living with Down Syndrome

It happened again this morning: someone referred to folks considered ‘odd’ as perhaps being able to benefit from ‘treatment.’ I don’t know how parents of kids diagnosed with autism take the use of ‘on the spectrum’ to describe someone whose personality or behavior seems persistently at odds with some social conventions. (I’d be interested to hear.) But as a parent of a teenage girl with Down Syndrome, I find the comments worrying. Not because I  oppose the treatment; early intervention really helped Anna. My worry is that we’re narrowing the range of what counts as human and increasingly expecting that whatever goes wrong can be set to rights with the help of such interventions. It can’t. Not everything has a cure.

At the other end of today, I tuned in to a BBC 2 programme, ‘A world without Down’s Syndrome?’ Sally Phillips’ documentary highlights the wonderful possibilities for people with Down Syndrome. Articulate and accomplished people have overcome so much to get so far, and it is amazing. Eighty percent can learn to read; very many will hold jobs and live independently. We meet an actor, an advocate (Karen Gaffney; check out her TED talk), and an Icelandic woman who became famous after writing an article defending her right to life in a context where 100% of pre-natal diagnoses of Down Syndrome lead to terminations. Not every story is like theirs, but the message is clear: having Down Syndrome does not necessarily stop someone from having a fulfilling life. And it certainly doesn’t stop someone bringing joy to others.

The most awkward moment of the documentary, though, comes when a researcher in London asks Sally about what she wants for Olly, her son, should he outlive her. It wasn’t really a fair question. For the parent of a child (of any age) with a serious developmental delay, it can be an utterly terrifying question. Because we stand between our children and the world that would rather they not exist. Because not all of our children will achieve independence. Because we know that, however difficult it may sometimes be to care for children (including grown children) with special needs, they are not simply a ‘burden’. The unpredictable magic that our children bring to our lives happens because of the relationship we have with them. Without a relationship of love, commitment and understanding, the needs cease to be special: needs are simply a drain on the limited resources of our society. The implication of the question is clear: it’s all well and good for you to have this lovely time with your child now, but who will take care of him when you’re not around?

As long as that is the basic attitude, it’s not surprising that the two possibilities, when faced with a diagnosis are cure or elimination. If we can’t cure it, then we ought to get rid of it. But that all depends, I think, on what it is. What does it mean to be human? As long as the answer to that question consists chiefly of capacities and achievements, we will not be able to find a place for people with developmental disabilities in the world. But if we realise that being human means living with what comes our way, we might just find that they have a lot to teach us about our common humanity. Not everything we encounter in life will submit to our will, whether accident, illness, disaster or loss. For so much that ails us, there is no cure, no solution. Life’s for walking through, not for getting around. Let’s do it together.

 

What Anna taught me this week

Earlier in the week, I attended a celebration at Anna’s school, a school for children with special educational needs. There were music performances and awards given, smiling children and proud parents. Anna sat in the front row and watched it all go on.

I was a bit disappointed, myself. Why doesn’t my child get any awards? Before I could get myself too worked up, though, I realised that Anna doesn’t mind. She can enjoy the success of another without envy. Some people might say this is to do with having an intellectual disability. Maybe so. But I think also that it is a gift. Would that I had it, too.

moving

No vans required. I am moving all my blogs (yes, there are a number of them…) to a new website: atheologianinthefamily.net. When I started this blog, I intended to focus all my blogging on the lectionary readings. Then I started another blog for more general musings in theology and ethics. 
But my theology and my life are of a piece. I have been inspired by the prologue to the rule of Benedict, in which he describes the monastery as ‘a school for the Lord’s service.’ For me, the family is that school. Home is where we learn to love, to give, to trust, and to think. It seems to me that the most difficult place to live out the Christian faith is at home, in the family, where the daily vexations and struggles are utterly relentless. I once wrote to a friend that if anyone else tried my patience as unremittingly as my children do, I would find some means of escape. So here I am, learning to love those who are at once the easiest and most difficult people to love: those who are closest to me.
And I continue to be a theologian. I’m not a part-time theologian and a part-time mother; I am a full-time theologian and full-time mother. I think theology while I am cooking and disciplining and reading stories; I think about parenting while I am reading theology and Scripture and writing about ‘academic’ topics. These things live together in my soul, and I am both of them at the same time, by training and by temperament. As a teenager, I was certain that my future vocation had to be meaningful, and that I would have to practice it while fulfilling my other life’s goal: being a mother.
So here I am, having found that when dreams come true, they don’t always look like we expected or hoped. Living the dream means making ends meet and coping with defiance and struggling to meet deadlines and staying up late preparing for teaching. Sunny days and happy times grace my daily life, and usually I can see that my life is uncommonly good. Except when I can’t, and then the whole project of living and parenting and writing seems like it proceeds in deepest darkness. Fortunately the light continues to shine, even when my eyes are shut tight against it.
I am grateful for all who have read this blog, and hope that you will enjoy the new one.
light and peace to you all.

Monday of the sixth week in ordinary time

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.” And again, she bore his brother Abel. Now Abel was a keeper of sheep, and Cain a tiller of the ground. In the course of time Cain brought to the Lord an offering of the fruit of the ground, and Abel brought of the firstlings of his flock and of their fat portions. And the Lord had regard for Abel and his offering, but for Cain and his offering he had no regard. So Cain was very angry, and his countenance fell. The Lord said to Cain, “Why are you angry, and why has your countenance fallen? 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.”

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

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.

a tattoo

Mine, to be precise:

3907_574197496527_1845720_nThere it is, freshly inked–that’s why there’s a halo of reddish skin around it!

I thought about it for a long time. I mean a really long time. When I was 16 or 17, I told my mother that I wanted to get a tattoo. I’m pretty sure she was against it. But she didn’t say so, not outright. Instead, she gave me a few things to think about before I actually got the tattoo. First, she said, remember it will always be there. You’ll change, you’ll change your mind, but the tattoo will still be there. And it’s more painful to have it removed than it is to get it in the first place. Second, she said, your body won’t look the same forever. Something that looks nice on 16-year-old skin might not look as good on 70-year-old skin. But the tattoo will still be there. Third, she said, tattoo ink breaks down over time. That’s why you see so many green tattoos. (Perhaps inks are better now; I think my mother was thinking about tattoos done in the 1960’s and 1970’s.)

So for the next couple of decades, I turned the idea over and over in my mind. Honestly. I never forgot that conversation with my mother. Now, I consider it a moment of parenting genius, not because that strategy would work for everyone–not at all. Rather, it was a moment of parenting genius because it took account (knowingly or intuitively) of the sort of kid I was, and the way I was likely to make decisions. It appealed to reason and vanity, which I had in rather unequal portions at 16. (You can guess which trait I had in greater abundance.) She never said “Don’t.” Other friends, over the years, said “Do!” or “Don’t!” but my mother never did. She was a little surprised, I suppose, when I finally got the tattoo, but by then I was well and truly grown-up.

By the time I found that thing that I considered permanent enough in my life to have it inscribed on my body, I was nearing 40. I had three children. And, luckily, I had a good friend with plenty of tattoos and friends in the business, who happened to be in need of more ink. So I researched and found the image. I worked out the Greek. On the eve of Mother’s Day, 2009, I went with a couple of friends to get my first tattoo (by which time I had had my 40th birthday). There it is: the crucifix, stylized. The Greek text is from 1 Corinthians 13: “The greatest of these is love.”

I don’t suppose it will be my last tattoo. I have other ideas. Chief among these is an addition to the tattoo I already have, one phrase, in English this time: “the image of the invisible God.” Maybe 2015 is the year for that.

I’ll keep you posted.