What’s Down Syndrome?

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I am running behind: World Down Syndrome Day was yesterday. In our house, though, every day is Down Syndrome day, so I am posting the video made by the Lejeune Foundation this year. We watched it together, the children and I. My daughter Anna, who has Down Syndrome, wasn’t as interested as I expected. My 8-year-old son, however, asked the $64,000 question: “what’s Down Syndrome?”

I’m not sure whether I answered his question perfectly. He doesn’t know anything about genetics, or chromosomes, or anything like that. I tried. But I don’t think it matters. He’ll grow up knowing what trisomy-21 looks like.

Family.

pain in childbearing, part 2

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That little verse from Genesis 3 sticks with me. I reflected some in my previous post about the pain of losing children, and of heartbreak in raising them. This week, we had some time with a psychologist who repeated (not in so many words) one of the key lessons I am learning in this great adventure of parenting: it’s not intuitive.

Bearing children may be a perfectly natural event. But raising them is an art. Doing what comes naturally, unless we are near-perfect in our virtue, isn’t usually a good idea when responding to the various provocations of our beloved (and utterly infuriating) offspring. Most parents come to realize this, so I am not saying anything new there. And I am not qualified to give child-raising advice. All I can say for certain is that losing your temper is always going to end badly, but keeping it perfectly is impossible, at least in my experience.

The counter-intuitiveness of parenting, though, has theological significance, I believe. Because having children is something good. It’s God’s plan. “Be fruitful and multiply,” God tells Adam and Eve. God repeats the instruction when Noah and his kin disembark from the ark. The propagation of the species matters to God. And the psalmist remarks that children are a blessing from God.

But it certainly doesn’t always feel like that. Of course there is joy as well, and the work of parenting is meaningful perhaps above all other work. Human beings are precious, and powerful creatures, capable of great things–some very good, and some very bad. Some days the responsibility seems overwhelming. And doing it properly just doesn’t come naturally. So it’s painful. It’s part of the discipline that yields the peaceful fruit of righteousness (Hebrews 12:11), or so I hope.

For the grace to get through it day by day, Deo gratias.

Monday of the third week of Lent

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“My father,” [Naaman’s servants] said, “if the prophet had told you to do something extraordinary, would you not have done it? All the more now, since he said to you, ‘Wash and be clean,’ should you do as he said.”  So Naaman went down, and plunged into the Jordan seven times at the word of the man of God. His flesh became again like the flesh of a little child, and he was clean.
A brother came to Scetis to visit Abba Moses and asked him “Father, give me a word.” The old man said to him “Go, sit in your cell, and your cell will teach you everything.”
*        *      *
It is the ordinary stuff of life that most escapes our sense of God’s presence: if it is an ordinary thing, God must not really be involved in it. The miraculous is extraordinary, we think. Miracles, like that which Naaman desired, look spectacular. The miracle he got, however, was no less miraculous for being ordinary.

Unfortunately, progress in Christian faith seems to require, as Naaman’s servants and the desert fathers and mothers knew, a steady diet of very ordinary disciplines. Ascetic superheroes get short schrift in the Sayings; Elisha sent Naaman to wash in the Jordan, and Abba Moses sent the brother to go and sit in his cell. Nothing fancy. 

Once upon a time, I used to try do do heroic things during Lent. Then I had children. Now I find that the most basic observance of Lent, according to what the Church teaches, can be a struggle. Is this it? I wonder. Is this really all I can do? And is that enough? 

We don’t get to choose how we suffer for the sake of the gospel. We don’t get to choose which things will form us in obedience and humility. If we did, well, it wouldn’t be obedience, would it? So I drag myself through this Lent, hoping I can make a good confession between now and Holy Week, at least. Somewhere in the dragging, the apparently meaningless and pointless suffering of a very low mood, God is at work. All is now chaos and darkness, and the swirling, struggling feeling inside must be the Spirit, stirring up the water, making ready in some mysterious way for that great command: fiat lux!

And there will be light. There will be light. Not because of anything I do or do not do, but because the One who commands all our obedience is faithful and strong and true: the light shines in the darkness, and the darkness cannot overcome it. 

In the meantime, I think I’ll look again at the inside of my cell, and see what it has to teach me.

Thinking about Genesis 3 & 4

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Over at thinking coram Deo, I reflected a bit on the first Mass reading, and beyond it. I reproduce it here, in case anyone’s interested.

Genesis 4: 1-8 (RSV)

Now Adam knew Eve his wife, and she conceived and bore Cain, saying, “I have gotten[a] a man with the help of the Lord.” 2 And again, she bore his brother Abel. Now Abel was a keeper of sheep, and Cain a tiller of the ground. 3 In the course of time Cain brought to the Lord an offering of the fruit of the ground, 4 and Abel brought of the firstlings of his flock and of their fat portions. And the Lord had regard for Abel and his offering, 5 but for Cain and his offering he had no regard. So Cain was very angry, and his countenance fell. 6 The Lord said to Cain, “Why are you angry, and why has your countenance fallen? 7 If you do well, will you not be accepted? And if you do not do well, sin is couching at the door; its desire is for you, but you must master it.”

8 Cain said to Abel his brother, “Let us go out to the field.”[b] And when they were in the field, Cain rose up against his brother Abel, and killed him.

*           *         *

This is going to be a bit wide of the mark, I fear–not really a commentary on the verses at hand. But the thing has been pressing on me for some time, and this passage from Genesis 4 (which continues for another 7 verses in the first reading for today) calls it immediately to mind. That is, we don’t usually interpret this tragic episode in relation to what precedes it in Genesis 3. Yes, it’s the beginning of sin, and it’s amazing how quickly a little stolen fruit leads to fratricide. But it also–I believe–should be read in light of Genesis 3: 16. 

To the woman he said,
“I will greatly multiply your pain in childbearing;
    in pain you shall bring forth children,
yet your desire shall be for your husband,
    and he shall rule over you.”

My thinking about this one verse began several years ago on Christmas Eve. I was listening to the Advent Lessons & Carols service broadcast from King’s College, Cambridge, and noticed that in the reading of Genesis 3, this verse was omitted. Maybe it was just a mistake on the part of the reader, though I doubt it. At the time, I wondered. Surely it can’t have been left out because it is Not Nice. Maybe it was something to do with the institution of patriarchy–maybe we don’t want to think about the imbalance of power that generally obtains in relationships between men and women (which seems to have been confirmed over the weekend, if what I’ve heard about the newly-released film is true). 

Whatever the reason for the elision of verse 16 that year, I am glad for it. Although I never did come up with a satisfactory guess about the rationale for leaving it out, I did begin to think in a new way about the first part of the curse–the business about childbearing. Yes, it hurts. I can testify to that, having had four children (even had one without the epidural). But I don’t think that’s what this part of the verse is about. In the first place, the emotional pain of  pregnancy loss seems to me to be greater than the physical pain of labor. And then there are the things that go wrong: congenital defects of the heart or other organs, genetic disorders, infant deaths. About pregnancy loss or the death of an infant, I have no first-hand experience. But I know what it’s like to have something big go wrong–or, better, to have something very small go awry (one little extra chromosome) with global effects. The pain of childbearing is increased in a fallen world: things go wrong. 

Not for a few years did I realize (probably only as my children grew) that there was still more pain to be had in the bearing of children. Not only do they give us pain as they come into the world, they continue to cause pain (as well as joy, of course) as they grow and change. Not all of the heartbreak involved in raising children is quite as dramatic as the story of Cain and Abel. But there it is. Genesis doesn’t say much about how Eve’s birth experience is. We do,  however, hear about this tragedy. Having two sons myself, I can’t imagine anything much worse than one of them murdering the other in cold blood. The pain of childbearing is increased in a fallen world: we go wrong, and badly wrong.

For a while, I wanted to write a book about the pain of childbearing, broadened to include stories of pregnancy loss and more. The trouble was that there wasn’t really an “up” side to it. I’m looking again at a verse that’s not particularly encouraging to begin with, and saying, but really, it’s much worse than that. Hardly the makings of a best-seller, there. 

As always, though, there is much more to it than this thin slice of the story tells us. There are small hints in Genesis 3 and 4 that God will make it right: “the Lord God made for Adam and for his wife garments of skin, and he clothed them” (3: 21). And Eve has another son, Seth, whom she regards as being given to her by God (4: 25), and the writer notes that “At that time [people] began to call on the name of the Lord” (4:26).  In the midst of the pain, it is difficult to see how even this (whatever particular this is so vexing or agonizing) cannot fall outside of the delightful arrangement that is the work of the Wisdom of God (Wisdom 8: 1). Yet there is nothing, not even this terrible outworking of the curse, that can escape the truth: “in Him all things hold together.” All things. Most days I fall very short of believing that. But that doesn’t mean it isn’t true. 

Deo gratias.

Monday of the sixth week in ordinary time

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Genesis 4: 1-8 (RSV)
Now Adam knew Eve his wife, and she conceived and bore Cain, saying, “I have gotten<span class="footnote" data-fn="#fen-RSV-81a" data-link="[a]” style=”box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;”>[a] a man with the help of the Lord.” 2 And again, she bore his brother Abel. Now Abel was a keeper of sheep, and Cain a tiller of the ground. 3 In the course of time Cain brought to the Lord an offering of the fruit of the ground, 4 and Abel brought of the firstlings of his flock and of their fat portions. And the Lord had regard for Abel and his offering, 5 but for Cain and his offering he had no regard. So Cain was very angry, and his countenance fell. 6 The Lord said to Cain, “Why are you angry, and why has your countenance fallen? 7 If you do well, will you not be accepted? And if you do not do well, sin is couching at the door; its desire is for you, but you must master it.”

8 Cain said to Abel his brother, “Let us go out to the field.”<span class="footnote" data-fn="#fen-RSV-88b" data-link="[b]” style=”box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;”>[b] And when they were in the field, Cain rose up against his brother Abel, and killed him.


*           *         *


This is going to be a bit wide of the mark, I fear–not really a commentary on the verses at hand. But the thing has been pressing one me for some time, and this passage from Genesis 4 (which continues for another 7 verses in the first reading for today) calls it immediately to mind. That is, we don’t usually interpret this tragic episode in relation to what precedes it in Genesis 3. Yes, it’s the beginning of sin, and it’s amazing how quickly a little stolen fruit leads to fratricide. But it also–I believe–should be read in light of Genesis 3: 16. 

To the woman he said,
“I will greatly multiply your pain in childbearing;
    in pain you shall bring forth children,
yet your desire shall be for your husband,
    and he shall rule over you.”

My thinking about this one verse began several years ago on Christmas Eve. I was listening to the Advent Lessons & Carols service broadcast from King’s College, Cambridge, and noticed that in the reading of Genesis 3, this verse was omitted. Maybe it was just a mistake on the part of the reader, though I doubt it. At the time, I wondered. Surely it can’t have been left out because it is Not Nice. Maybe it was something to do with the institution of patriarchy–maybe we don’t want to think about the imbalance of power that generally obtains in relationships between men and women (which seems to have been confirmed over the weekend, if what I’ve heard about the newly-released film is true). 

Whatever the reason for the elision of verse 16 that year, I am glad for it. Although I never did come up with a satisfactory guess about the rationale for leaving it out, I did begin to think in a new way about the first part of the curse–the business about childbearing. Yes, it hurts. I can testify to that, having had four children (even had one without the epidural). But I don’t think that’s what this part of the verse is about. In the first place, the emotional pain of  pregnancy loss seems to me to be greater than the physical pain of labor. And then there are the things that go wrong: congenital defects of the heart or other organs, genetic disorders, infant deaths. About pregnancy loss or the death of an infant, I have no first-hand experience. But I know what it’s like to have something big go wrong–or, better, to have something very small go awry (one little extra chromosome) with global effects. The pain of childbearing is increased in a fallen world: things go wrong. 

Not for a few years did I realize (probably only as my children grew) that there was still more pain to be had in the bearing of children. Not only do they give us pain as they come into the world, they continue to cause pain (as well as joy, of course) as they grow and change. Not all of the heartbreak involved in raising children is quite as dramatic as the story of Cain and Abel. But there it is. Genesis doesn’t say much about how Eve’s birth experience is. We do,  however, hear about this tragedy. Having two sons myself, I can’t imagine anything much worse than one of them murdering the other in cold blood. The pain of childbearing is increased in a fallen world: we go wrong, and badly wrong. 

For a while, I wanted to write a book about the pain of childbearing, broadened to include stories of pregnancy loss and more. The trouble was that there wasn’t really an “up” side to it. I’m looking again at a verse that’s not particularly encouraging to begin with, and saying, but really, it’s much worse than that. Hardly the makings of a best-seller, there. 

As always, though, there is much more to it than this thin slice of the story tells us. There are small hints in Genesis 3 and 4 that God will make it right: “the Lord God made for Adam and for his wife garments of skin, and he clothed them” (3: 21). And Eve has another son, Seth, whom she regards as being given to her by God (4: 25), and the writer notes that “At that time [people] began to call on the name of the Lord” (4:26).  In the midst of the pain, it is difficult to see how even this (whatever particular this is so vexing or agonizing) cannot fall outside of the delightful arrangement that is the work of the Wisdom of God (Wisdom 8: 1). Yet there is nothing, not even this terrible outworking of the curse, that can escape the truth: “in Him all things hold together.” All things. Most days I fall very short of believing that. But that doesn’t mean it isn’t true. 

Deo gratias.

the unfairness of it all

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Anyone who has children has heard “it’s not fair” countless times. I remember reading in one of those “how-to” parenting books that the sense of injustice develops early. I didn’t realize quite how long it lasts. Actually, I think it never really goes away. We just stop saying it out loud. Somewhere along the way, the message “stop whining” got through, and we fell silent. As for me, I internalized the response I always got when I complained about the unfairness of it all: “life’s not fair.”

Indeed not.

But what I have come to realize, perhaps quite late in the game (maybe everyone else already knows this…) is that it’s never exactly fair. I just don’t recognize the unfairness of it all quite so clearly when I am the beneficiary of the failure of perfect justice in the world. Life is not fair. It’s not fair that my daughter should have Down Syndrome. It’s not fair (on a far smaller scale) that my son should be color-blind. Things are just not fair. It is also, however, not fair that I should be born into privilege and others not. It’s not fair that my children have more than they need, while others lack the basic necessities of life. It’s not fair that my family and I are safe, and families in places near and far are in peril. On balance, the general unfairness of it all tends to be in my favor rather than not.

I want to impress upon my children this sense of unfairness, to help them to see the bigger picture. My mother meant well, I think. (Maybe she just wanted me to shut up, but I’ll go with the more charitable interpretation.) But her words only led me to believe that life was always going to be a struggle against the general unfairness of it all, on a very personal level. She never connected my sense of injustice in my own small world with the injustice I saw in the big, wide world. I remember distinctly having a conversation with her when I was maybe 7 or 8, about hunger in Africa. I wanted to send food. She said that it would never get to the people who needed it. I wanted to send money. She said the same thing would happen. I was at a loss. She said, “You know what you can do? You want to be a doctor when you grow up. You can go and help then.”

That response left me incredibly frustrated. I wanted to do something. The sense of injustice natural to children from an early age can certainly open onto bigger horizons. “Life’s not fair” is absolutely true. It’s also incredibly demoralizing. I’ve said it in exasperation to my son, and now think maybe I shouldn’t have. Because unfairness is not how it should be, nor how it has to be. Unfairness persists because we let it. Because I let it. “Life’s not fair” might well be a seed from which bitterness will grow, and insecurity, and greed, and a desire to protect what we have from the Great Unfairness that threatens us. It turns what can be a powerful force for good into an excuse for self-protection.

“It’s not fair,” you say? No, it’s not. What can we do to make it so? Let’s start now.

Common (intellectual) politeness

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The reality is that Lewis is never going to post to this blog. But part of the reason I created it was to talk about some of the theological topics that we have discussed (sometimes at great length and with considerable intensity) over the years. Theological methodology has been one of those broad areas of conversation. Within that more general subject is the question of one’s mode of engagement with sources in constructive theology. I can remember being asked in graduate school, when I dared to wonder about whether John Milbank could possibly have interpreted every single one of his interlocutors with historical accuracy, why it mattered, if the constructive proposal was good. Then, I was surprised by the question, and didn’t have a good answer. Of course it matters, I thought. But can I say WHY? I think my short answer to the question now would be that it’s a matter of common scholarly politeness, which is far more important than it seems. Lewis has rather more to say on the subject, and posted the following to Facebook:

There’s a symposium on Catherine Pickstock’s new book on one of those trendy theology websites. One of the respondents goes on at great lengths to say that her book is a) written in incredibly dense English; b) doesn’t engage with much of the scholarship on the topics she considers. Catherine’s response is basically “well, you are right, I am sort of going where Kierkegaard’s Climacus says I should… but he hardly writes in clear prose or packs himself out with footnotes.” She adds to this “especially when I disagree with all that stuff” (I should say her reviewer wants her to read some “process” stuff; and I agree with her when she says “ain’t wasting my time on that”). Now, I think Catherine is really smart and deeply insightful, but her reviewer has a point. I was just disappointed that he offered no articulation of WHY the things she doesn’t do matter. I am not going to post a comment to that website – it is way too trendy – but I can’t contain myself and will say that there are 5 reasons why Catherine’s reviewer is on the right track:

1) Two of these reasons are simple philosophical ones. striving for clarity in expression is always a good. I still remember Maurice Wiles explaining to me that if I wanted to do Patristics I had to write for those for whom English was a second language. This was a VERY thinly veiled criticism of something he read of mine. He was right. Some ideas certainly require very complex expression, but it is far fewer than most of us who write imagine! We should certainly be ready to see genuine insight in very complex writing, especially that of the genuine genius (and even in writing without footnotes!), but we should not go around imagining that we are in that category. It ain’t good for our clarity of thought.

2) Honing one’s ideas through careful exploration of those who have gone before us on the same tracks is always a good. Often before we do this we simply repeat and/or miss giving our own insights true precision. If everyone before us has read a text differently it is a good to justify our own reading against all those predecessors. This is not the same as simply engaging with existing scholarship; learning to discern what matters and what not is itself something honed through such engagement. (and in this particular case Catherine’s reviewer thinks we need always to interrogate “continental” philosophy with a good dose of “analytical” – I wouldn’t make such a blanket statement and that’s a different point from mine).

3) BUT, there are also 2 good theological reasons why that which Catherine does not do is important. The first is to do with our own attentiveness as Christian readers. Attentiveness is pretty close to being a virtue. And in Christian academic writing attentiveness is in part appropriately performed via care in expression, knowledge of scholarly traditions, and well-formed footnotes!

4) In the same vein, not only is it the case that we should worry about our own formation, but we should worry about ourselves as readers within a community. Especially in the case where we, as Christian writers engage those who are also Christian writers, attentiveness should surely be seen as a virtue for Christian academics.

5) The last reason is a more complex one. I think that serious engagement with modern historical consciousness in its many forms is necessary for Christian intellectuals (see my draft paper on academia.edu) and we are not here talking only about contingent academic performance, but also how to find modes of exploration and expression that reflect a new attention to the complexities of tradition, to the history through which God (in part) speaks.

I am not saying I am any good at this, but I do think this is what we should do and I do occasionally try to do this.

I won’t pretend to be able to sum that up. If I could, I wouldn’t have quoted the whole thing (which Lewis posted under the caveat: ‘my longest Facebook post EVER’). But I will go so far as to say that I think good manners count for a lot. Christian faithfulness, for academics, includes the kind of attention Lewis describes as “a virtue for Christian academics.” Whether an ‘official’ virtue or not, it exhibits patience, kindness, gentleness, and (a form of) self-control–gifts of the Spirit. What we say in print and from the lectern and how we interact with students and colleagues and interlocutors are not somehow separate from our spirituality or devotion. Maybe those folks we think undeserving of our attention, for whatever reason, are ‘the least of these.’ And we know how to behave toward them.

the interruptions

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It would be wrong to think that the interruptions have no bearing on what happens between them. The interruptions make the ‘between’ fruitful. I have, of course, heard the saying about the person trying to work and constantly being interrupted, only to find that the work was the interruptions. And that’s wise, as far as it goes. But somebody had to have a moment, between those interruptions, to think that, and to write it down.

That’s the purpose of my “between”: to stop long enough to think, and to write things down. I know without a doubt that the possibility of spiritual growth for me lies not in the quiet but in persevering despite the noise, confusion and vexations of daily life with children. Being with my children in all the occupations of our life together forces me to go slowly, to place someone else’s experience at the center of my attention. This does not come naturally to me. Not remotely.

So of course sometimes the vexations have the upper hand, and I am what CS Lewis (we’re listening to The Silver Chair now) might call “out of temper.” Fortunately there are small mercies–the children’s simple love, when it comes to the surface, a moment of quiet, a day or two on retreat (oh, heaven!), or an email from a friend (reminding me of God’s constant presence). And in conversation and in stillness, there’s time for a tiny bit of reflection. That’s what happens between the interruptions.

The relentless chaos of life with children and the priceless moments of quiet between their demands for attention form two parts of a whole. I can’t say I always value the chaotic side–hence calling it “the interruptions.” But the fact of the matter is that the ‘between’ would have little meaning without the work of parenting, which requires a form of attention that usually precludes reflection. If I am not fully present with the children, they know it. Something as simple as brushing my 3-year-old’s teeth requires my full attention. (Nursing a baby, especially one’s third or fourth, might just be the exception: I planned two book-length projects while nursing my third child.)

When I stop to think, or to write, I find that the my faith is formed in that crucible, not in the quiet. The small and insignificant things, the merely annoying and not-at-all-grand forbearances are like sandpaper buffing my hope and love, painfully. Moments of solace and reflection are gentle like a polishing cloth, clearing a surface here and there, and allowing me to see the One whose shining face is always there, in my children and in me, who is the Love that holds us together in the interruptions and between them.

Fourth Sunday in Ordinary Time

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“he preached as one with authority…”

.        .        .

The homily this morning was short (perfectly so, really–no time for the congregation to lose the thread) that I nearly missed it as I quieted the children. Fortunately, I managed to look up and listen just enough to catch the drift of it. Msgr Michael Heinz never said ‘Jesus changes everything,’ exactly, but that’s a crucial piece of what I came away with this morning. The thing about Jesus’s astonishing authority is that he not only says things, but what he says, happens. And so we can trust his word.

Good. Really good. Not just good to hear, but thought-provoking now, as I remember the bits of it I caught while attending to the kids. I think, yes, of course.  Jesus tells the storm to be still, and it obeys him. And Jesus is the Word, which goes forth (in Isaiah 55) and does not return empty, but accomplishes the purpose for which God sent Him. In the chances and changes of this life–and there are many for us, just now–one thing is sure: Jesus.

Makes it easier to mean “thy will be done,” that’s for certain. Thanks, Msgr Heinz.

not this again

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It is, I confess, one of those days. Unfortunately they are all too common these last few months. You know, the days when it all looks and feels pretty bleak, no matter what the weather. The sun is out today, actually, but it doesn’t matter. I know that the world is full of people whose lives are desperate and perilous in ways I can’t imagine, that hunger and thirst and terrible loss are the daily reality of so very many people in the world.

And I am sitting somewhere warm and reasonably comfortable. I have family and friends. I am not hungry or in danger. I can say to my daughters and sons when they are afraid at night that there’s nothing to fear–and I know that it is true. They’re safe, and they’re loved, and they have enough to eat and the opportunity to get an education and to play sports. Privilege. Luxury. Not only that, but the assurance of a strong faith and a hope that is in God and not in any of that stuff that makes life easy for the educated (a PhD, no less) white girl from the suburbs.

It’s all good. And yet, the overwhelming feeling is one of despair. Misery. For no reason. Everything shouts at me: be glad! But I am not glad. Or, rather, even though I know with an absolute certainty that somewhere inside there is gladness and hope, I cannot for the life of me find it. I can say to my soul, “Why are you downcast, O my soul? And why so disquieted within me? / Hope in God, for again I shall praise him, the help of my countenance and my God.”

Probably those two verses–or is it only one verse?–are the only reason I made it from 22 to 32, when there were so very, very, very many days like this. And here they are again, both the days and the bit of Psalm 42 (and 43) that got me through them. So, I guess I will say, with some frustration and petulance, “Not this again!” But that won’t be the end. It never is.

Eventually it will be that other thing again, that hoping and smiling thing, that thing that is not-depression. The joy will find its way to the surface of my consciousness and I will not only realize that the sun is shining, but I will feel its warmth and see how bright and beautiful the snowy landscape appears, bathed in its light.

And I will say again, with proper feeling: Deo gratias.