O Brave New World

O Brave New World

This is scary. Some excerpts: Confessions of a Genetic Outlaw.

From time to time, we are all confronted with the disconnect between how we see ourselves and how others see us. I’ve always seen myself as a responsible, law-abiding citizen. I recycle, I vote, I don’t drive a Hummer. But I’ve come to realize that many in the scientific and medical community view me as grossly irresponsible. Indeed, in the words of Bob Edwards, the scientist who facilitated the birth of England’s first test-tube baby, I am a “sinner.” A recent book even branded me a “genetic outlaw.” My transgression? I am one of the dwindling number of women who receive a prenatal diagnosis of Down syndrome and choose not to terminate our pregnancies.

Interesting how religious language is being usurped here. This is the new religion of Social Darwinism or as JPII put it, the “Culture of Death”.

A few years ago, author Christine Rosen wrote, “Those who oppose discarding unfit embryos or aborting unfit fetuses will soon become�perhaps already are�a dissident culture, tolerated at best, but more likely heavily regulated by a society that increasingly expects only healthy children to be born.”

My sister-in-law has already encountered this hostility when she declined to have genetic testing done. I’ve encountered the pressure to conform to society’s standards of controlling reproduction at the hospital where only days after giving birth I was asked about birth control and my ob’s office where the walls are covered with adds for “the pill” and when I told them I was using NFP I was told how hard it would be. I feel like an outlaw too.

Scientists are beginning to tell me precisely how much dissident acts like not aborting my son cost society. A study published in 2000 in the American Journal of Medical Genetics concluded that the average lifetime cost of each “new case” of Down syndrome is $451,000.

Because you can measure the worth of a human life in dollars and cents.

Perhaps if we honestly confront this disconnect, we could start providing some more informed support to those loving and caring parents who are making difficult decisions in the offices of those conscientious medical professionals. We might tell them that studies show that people living with disabilities judge the quality of their own lives much higher than others expect. We might share with them stories of the incredible grace, joy, and happiness that many parents of children with disabilities experience. And when we hear about parents driven to despair by the difficulties of caring for a child with a disability, we might start asking ourselves how many of those difficulties stem from the erosion of a societal consensus about our responsibility to care for the most vulnerable segments of our society, rather than from the disability itself.

I would not want scientists to stop delving into the mysteries and wonders of the human genome. I am glad that I knew my son had Down syndrome before he was born. If one of these scientists found a “cure” for my son’s Down syndrome, I almost certainly would give it to him. But I will admit that I would pause beforehand. I would think hard about this real-life conversation between a teenager with Down syndrome and her mother. The daughter asked her mother whether she would still have Down syndrome when the two were together in heaven someday. The mother, taken by surprise, responded that she thought probably not. To which her daughter responded, “But how will you know who I am, then?” And I would also think hard about whether the world would really be a better place without my son’s soft, gentle, deep, almond-shaped eyes.

[hat tip to Contemplation of Moral Theology

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  • My mother used to say that when she was doing the 3 a.m. thing she would think of the monks who were getting up and praying at that hour and join herself to them.  I remember also saying once about someone I was annoyed at (this was long before I was a mother) that they should be sentenced to diaper changing.  She looked at me and said, “They aren’t worthy.  To take a child with a problem and fix it and then play with the happy child and coo, etc.  Only the best should be allowed to do that.”  She put herself through college and graduated from the University of Wisconsin IN 1941.  She married my father and had nine children and one conversion (she was a little pagan).  She always said that mothering was the hardest intellectual work she ever did.  She consciously thought about how to solve problems, an idea that served me well always with my kids but especially with my sick son.  Children are exhausting but NOT boring.  They grow so quickly, change so much, imitate their mothers and fathers so individually. 

    I guess what really killed me about the article was that this woman thought that her Clothes were more important than her kid. 

  • I had an article I keep forgetting to post on motherhood and monasticism… thanks for reminding me. I’ll try to get it up this afternoon.

    I definitely agree with your mother that they are not worthy. What a wise woman. That is indeed when I get the best smiles, the most attention and the longest strings of baby talk.

    I’m sitting here feeding her and she’s sucking so contentedly right now, her mouth working and her eyes roving around the room, taking everything in. Dom comes in and looks down at her and says, that must be one of the five best places to be in the world. No, maybe the best: sucking contentedly at your mother’s breast.

    And indeed God uses that as a metaphor for heaven. It was in today’s morning office:

    “Oh, that you may suck fully
    of the milk of her comfort,
    that you may nurse with delight
    at her abundant breasts!

    As nurslings you shall be carried in her arms,
    and fondled in her lap;
    as a mother comforts her son,
    so will I comfort you;
    in Jerusalem you shall find your comfort.”

    (Isaiah 66)

    The heavenly city is a mother; heaven is the experience of being a baby in arms. How great God is to us mothers, to allow us to be the image of the Church, the image of his Bride, the image of heaven itself!

    Indeed I feel sorry for that mother and for any mother who is blind to the great gift she has been given.

    I also try to pray at those late/night early morning feedings. I try to keep my Liturgy of the Hours volume by the rocker and to let the rhythm of feedings be like the rhythm of the monastery. The modern world tells us we should be waiting breathlessly for that day when the baby will sleep through the night. We see these wakings as a curse. But really, isn’t it a calling? Like the calling of Samuel. If we reply, “Here I am Lord,” he will speak to us in the silence of the night and fill us with many graces.