby cannot ponder why a mother cannot communicate with it, and unless it gains parental love and stimulation it stymies, and thus retardation fulsomely establishes its soul-destroying seabed. Conscious of the breathtaking sacrifice involved in what his family did for him, yet he detected where destiny beckoned. The future for babies like him never looked more promising, but now society frowned upon giving spastic babies a right to life. Now they threatened to abort babies like him, to detect in advance their handicapped state, to burrow through the womb and label them for death, to baffle their mothers with fear for their coming, and yet, the spastic baby would ever be the soul which would never kill, maim, creed falsehood or hate brotherhood. Why then does society fear the crippled child…and why does it hail the able-bodied child and crow over what may in time become a potential executioner?”

Elsewhere in his writings young Christopher marvels at the age he lives in, recognizing that a hundred years ago a child like him would have been trapped in himself, unable to communicate beyond a rudimentary level with even the most doting of parents. He would scarcely have survived his childhood, and he certainly wouldn’t have published a book, spent any time in the public eye, or been given national awards. The western cultural attitude towards disability is deeply, seriously disturbing, especially given the technological advances that give the disabled lives they didn’t even survive to dream about in previous centuries.


More than abortion, I think the broader take away point from Nolan’s remarks is that in this day and era children with all kinds of disabilities have a far better quality of life and far better options and more hope for the future than any other era- and yet, we remain anxious to let them die, whether through abortion, or through withholding treatment after they are born (I know of two stories of disabled children allowed to starve to death by witholding a simple and common surgery. )

We are so good at self-deception (Jeremiah knew the heart is deceitful above all things, and we are not at all immune to that).  We mask the real motives even to ourselves, by certain phrasing.  I think it feels better to talk about ‘intervening’ to prolong life as an artificial, unnecessary thing, but the reality we take it for granted with ‘normal’ people is that we intervene to prolong life. We take steps to prolong our own lives all day and every day. We eat, drink, wear seatbelts, take medicine when we need, wear protective gear for riding bikes or horse riding, protect ourselves and our children from things we are allergic to, carry epipens if we have peanut allergies, and so on. These are interventions and their purpose is to prolong life. Antibiotics artificially prolong life. Asthma medicine and breathing treatments and insulin also do the same. We don’t even call those things interventions- because we use them all the time. But they are, and so we are fine with interventions, until we are discussing somebody who is disabled. So it’s not really just about intervening.

It’s not invalid to discuss how far do we go with those interventions and what kinds of interventions we mean. Obviously, some are far more drastic than others.   And what kind of time frame are we discussing would be a natural influence on our decisions: would it prolong a life a day, a week, a month, a year, two years, five years? And while a day seems unnecessary, not to prolong a life with an intervention that might give an extra five years seems awfully like murder to me, if the basis for saying now is simply that the child is disabled.
If we would go X far for a child without disabilities, it bothers me that we even have to ask when we are discussing a child with disabilities. And our standards, again, have less to do with conclusions reached from studying what the Bible says about suffering, and more to do with personal preferences and comforts and nebulous things like ‘well, she’d be better off in Heaven.” Yes, undeniable. And so would you, so would I, and so would our Cherub. And while the difference between my Cherub and myself here on earth seems a vast chasm; compared to Heaven’s standards, it’s just not so much as a sliver. So,  if simply the fact that one would be better off in Heaven settles the issue, we should all be dead already.

There are other questions I rarely see being asked at all, and they matter more: Has this human being made in the image of God truly *nothing* to do and *nothing* to give here on earth? Is there truly *no* hope of any sort for the future, is this life without value here on earth? Is this human image-bearer of God really at the last end of the journey and without anything of value to offer or do here on earth? Has this person completed the work God designed for them to complete?

Those are the kinds of questions that we should be asking.

Christopher Nolan, quoted above has no hope of ever leaving his wheelchair, which he cannot get into or out of without help- pretty much complete help. He doesn’t speak. He communicated, at the time he wrote the book, with a stick strapped to his head and he poked the keys, with help from his mother balancing his shaking head for him. (That said, he also did not require any extraordinary intervention just to keep him breathing and his organs functioning.) His mind was untouched, and he could type with a stick on his head and he created something of incredible beauty and richness. But most people think somebody like him would be better off dead and would deny him life saving intervention because he is trapped in a wheelchair, essentially paralyzed and unable to communicate without technological assistance.

Do we phrase our questions so that our focus is our child as a person, an image bearer,  glorifying God, or is the real frame work for our decision our preferences and what we are comfortable with?

Updated: related: “The death of a terminally ill seventeen-year-old boy made headlines recently, as Belgium’s first case of child euthanasia. I don’t understand the sudden fuss. The Netherlands has long allowed minors to request and receive euthanasia: Dutch children down to age sixteen can receive euthanasia without their parents’ consent, and children can be killed by doctors with parental consent starting at age twelve.

Perhaps Belgium’s euthanasia law has received this recent media attention because it has no age limits, instead requiring that a minor demonstrate a capacity to make autonomous decisions before receiving assisted suicide.

Think about this: Children who can’t enter into legal contracts, get tattooed, or be licensed to drive a car may request—and receive—death.

The healthcare system doesn’t dole out death only to teens and preteens. In the Netherlands, doctors commit infanticide against babies born with serious disabilities or terminal illnesses with impunity, even though the practice remains technically illegal. Indeed, doctors at the Groningen University Medical Center felt so safe committing infanticide that they published the Groningen Protocol, a bureaucratic checklist to help determine whether a baby is killable.”


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Political Games

There are things I don’t know that I agree with her, but this is the kind of government we have had far long than he realizes:

“The filibuster also has a corrupting effect on the party that never gets to sixty Senate votes. It allows members of that party to posture for major policy changes while knowing the other party will block them. Hillary Clinton was recently revealed to have said that she believed politicians need a private and a public face. The filibuster likewise allows members of Congress to be two-faced. They can make big promises to activist groups and never confront the tradeoffs that come from major legal changes—and then the politicians can go back to those same activist groups and point to the minority party as the reason nothing happened. Well, if only you worked extra hard and gave us bigger donations, then we could have a real majority.

This turns politics into a joke. It is difficult enough for one party to get control of the Senate, the House of Representatives, and the presidency simultaneously. Politicians are telling voters that they must wait on the next once-in-a-generation event before implementing their promised agenda of repealing Obamacare or restricting late-term abortion, or passing improved internal immigration enforcement. You just better hope that the other party is in office when that event happens—because otherwise, you are going to have to wait for another generation, or two, or whatever.

…But maybe the most corrosive thing is the feeling we have that some of the people who are nominally on our side like it this way. They get to posture, collect votes and donations, stay in office, and let unelected elements of the federal government impose their preferred policies.”

Robert Heinlein wrote about this in the forties in his novella Magic, Inc (once more in print and also on Kindle!  However, the mass market paperback is only a penny plus shipping from several sources).  I blogged about it at length here.

In one scene, the protagonist, needing to kill time while in D.C. goes to watch a session of the sausage being made.

The Assembly is discussing a resolution to censure the tar and feathering of some agricultural workers the previous month. He’s told it won’t take long because the people proposing the resolution don’t really want it passed, but for various reasons, they need the resolution for their own political lubricant.

So what happened is every member present gets up and speaks strongly in favor of the resolution, making quotable remarks so they can go home and tell their voters what they said and did, and then somebody from the opposition helpfully suggests tabling this resolution for further discussion, the motion is carried by voice vote- so there will be no record that every single person who spoke so stoutly in favor of the resolution also voted for tabling the discussion, so of course, it passes.  Remember, this was a story from the 1940s.  It’s what happens in politics today as well.

Next is a discussion of a proposed treaty with the gnomes for extracting the natural gas in their lands. One representative stands and is all for it. Eventually, another stands and is all against it. He has no particular interest in oil, but several of his constituents have business interests with a different oil company.

Then there’s a bill to outlaw every sort of magic- the bill’s sponsor speaks at length about why this should be done, then, without further discussion, the bill was voted on, and passed unanimously. This puzzles our protagonist greatly a more experienced and politically savvy friend explains that the sponsor needs to introduce the bill so he can use it to show his constituents how hard he’s working for them, but nobody wants it to pass, including him.  So his follow cronies in office, of all political stripes, has agreed to let him go ahead and introduce his bill for extra credit at home, because they all know the bill is now going to the committee where it will die a planned and very quietly, ignomious death. Sadly, I think this explains a number of pro-life bills and subsequent defeats.

Lobbyists in this story are the third branch of government, and they are mostly mandrakes, fake people, vegetables which move and imitate people, which explains quite a bit.

When government is this phony and this much opposed to the people and hand in glove with its fellow cronies in office, sooner or later we get somebody like Trump, who looks and talks enough like an outsider, who chuffs those in power who have been thumbing their noses at us.  Those in power fight back in the usual way, only their weapons are bent and tarnished already because we have known for decades that they have been doing whatever it is they find to accuse him of, and because Trump is not popular because he’s Trump, but because he’s a battering ram.  The more those in power hate him, the more valuable a battering ram he appears to be.  The more they accuse him, the less people who want a battering ram care.  \

And seriously, these people who want to flick our outrage on and off like a switch on a flashlight they aim where they choose?  They are the same people who gave the womanizing John F. Kennedy a free pass for years, these are the people who laughed at and scorned decency when Dan Quayle expressed concern over normalizing choosing to have a family without a father (‘it’s only fiction’ but catch them making that argument about any fiction which does not toe the SJW line), the people who deliberately lied and misled the public, destroying a candidate for quoting a teacher on the spelling of the word potatoes.  These are the people who worked hard deliberately covering up the credible accusations of rape and assault against Bill Clinton as well as protecting him during the known adulterous affair in the White House with an intern so much his junior she was very nearly young enough to be his daughter- a clear case of abuse of power and exploitation.  Nor were they much interested in investigating his close ties and many jaunts by jet to convicted pedophile Epstein’s orgy island for sexual escapades.  These people who insist everybody should be horrified by Trump are the same the people who elected womanizing, waitress groping Edward Kennedy and protected his job, the people who protect law-makers who imagine too many people can make an island tip, the people who think Nancy Pelosi is intelligent (or want us to think so), the people who protected John Edwards while he was cheating on his dying wife, and the same people who have protected and defended child rapist Roman Polanski for decades- it’s not that I think what Trump did is okay, it’s that I know they wouldn’t care at all if he wasn’t beating Hillary Clinton in the polls.

Trump supporters do not care that he is not a White Knight figure.  That’s not what they want.  They know a real white knight will be absolutely trashed and destroyed by the press and the left.  A battering ram is not chosen for great optics and moral values. It is chosen for hardness and strength.

Trump is what happens in a democracy when the republic was thrown aside decades ago and those in power have been holding hands with each other and the press and Hollywood ever more tightly-   I mean, did you see the pro Hillary ad put together by the group of Hollywood blow-hards?  They talk about ‘rewarding’ us by showing us the unwilling naked figure of a male actor, crudely promising a full view of his genitalia, and I’m supposed to pretend they really take issue with Trump’s comments?  They don’t care.  They didn’t care when he said them, probably because he was a democrat then.


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2, 4, 6, 8: Can You Say Procrastinate?


This is also from the book The Perfect Score Project, and of course, it’s about studying for the SAT. But really, it applies to so much, at least so much of my own life. I hate admitting that.

Often we don’t call it procrastinating, and we certainly don’t realize we are doing it because we are nervous or feeling anxious. We call it getting ready, clearing the calendar, clearing space around us, and other euphemisms for putting off what we need to do.

We may do productive things, but if they are not the things we are supposed to be doing, if we doing them to put off doing what we need to be doing, then we are procrastinating.

Debbie Stier (author of The Perfect Score Project) says Psychologist Dr. Bernstein wrote a book called Test Success, where he explained these mechanisms and he says, “to avoid the pain of unpleasant tasks, but procrastination causes even more stress and poor performance to boot.”

Once we no longer have those excuses, we may suddenly find ourselves exhausted, wiped out, feeling like we’re recovering from mononucleosis. These symptoms, Stier says that Bernstein says, are symptoms of anxiety, and should be coped with accordingly.

The next step is my favourite, because then you decide to settle down and work. But first, you need the books, at least, you do if you are like Debbie Stier and me. Because, she says:

“I’m a booknut; I shop for books the way some women shop for shoes. No matter what the problem, I’m always sure there’s a book (or, more accurately, many books) that will tell me how to solve it, even if I don’t have time to read them all. I’m comforted by their presence, and I like knowing that they’re there…. just in case. So I had built myself a cozy nest on the couch with all of my SAT books and office supplies ( I love office supplies), colored pens and stickies, highlighters and freshly sharpened No. 2 pencils, and when my nest looked like it was strong enough to support me in this secret cram session, I nestled in, ready to incubate for a few weeks before the test……”

and then she started ‘richoeting from book to book….’ this willy nilly test prep is bad. You grow frenzied, and confused.

Ms. Stier coped by leaving her nest and heading off and signing up for a local yoga class. I crochet. I would take a picture of my current nest, but my tranparency only goes so far, you know?  It’s kind of a mess, as am I.

Here’s the other thing I do- I get fed up with my nest and decide I have to clean it up and put it all away. Only while I am putting away my books and office supplies and snacks and crochet I am stumbling over new ideas for books to read and projects to distract myself with I mean make, and as fast as I am putting away stuff I am collecting new stuff, like some packrat building a new protective nest, which is kind of what I do.

Posted in housewifery, moralizing, philosophizing | Tagged | 4 Responses

Two of my new crocheted mushrooms




I made these for a friend and I already gave them to her.  The bottom one looks pretty pathetic underneath the cap, but I’m kind of happy with it otherwise.

I didn’t have a pattern.  Essentially, I just started with the basis for an amigurumi circle or ball, and stopped when I felt like the mushroom cap was kind of where it wanted to be.  The stem is just the round, six stitches circle of the magic circle, and I kept crocheting all the down until the stem felt like the right length.  I then sewed the stem to the cap.

I closed the circle for the top one mushroom cap, and I did not do that for the second one.

If I had taken the time to learn French knots, that would have been better, but I just have great white stitches on the underbelly of the second mushroom.

I now take my crocheting to church and Bible study and anywhere I am expected to sit still without a book or a computer in my hands.  I am wishing I had made myself learn how years ago, and that I had had the courage to follow up and take even my ugly lopsided dishcloths to church for the last nearly 10 years I’ve been making ugly lopsided dish cloths.

The reason I didn’t?  The wicked sin of distracting others.  I suspect this might have something to do with the particular religious corner in which I grew up, but I imbibed with my mother’s purchased formula that I was not to distract people in the pews.  They were there to worship, and I should never, ever divert them from this purpose by being a distraction.  I still hear this or versions of it from time to time, about all kinds of things.  Now, I do strongly believe that it’s really selfish to allow your family’s goings on to drown out the songs and prayers and sermons so nobody within three pews of you can hear.  I do grow tired of parents making excuses for illmannered and undisciplined kids- kids without ‘special’ issues and who are not having a bad day, but are making everybody around them have a bad year, you know?  So I am not saying anything goes.  However….

I am a big fan of grown ups being grown up. If I am distracted by somebody else (and so long as it’s not that they are being so frivolously noisy I cannot hear),  I figure that is my problem. I am not a fan of grown ups blaming others for their own inability to focus for five minutes.  So I’m crocheting in church and finding much rest and comfort in the repetitive motion.  And so far as I know, nobody cares.



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World News for News Notebooks

Thailand’s king dies

Moscow has ordered overseas government officials to bring their families home, prompting fears of war, also Moscow claims other reasons.

See also: “…a report in Russian website Znak published Tuesday, according to which Russian state officials and government workers were told to bring back their children studying abroad immediately, even if means cutting their education short and not waiting until the end of the school year, and re-enroll them in Russian schools, with some concern. The article adds that if the parents of these same officials also live abroad “for some reason” , and have not lost their Russian citizenship, should also be returned to the motherland. Znak cited five administration officials as the source of the report.

The “recommendation” applies to all: from the administration staff, to regional administratiors, to lawmakers of all levels. Employees of public corporations are also subject to the ordinance. One of the sources said that anyone who fails to act, will find such non-compliance to be a “complicating factor in the furtherance of their public sector career.” He added that he was aware of several such cases in recent months.

It appears that the underlying reason behind the command is that the Russian government is concerned about the optics of having children of the Russian political elite being educated abroad, while their parents appear on television talking about patriotism and being “surrounded by enemies.””

President Duterte, in the Philippines, calls for ban on all public smoking (also some news and photos of some of the results of his 100 days of cracking down on drug dealers, which has resulted in thousands of deaths).

More on the the drug-war in the Philippines and President Duterte’s reaction to Obama and the UN responses to that:

“MANILA (Reuters) – Philippine leader Rodrigo Duterte called U.S. President Barack Obama, the European Union and United Nations “fools” on Thursday, and warned they would end up humiliated and outsmarted if they accepted an invitation to investigate his war on drugs.

Duterte said he was open to an outside probe by Obama, his Secretary of State John Kerry, the EU and the U.N. Commission on Human Rights into alleged extrajudicial killings, but on the condition that after he was questioned, he had the right to be heard.

“I’ll play with you. I’m very sure they cannot be brighter than me. I will ask five questions that will humiliate you,” Duterte said. “Watch out for that, it will be a spectacle.”

Duterte’s remarks came during a televised speech to hundreds of the country’s business elite, during which he said it was necessary to cleanse the streets of drug pushers and rescue the next generation of Filipinos from the scourge of narcotics.

Duterte, 71, won the hearts of millions of Filipinos with his outrageous, at times comical speeches and man-of-the-people style in the run-up to a May election. He won by a huge margin after campaigning almost entirely on promises to wipe out drugs and crime.

Nearly 2,300 people have died in the war on drugs since the campaign started on June 30, according to police, of which 1,566 were drug suspects killed in police operations.”

Smuggled video from Venezuela shows prisoners starving to death because the socialist policies in the country have left the government with no money to feed prisoners.

The Schindler’s list factory dude was a hero who saved many Jewish people from Nazi death camps.  He was also, it seems, a hard-drinking, womanizing gambler and local crook.  People are just not as simple as we wish.

More than 45,000 Canadians left the country for more timely health care last year.

In the ‘No-go’ zone of Paris, 15 ‘youths’ tried to burn alive two police officers as they sat in their cars.

France creates a National Guard to combat terrorism threats.

France’s Socialist President Hollande privately has admitted France has a problem with Islam and that he expects the symbol of France to soon be a woman in a burka.

In Germany, a 25 year old refugee felt himself entitled to a free feel of a teen-aged girl.  She slapped his face.  He reported her to the police, feeling wronged.

Also in Germany– “a new welfare plan that will make it harder for EU migrants to claim unemployment benefits in Germany. Opposition parties call it a betrayal of the European Union’s ideals.”  however, there are other benefits still available to EU migrants.

Hungary places further restrictions on receiving new immigrants through the EU.

In Yemen, the U.S. deals out missile strikes.


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