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December 7 - December 13, 2019
Having anticipated the onward march of our selfish genes, many of us are unprepared for children who present unfamiliar needs.
Parenthood abruptly catapults us into a permanent relationship with a stranger, and the more alien the stranger, the stronger the whiff of negativity.
we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do. Loving our own children is an exercise for the imagination.
vertical identities. Attributes and values are passed down from parent to child across the generations not only through strands of DNA, but also through shared cultural norms.
an inherent or acquired trait that is foreign to his or her parents and must therefore acquire identity from a peer group. This is a horizontal identity.
The exceptional is ubiquitous; to be entirely typical is the rare and lonely state.
Vertical identities are usually respected as identities; horizontal ones are often treated as flaws.
Many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine shortchanges identity. Both are diminished by this narrowness.
The problem is to change how we assess the value of individuals and of lives, to reach for a more ecumenical take on healthy. Ludwig Wittgenstein said, “All I know is what I have words for.” The absence of words is the absence of intimacy; these experiences are starved for language.
Having exceptional children exaggerates parental tendencies; those who would be bad parents become awful parents, but those who would be good parents often become extraordinary.
To look deep into your child’s eyes and see in him both yourself and something utterly strange, and then to develop a zealous attachment to every aspect of him, is to achieve parenthood’s self-regarding, yet unselfish, abandon.
The parental predisposition to love prevails in the most harrowing of circumstances. There
Although I did not always feel approved of, I always felt acknowledged and was given the latitude of my eccentricity.
I was reminded of how isolating an exceptional identity can be unless we resolve it into horizontal solidarity.
Neutrality, which appears to lie halfway between shame and rejoicing, is in fact the endgame, reached only when activism becomes unnecessary.
It is a surprise to me to like myself; among all the elaborate possibilities I contemplated for my future, that never figured. My hard-won contentment reflects the simple truth that inner peace often hinges on outer peace.
In the gnostic gospel of St. Thomas, Jesus says, “If you bring forth what is within you, what is within you will save you. If you do not bring forth what is with...
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modernity comforts us with trivial uniformities even as it allows us to become more far-flung in our desires and our ways of realizing them.
There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted—even in imagining another life.
The attribution of responsibility to parents is often a function of ignorance, but it also reflects our anxious belief that we control our own destinies.
This intelligent woman had so assimilated a narrative of self-blame that she didn’t know that it had come out of her imagination.
“I write now what 15 years past I would still not have thought possible to write: that if today I were given the choice to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands—because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.”
“This thought runs like a bright golden thread through the dark tapestry of our sorrow. We learn so much from our children—in patience, in humility, in gratitude for other blessings we had accepted before as a matter of course; so much in tolerance; so much in faith—believing and trusting where we cannot see; so much in compassion for our fellow man; and yes, even so much in wisdom about the eternal values in life.”
“You gotta take your mess and find yourself a message!” While
Ability is a tyranny of the majority.
Repairing the body and repairing entrenched social prejudice are objectives that dance a troubling waltz; either fix can have unwelcome consequences.
We are all differently abled from one another, and context—which is socially constructed—often decides what will be protected and indulged.
The wish to fix people reflects pessimism about their condition and optimism about the method of repair.
Autobiography of a Face,
Recent academic work suggests that people who know their condition to be irreversible are happier than those who believe their condition may be ameliorated. In such cases, ironically, hope may be the cornerstone of misery.
It is always both essential and impossible to tease apart the difference between the parents’ wanting to spare the child suffering and the parents’ wanting to spare themselves suffering. It is not pleasant to be suspended between two ways of being;
Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources.
“If something or someone doesn’t work, it’s in a state of grace, progress, and evolution. It will attract love and empathy. If it does work, it has merely completed its job and is probably dead.”
Those who believe their suffering has been valuable love more readily than those who see no meaning in their pain. Suffering does not necessarily imply love, but love implies suffering,
Life is enriched by difficulty; love is made more acute when it requires exertion.
The raw grit of anguish will never be in short supply. There is enough of it in the happiest life to serve these instructive purposes and there always will be.
Intersectionality is the theory that various kinds of oppression feed one another—that you cannot, for example, eliminate sexism without addressing racism.
But just as belief can result in action, action can result in belief.
A Buddhist scholar once explained to me that most Westerners mistakenly think that nirvana is what you arrive at when your suffering is over and only an eternity of happiness stretches ahead. But such bliss would always be shadowed by the sorrow of the past and would therefore be imperfect. Nirvana occurs when you not only look forward to rapture, but also gaze back into the times of anguish and find in them the seeds of your joy. You may not have felt that happiness at the time, but in retrospect it is incontrovertible.
A Child Sacrificed to the Deaf Culture,
“Compassion is the ability to care unconditionally for another person, not based on fulfilling your expectations,”
“When an old person dies, it’s a library burning down.”
HBO, Dwarfs: Not a Fairy Tale,
the family I’ve created has pulled me away from the one that created me.”
“Welcome to Holland,” a modern fable written by Emily Perl Kingsley in 1987.
“I was so sure I was the parent who was not going to be able to deal with a child who was in any way different,” she said. “I was just relieved to love her. She was very lovable. All my friends had these children they thought were perfect, and then they’ve had to come to terms with their children’s limitations and problems. I had this baby everyone thought was a disaster, and my journey has been to find all the things that are amazing about her. I started off knowing she was flawed, and all the surprises since then have been good ones.
the only normality is nonnormality.
“I don’t have a fear that everyone’s going to find out I don’t know what I’m doing as a mother because I’ve already admitted that. The question is how you educate yourself. Sometimes I think I’m a great mother. Sometimes I think I suck. I’ve never once in a million years said that I know what I’m doing being somebody’s mother. I barely know what I’m doing being somebody’s wife.”
“Kids need to be in places where they feel successful, where they have peers,” Susan said. “Yes, they need role models, but they also need to be role models.”
happiness was a fluid concept

