felix hominum

My Christmas Wish List: part 1

Yes, I know all you folks are thinking to yourselves:  "What shall we get felix hominum for Christmas this year?"  Let me make your shopping experience easier:  red-hot cinnamon candies, straight from Dante's Inferno:

 

courtesy the good folks at Archie McPhee, where there is lots more for that special stocking stuffer.

It was here about 8 years ago

at this retreat center that I received a phone call from my wife, telling me that what was supposed to be a routine ultrasound turned up a picture of our unborn child suffering from congestive heart failure.

Since I'll be there on silent retreat for the next few days, I wrote this post ahead of time, and set it to publish at the time of the mid-morning Eucharist.  It was just before the service.  Got a message to call home, which I did. 

At communion we prayed for my wife and child.  Across the way from the main retreat house there is a simple, small monument entitled "To the Unborn".  I visit it every time I come here.  God met me there in a particular way 8 years ago. 

SJ is now a grade 1 student, ballet enthusiast & beginning skater, living with Down Syndrome.  Maybe I'll bring her here someday, and we'll both meet God together.

Eucharisto - I give thanks.

National Sanctity of Human Life Day, 2009

from the White House:

A Proclamation by the President of the United States of America

All human life is a gift from our Creator that is sacred, unique, and worthy of protection. On National Sanctity of Human Life Day, our country recognizes that each person, including every person waiting to be born, has a special place and purpose in this world. We also underscore our dedication to heeding this message of conscience by speaking up for the weak and voiceless among us.

The most basic duty of government is to protect the life of the innocent. My Administration has been committed to building a culture of life by vigorously promoting adoption and parental notification laws, opposing Federal funding for abortions overseas, encouraging teen abstinence, and funding crisis pregnancy programs. In 2002, I was honored to sign into law the Born-Alive Infants Protection Act, which extends legal protection to children who survive an abortion attempt. I signed legislation in 2003 to ban the cruel practice of partial-birth abortion, and that law represents our commitment to building a culture of life in America. Also, I was proud to sign the Unborn Victims of Violence Act of 2004, which allows authorities to charge a person who causes death or injury to a child in the womb with a separate offense in addition to any charges relating to the mother.

America is a caring Nation, and our values should guide us as we harness the gifts of science. In our zeal for new treatments and cures, we must never abandon our fundamental morals. We can achieve the great breakthroughs we all seek with reverence for the gift of life.

The sanctity of life is written in the hearts of all men and women. On this day and throughout the year, we aspire to build a society in which every child is welcome in life and protected in law. We also encourage more of our fellow Americans to join our just and noble cause.    History tells us that with a cause rooted in our deepest principles and appealing to the best instincts of our citizens, we will prevail.

NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, by virtue of the authority vested in me by the Constitution and laws of the United States, do hereby proclaim January 18, 2009, as National Sanctity of Human Life Day. I call upon all Americans to recognize this day with appropriate ceremonies and to underscore our commitment to respecting and protecting the life and dignity of every human being.

IN WITNESS WHEREOF, I have hereunto set my hand this fifteenth day of January, in the year of our Lord two thousand nine, and of the Independence of the United States of America the two hundred and thirty-third.

GEORGE W. BUSH

h/t merecomments

quote of the day - Dr Henry Morgentaler

I'm not going to debate whether he should have gotten the award.  What caught my eye was a quote in the Globe and Mail:

"The fact that some people are opposed on religious grounds mainly, well, that doesn't bother me as long as they're not allowed to influence other people by force or by whatever other means," he said.

Globe and Mail
(emphasis added)

I'll gladly give him the "force" thing. 

But "by whatever other means"?  Really?  Seriously?  This has got to be a case of a truncated quote, or missing context, or bad reporting, because otherwise....ummmm... you are against something like this:

Technological advances in fetal screening are presenting parents, and doctors, with enormous ethical, psychological and social dilemmas. Vulnerable, and with limited, biased, information, more than 90% of prospective parents in Canada choose termination if their fetus is determined in prenatal screening to have Down
Syndrome. They may never know there is a world of resources, possibilities and support out there. In spite of tireless efforts from support groups their information rarely reach prospective parents at the time they need it most.

In Canada the recent recommended expansion of screening protocols called for by the Society of Obstetricians and Gynecologists Canada has not been accompanied by a call for the expansion of the provision of non prejudicial information which outlines not just the potential medical conditions sometimes associated with Down syndrome but also about the richly rewarding lives possible for citizens with developmental disabilities in Canada. The United States recently called for the re-introduction a Prenatal Diagnosed Condition Awareness Act.

The CDSS acknowledges that in Canada women have the legal right to make decisions about the progression of their pregnancies; the CDSS insists that each individual family be given, without prejudice, information that accurately reflects the realities of a life with Down syndrome and other developmental disabilities.

Canadian Down Syndrome Society

So to live by Dr Morgentaler's quoted code of ethics, if someone comes up and says to me:  "Hey, I am thinking of abortion, because we just found out that there might be some sort of genetic thing happening with the fetus, and we hear that kids with Down Syndrome are awful and suffer a lot and all that stuff  - well, it's just better to have the abortion now",  I should simply keep silent?  I, being a "religeous" person should not be "allowed to influence other people" by "whatever other means", such as giving them information as presented by the CDSS?

Well, I'll have to think more about this.

 

a death and a birth on christmas eve

This past Christmas Eve, we sang a familiar carol: “Hark the herald angels sing, glory to the new born King".  Christmas is the time when we remember the birth of Jesus, and our attention rightly turns to him.  But tucked away in the middle of that familiar song, the old hymn writer  Charles Wesley penned a verse which reminds us of another kind of birth, one that has to do with us.

Mild He lays His glory by,
Born that man no more may die.
Born to raise the sons of earth,
Born to give them second birth.

She was one of the founding members of the parish where I currently serve. She passed away on the last day of Advent – Christmas Eve 2007.  Advent is the season of waiting – waiting for the birth of Christ. But Advent is also a reminder that all of us are waiting for that time of which Wesley wrote: 

Born that man no more may die.
Born to raise the sons of earth,
Born to give them second birth.

This old carol makes a remarkable claim.  It claims that Jesus has the power of life.  Many people and many things in this world have the power of death.  Age and illness, accident and malice, things beyond our control, and things of our own doing and making.  The world is full of the power of death, and the sorrow it brings.  We meet those things in the deaths of our loved ones. Even God knows the sorrow of the death of a loved one.  After all, He watched his Son die.  We will, each one of us, join her in that part of the journey of human existence.  We will all taste death.  Even Jesus did.   Yet this same Jesus, who tasted death, invites us to taste life. "Jesus said to them, ‘I am the bread of life. Whoever comes to me will never be hungry, and whoever believes in me will never be thirsty."

We are hungry for life, and in our heart of hearts we thirst for love.  How do we taste this bread of life?  How do we drink this cup that will satisfy every thirst? We come to Jesus and we believe in Him.  We believe his remarkable claim. Jesus promises that the one who comes to him will not “be hungry”, that the one who comes to him “will not thirst”.  Jesus is pointing us, calling us, to a certain hope.  What does the Christian soul look forward to?  What is our hope?

And this is the will of him who sent me, that I should lose nothing of all that he has given me, but raise it up on the last day. This is indeed the will of my Father, that all who see the Son and believe in him may have eternal life; and I will raise them up on the last day.’

The Christian waits.  Waits for the promises of God.  Waits for fullness of life. Waits to be fully and eternally born again into the kingdom of God.   Waits to be resurrected at the last day.  What is this resurrected life that Jesus promises? It is life as God intended it to be, before sin and the power of death entered the world.  It is not the life of ghosts or childish imaginations, of memory, or wishful thinking, or dreams of “what used to be”.  It is fullness of life as God intended it to be.  All the joys and loves and adventures of this life are, at their best,  but pale imitations of the life God intends for us.  All that is best and good and worthy in this life is only a small reflection of the life that is yet to come: “and I will raise them up on the last day.”

Our hope is that, even as we follow Jesus on the journey through death, we will, by his power, follow him on the journey to life.  We have no choice but follow Jesus on the journey to death.  It is allotted to all of us.  But there is an invitation to something more.  It is an invitation to fullness of life, and fullness of love:  Our God, who knew the death of his Son, but raised him to life, promises us the day when death will be no more:

Over the last year I had occasion to visit with her.  But today she needs no earthly minister – she is in the presence of the one High Priest;  all of us have had our Christmas feasting, but today she needs no Christmas feasting, nor a re-telling of the Christmas story – because today she feasts with the ‘newborn King’, in his Kingdom , in that place prepared for her;  she needs no choir to sing the old Christmas carols, for she is there, we trust, in the presence of the same angels who brought to us all the message of that first Christmas eve:

Mild He lays His glory by,
Born that man no more may die.
Born to raise the sons of earth,
Born to give them second birth.

The selectivity of a (non) inclusive church

It appears that a report from the  Anglican Church of Melbourne has recommended we move to a less-inclusive Church, especially in the case of "foetal abnormality, when abortion was 'the least problematic solution'".  Thanks to Scott for drawing this to our attention

The Church of Melbourne's home page features three great articles relating to children and youth.  I was particularly struck by the one entitled "Archbishop calls for national inquiry into childhood depression".  Hmmm.

Where should one turn at such times for a vision of the inclusive church?  Perhaps to those who are the forefront of the move toward "inclusivity":

"Planned Parenthood is an organization that I have always admired and respected. It does such extraordinarily fine work, and I'm very happy to be associated with it."

Rt Rev Gene Robinson, interviewed here.

"...we must challenge the condemnation by the Church throughout the centuries of such things as masturbation, birth control, abortion, and homosexuality."

Rt Rev Michael Ingham, article here.

It's true that we are not a single issue church.  It's a worldview.  Of course those with "foetal abnormalities" are included as a large subset of the objects of the "extraordinariiy fine work" which is done. You can see that such fine work is done in almost 85-90% of say, foetuses with a diagnosis of Down Syndrome.  But don't take my word for it.  Such extraordinarily fine work has been detailed elsewhere: 

Caroline Mansfield, Suellen Hopfer, Theresa M. Marteau (1999). "Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review". Prenatal Diagnosis 19 (9): 808-812.  PMID 10521836 ; David W. Britt, Samantha T. Risinger, Virginia Miller, Mary K. Mans, Eric L. Krivchenia, Mark I. Evans (1999). "Determinants of parental decisions after the prenatal diagnosis of Down syndrome: Bringing in context". American Journal of Medical Genetics 93 (5): 410 - 416

This is why I find talk of an "Inclusive Church" rather, well, deficient at best and deceptive at worst.  I have long known that the Episcopal Church has been active in the Religious Coalition for Reproductive Choice.  The latest op-ed from the Rev Anne Fowler celebrates this fact.

I am not convinced.  It is precisely those who require of us a sacrificial love, who will lead us into the Kingdom.  Of course we don't want to offer such sacrificial love, and so we look for the "least problematic solution".  We don't really want to practice Jesus' unconditional love;  we just want to use it as a slogan at synods, in church newspapers and in comments on our favorite blogs.  Don't let us see what it really looks like.

SJ, former "foetus with abnormaiity", presently 6 year old person living with Down Syndrome, showing a piece of "extraordinarily fine work".

For some, full "sacramental inclusion" means reaching the baptismal font...

"and there is no health in us"

Kids and MySpace.
Adults and Sin.

"They are posting bulletins about me." A bulletin is like a survey. "Megan Meier is a slut. Megan Meier is fat."

Megan was sobbing hysterically. Tina was furious that she had not signed off.

Once Tina returned home she rushed into the basement where the computer was. Tina was shocked at the vulgar language her daughter was firing back at people.

"I am so aggravated at you for doing this!" she told Megan.

Megan ran from the computer and left, but not without first telling Tina, "You're supposed to be my mom! You're supposed to be on my side!"

On the stairway leading to her second-story bedroom, Megan ran into her father, Ron.

"I grabbed her as she tried to go by," Ron says. "She told me that some kids were saying horrible stuff about her and she didn't understand why. I told her it's OK. I told her that they obviously don't know her. And that it would be fine."

Megan went to her room and Ron went downstairs to the kitchen, where he and Tina talked about what had happened, the MySpace account, and made dinner.

Twenty minutes later, Tina suddenly froze in mid-sentence.
"I had this God-awful feeling and I ran up into her room and she had hung herself in the closet."
Megan Taylor Meier died the next day, three weeks before her 14th birthday.

According to police reports and witness accounts, a fake MySpace account was set up, with the ultimate result of ridiculing an 8th grade student. She thought she was talking to to nice young boy who was interested in her.  According to police records quoted, it appears the fake account was set up and monitored by the mother of another junior high girl with whom Megan had a falling out. Read the story

h/t alice

National Down Syndrome Awareness Week - prenatal screening

November 1-7 is National Down Syndrome Awareness Week.  There are a number of resources on the Canadian Down Syndrome Society site.  Tonight the Felix clan and assorted friends will be celebrating with the Edmonton L'arche community.  Festive dinner, and an evening of fun and entertainment, and prayer for those among us who live with developmental disabilities. 

Over the past few years I've come to notice that the Canadian Down Syndrome Society has put out a few more resources dealing with a rather touchy contemporary issue - prenatal testing.  Representatives of the CDSS had a commentary published in the Canadian Journal of Obstetrics & Gynaecology [J. Obstet. Gynaecol Can2007;29(7):580–582], raising concerns related to the quality of information available to parents who undergo prenatal screening.  They also issued a press release, an excerpt of which is here:

Technological advances in fetal screening are presenting parents, and doctors, with enormous ethical, psychological and social dilemmas. Vulnerable, and with limited, biased, information, more than 90% of prospective parents in Canada choose termination if their fetus is determined in prenatal screening to have Down syndrome. They may never know there is a world of resources, possibilities and support out there. In spite of tireless efforts from support groups their information rarely reach prospective parents at the time they need it most.

In Canada the recent recommended expansion of screening protocols called for by the Society of Obstetricians and Gynecologists Canada has not been accompanied by a call for the expansion of the provision of non prejudicial information which outlines not just the potential medical conditions sometimes associated with Down syndrome but also about the richly rewarding lives possible for citizens with developmental disabilities in Canada. The United States recently called for the re-introduction a Prenatal Diagnosed Condition Awareness Act.

The CDSS acknowledges that in Canada women have the legal right to make decisions about the progression of their pregnancies; the CDSS insists that each individual family be given, without prejudice, information that accurately reflects the realities of a life with Down syndrome and other developmental disabilities.

The Canadian Down Syndrome Society is joining with regional parent support groups to ensure that the federal government enact a Canadian Pre diagnosed Conditions Awareness Act and that the provinces and territories participate or enact equivalent legislation within their jurisdictions. This Act, would ensure provinces and territories responsible for health care set aside reasonable resources, allowing organizations like the Canadian Down Syndrome Society to create and distribute informative, value neutral information to women and perspective families.

full text here

Asides which come to my mind:

Is this a matter of "inclusion"?  What does the "inclusive" church have to say on such issues?

How are to learn "radical" and "unconditional" love, unless we receive those who will require such love from us?

the life of eliot, storyteller

Eliot lived 99 days. 
He was born with Trisomy 18.

Eugene Peterson says it this way:
“Everytime someone tells a story well, the gospel is served”

All we have done is tell a story. The story of our son... I have purposely made strides to downplay the God-card. This was simply because all I could do was get in the way with my feeble attempts. God was in the story. He did not need to be exposed.  If you have found yourself drawn to this story and not really knowing why, I humbly propose that my son is only a vehicle to proclaim a story greater than his own.

from 99 balloons

(How shall we learn this unconditional love,

if we do not allow them to be born who ask it of us?)

ht sheepcat

CBC Facebook Wish List & the Anglican position on abortion

CBC recently ran a rather unscientific poll through Facebook.  It was billed as the Great Canadian Wish List, asking Canadians to vote for their number one wish for the nation.  The variety of wishes is quite interesting, have a look at the top vote-getters.

Surprisingly (to me at least), the wish list poll turned into a bit of a contest between opposing sides on the [insert favourite term here] abortion issue.  Perhaps that has to do with the extent of networking in which those "groups" engage - making them prime for a facebook setting. 

From what I can tell, it has been almost 20 years since the the Anglican Church of Canada issued statements on the question of abortion. 

Friday November 3, 1989

12:00 noon

ANGLICAN CHURCH AFFIRMS ITS POSITION ON ABORTION

In the light of the Government's announcement of a new Abortion Bill, the Anglican Church reaffirms its position that both the rights and needs of women, and the rights and needs of the unborn, require protection.

The Church welcomes a non-gestational approach. This accords with the Church's opposition to any arbitrary division which would make early abortion available on demand. The Church's fundamental position is that "abortion is always the taking of a human life and, in our view, should never be done except for serious therapeutic reasons." However, the Church's Abortion Report affirms that:

*an upper limit should be established at which "there is no reasonable prospect of viability";
*there should be a waiting period during which time counselling to women should be made available;
*other alternatives to abortion explored including "social and financial supports to meet the needs of the woman, in housing accommodation, child care, employment, retraining, welfare benefits, and income support, as well as consideration of adoption of the baby expected."

The Church further affirms that there should be a conscience clause, so that "the conscientious right of health care personnel to refrain from participating in abortion procedures be guaranteed."
The Church also is "opposed in principle" to "anticipate genetic defect in the foetus as automatic grounds for abortion," because as Christians we are "called to be the voice of the voiceless and powerless (and) must speak out when those different from or less able than the norm are to be denied the full rights accorded their fellow humans."

The Church's Abortion Report also recommends legislation to "ban commercial transactions in human genetic material;" or any possibility of deliberate abortion for purposes of "foetal cell farming" for human transplants, and welcomes the recent announcement of a Royal Commission on reproductive techniques "as a vehicle to examine these concerns and develop legislative measures."

The Anglican Church sees abortion as a public justice issue, challenging Canadians to build a society that affirms human life, which values children and welcomes a new generation, and which provides legal and social protection for women caught in the trauma of problem pregnancies. Such extensive social legislation, to reduce conditions which make the choice of abortion more likely, would include:

*programs and education to combat violence against women
  more affordable housing
*pay equity for women
*a guaranteed annual income, and other financial measures
*universally accessible, publicly funded day care
*an intensified national program to collect child support payments from delinquent fathers
*better educational programs about sexuality and contraception in schools

The Church does not see abortion as simply a "women's issue" but rather a community issue, which takes place on the battleground of women's bodies. Concerned that women are frequently forced to choose between marginalization and poverty or abortion, the Church believes that in many circumstances women are not "free" to choose to bear their children and so, because society fails to provide supportive structures, "abortion has become a means of 'restructuring the woman' by emptying the womb." Many Canadian women who choose not to bear their child make their decision out of alienation and hopelessness. "True choice must involve alternatives to despair" the Report concludes.

With the advent of more prevalent genetic screening, and ensuing abortions based on genetics, groups like the Canadian Down Syndrome Society have been wary of some of the directions our society is taking.

Somewhere in the back of my mind I have a question about whether or not our church is really interested in being "inclusive".  Some people don't get to be blessed.

Some people don't get to be born.

package deals are cheaper: abortion & bundled doctrine

The first time I purchased a mac, way back in the late 80's, I discovered the concept of the "bundle deal":  put everything together in one package, and sell it all together.  You can explore what's in the box later, after you've begun to open it up.  I want to offer up a few reflections on some recent statements by two of our Bishops.  There is more in the box yet.

"Any final thoughts?"

"Planned Parenthood is an organization that I have always admired and respected. It does such extraordinarily fine work, and I'm very happy to be associated with it."

Rt Rev Gene Robinson, interviewed here.

"...we must challenge the condemnation by the Church throughout the centuries of such things as masturbation, birth control, abortion, and homosexuality."

Rt Rev Michael Ingham, article here.

One of the points I have tried to make in various conversations with colleagues and friends is that the issue of same sex blessings is part of a package deal.  What I say here is only one part of that package deal, but I find it no accident that both Bishops Robinson and Ingham draw public attention to their support of abortion - explicit on the part of Bishop Robinson, and implicit (at the very least) on the part of Bishop Ingham.

To those who have been telling me that this is only about "one issue", I can only say:  No, it isn't.  And to those who think that this issue is isolated and can be treated as a matter of pastoral practice, I would have to say:  this is a package deal, because the principles by which these leaders are arguing for SSB, are the same principles by which they are announcing their support for other issues.

Must one who supports same sex unions also be pro-abortion?  On the surface, the answer is obviously no.  Or rather, "not yet."  The thoughts of these two Bishops begin to draw the logical conclusions of their worldview.  What has happened?  The great virtues of "faithfulness and commitment" have been removed from the sphere of procreation (that is, making human beings who are in the image of God) and parenthood.  Where are these virtues now located, exclusively?

This suggests, then, that the primary criterion for a Christian sexual theology is not procreation but rather faithfulness and commitment. This is the supreme message of the life of Jesus and ought to be the principal standard for Christian sexual ethics – not sexual orientation, not propagation, nor even marriage. Fidelity to one another, to one’s partner, and to God, respect for the dignity of every human being and for the sacredness of the human body, a rejoicing in human sexuality as both gift and expression of divine creativity – these are the elements of a more positive approach to sexuality that the Church needs to pursue.

Bishop Ingham (ibid)

I find it ironic that the Bishop mentions "a rejoicing in human sexuality as both gift and expression of divine creativity", yet fails to affirm explicitly the creativity of heterosexual marriage in the making of people.   [Of course, those who are married with small children know that you need to be a lot more creative than when it was just the two of you.]  How can one argue for creativity, and yet say that the Church must challenge moral basis for abortion?

Let me take just one specific example, for it is in specifics that our lives are lived.  To challenge the Church's traditional teaching on abortion, to argue that Planned Parenthood is a fine organization, is at the same time to deny the humanity of at least a certain group of people.  Let us narrow this down to genetic screening.  Let us agree that a wholesale approval of abortion includes as a subset abortion based on genetic screening.

("faithfulness and commitment")

Is it within the "Jesus' teaching" to say:  "I will have this child if I think she will turn out like this, but I will have an abortion if I think she will turn out like that"?  Does not such a choice, in the context of "challenging the Church's traditional teaching on... abortion" fly in face of this thing proclaimed as "unconditional love"?  How are we to learn this love?

("Over and over again, in the Hebrew Bible and in the New Testament, we learn of God’s faithfulness, and God’s unconditional love")

I am not convinced by the language of faithfulness and commitment and unconditional love which I have seen and read.  I might venture into the sphere of language myself, and coin a new term:

trisomophobia - an irrational fear and hatred of persons with Down Syndrome.  Trisomophobia is often expressed as support for abortion, including the 88-92% abortion rate in the case of detecting the presence of Trisomy 21 via genetic testing.  See, inter alia

Caroline Mansfield, Suellen Hopfer, Theresa M. Marteau (1999). "Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review". Prenatal Diagnosis 19 (9): 808-812.  PMID 10521836 ; David W. Britt, Samantha T. Risinger, Virginia Miller, Mary K. Mans, Eric L. Krivchenia, Mark I. Evans (1999). "Determinants of parental decisions after the prenatal diagnosis of Down syndrome: Bringing in context". American Journal of Medical Genetics 93 (5): 410 - 416

I must go for few moments, and tidy this post up later.  Someone made in the image of God requires my faithfulness, commitment, and unconditional love.  One who has a hard time speaking is requiring someone with a voice to speak for her.

Words are
power;
speechlessness,
an endless abyss;
garbled speech,
a target for dishonor;
persistent rotten storytelling,
a huge annoyance;
boring tapes that demean my image.

You whose language flows
coherently,
whose ideas sparkle like wine
on the tongue,
remember your gift
and use it well,
for me.

Craig Romkema,  poet
writing through autism
from his collection: "Embracing the Sky:  Poems Beyond Disability" .

 

Pam's Story: aborting a Down Syndrome baby

Eleven years ago this coming May, I had a “therapeutic” abortion when I was four and a half months pregnant with my only son, a Down’s syndrome baby—James Kent. Well-meaning professionals impressed upon my husband and me how we were rescuing our son—and ourselves—from a life of needless pain and suffering...

Our family doctor told us James Kent would be our shadow for the rest of our lives in choosing to birth him. We didn’t realize my son would be our shadow for the rest of our lives in choosing to abort him.

A short but powerful story, posted here., from the BeNotAfraid site.

BTW, our own family's story is up on that site as well:

In February of 2001 my wife were expecting our second child. We had gone for the usual routine ultrasounds, and were waiting for the standard commentary from our obstetrician. What we heard instead was that the baby appeared to be having some difficulties. There were signs of congestive heart failure. It was explained to us that there were several possible factors which might be causing this. One factor was the possibility of a genetic abnormality. We consented to having an amniocentesis – a genetic test. The results of the test confirmed to a high degree of probability that our second child had Down Syndrome, or Trisomy 21. We were asked if we would like to terminate the pregnancy.

Our first reaction to the news was akin to grief. As parents we want our children to be healthy, happy and we desire them to grow up to lead full lives. We already had a wonderful healthy daughter, and we felt grief that this baby was already suffering from a heart condition in the womb. We felt a sense of confusion - - we were on a steep learning curve: Trisomy 21, Down Syndrome, ASD, VSD. We felt there were so many new terms being thrown at us we hardly had time to digest the information, let alone deal with the reality of it.

We chose to have the baby. It was in some ways an easy decision, and in some ways very difficult. It was easy in that we loved this child – we wanted to be parents, we wanted siblings for our first daughter. And we both felt that our responsibility as parents began when we chose to get pregnant. It was difficult in that we had no romantic illusions about what parenting this child would mean. It would mean sacrifices – physically, emotionally, perhaps financially. What would this child’s future be? Would be caregivers for the rest of our lives? How would this impact our marriage, our family, our careers?

As we look back, a big part of the choice had to do with the difference between love and fear. I work in a major Canadian university with a large teaching hospital. I have many friends in professional fields of health care, education and counseling. As we became more educated about Down Syndrome, and got in contact with people in all of those fields, we began to ease the fear that can easily overwhelm parents of children with disabilities. I am also an ordained Anglican priest – our faith in God is part of our lives and we trust that Jesus and his way of life are part of our decision making. As we look back on that choice between love and fear, we recall the saying from the Christian Scriptures that “perfect love casts out fear”. We believe that God is on to something there: that so many of our important decisions in life have to do with the choice between love and fear. We could choose to love this child (no matter what), or choose to be afraid of the future, of how this person would change and affect our lives. In choosing to have the baby, we did not think God would magically “rescue” us from difficulties now or in the future, but that he would give us the courage to learn how to love more deeply through whatever the future may hold.

Today Sarah Joy is 4 years old; she will be attending the local preschool this fall with her neighbourhood friends. And the journey has been both difficult and rewarding in many ways. Such things can really only be lived, not explained. We have been through surgeries and specialists, developmental and education programs, and we continue to love her through everything. She is a great little sister for Emily, and she is a caring big sister to Adam. She loves music and dance, she loves to garden with us in the back yard, and she loves to go for walks with Grandpa’s dog. She is mischievous in her own way, and often collaborates with her older sister in sneaking treats from the kitchen cupboards. She has taught us something about the difference between love and fear, and continues to live up to her name – she is full of joy, and shares it with those around her.

 

 Update:  Sarah Joy is now 7 and entering Grade 1

Carleton University Student Council to Ban Pro-Life Groups?

UPDATE:   Anti-abortion groups on notice after CUSA tables policy amendment

Here's the lead from the Carleton University student paper:

Written by Sarah Bockstael   
Thursday, 23 November 2006

Sparks flew during question period at a Nov. 21 Carleton University Students’ Association (CUSA) council meeting after a motion that would prevent pro-life groups from assembling on CUSA space was tabled.

The motion — moved by Katy McIntyre, CUSA vice-president (student services), on behalf of the Womyn’s Centre — would amend the campus discrimination policy to state that “no CUSA resources, space, recognition or funding be allocated for anti-choice purposes.”

The motion was met with resistance from Carleton University Lifeline, a pro-life student organization that was denied CUSA club status at an Oct. 26 council meeting.

The easiest way to slice baloney is thinly.  I'll be cutting into this one piece at a time.  But for now I have a memory in the back of my mind of George Grant delivering a lecture at my old alma mater.  The University is failing.

Katy McIntyre, (VP Student Services) the mover of the motion, is also in charge of this:

This committee works to ensure that both events held and services provided by CUSA are accessible to all students. As well, it aims to raise awareness of issues affecting students with disabilities on campus.

Ms McIntyre, let me draw attention to an issue affecting certain students with disabilities.  Let me take just one thin slice.  Here at the U of A I've met several students who live with Down Syndrome and other conditions which we consider to be disabilities.  In order to raise awareness of issues affecting them, let me draw your attention to just one issue: abortion of their kind of person, simply because, well, it's their kind of person.

Thank you for your attention to this detail.

(Original post below)

Buzzing around the academic & blogospheric network for the past little while has been a report that Carleton University Student Council has been considering amending it's constitution so that "pro-life" student groups would be effectively nixed from campus.

In other news, universities are places of thought and open discussion.

I'll see if I can find some first hand info on this...all I've seen is second hand, and not the actual text of a motion.   

UPDATE:  a few people have been wondering about contacting Carleton:

To RESPECTFULLY express concerns to the University:

Dr. Samy Mahmoud
President and Vice-Chancellor Pro Tempore
Office of the President
503 Tory Building
1125 Colonel By Drive,
Ottawa, Ontario, K1S 5B6
Canada

Phone: 613 520-3801
Fax: 613 520-4474

Email: [email protected]

Church's Response to euthanasia of disabled newborns

The Church of England has put out a bit of response to this issue, which I talked about briefly over here.

The Nuffield Council on Bioethics, which held the initial discussions, intends to make its report available on November 16.

considering active euthanasia of disabled newborns

Should severely disabled newborn babies be kept alive at any cost or be “mercifully” freed from their life of suffering? The Royal College of Obstetricians and Gynaecologists considers "the ethics of prolonging life in fetuses and the newborn" should be debated.

The college has submitted evidence to the Nuffield Council of Bioethics, proposing an open discussion about the ethics of euthanasia for the most severely damaged of newborn babies. The option to end the suffering of a severely disabled newborn baby - who might have been aborted if the parents had known earlier the extent of its disabilities and potential suffering - should be discussed.

The Nuffield Council on Bioethics is investigating the implications of advances which enable babies to be born little more than halfway through pregnancy and kept alive. Very premature babies run a higher risk of brain damage and disability. Most die at 22 weeks (98%), though by 26 weeks 80% survive. Babies born before 25 weeks are not given medical treatment in the Netherlands and euthanasia is permitted in certain conditions. Recent studies show the rate of preterm babies is increasing.

The Royal College of Obstetricians and Gynaecologists wants a discussion over whether "deliberate intervention" to cause death should be legalized, as a merciful ending of the babies’ suffering. The college said it was not necessarily in favor of the move, but felt it should be debated.

read the rest

In related news, the next L'arche prayer evening takes place on the 3rd Monday of November.

 

notes on abortion & undergrad bioethics

In anticipation of tomorrow's session with an undergrad bioethics class, here are a few preliminary notes on a Christian approach to some issues surrounding abortion.

Since it's there, this is what currently constitutes the "official position" of the Anglican Church of Canada:

Resolution adopted in 1980 by the General Synod of the Anglican Church of Canada:

"That this General Synod, in proclaiming a Gospel of Life and Hope and Compassion for all of God's people, rejects the principle of 'abortion on demand' or for the reasons of convenience or economic or social hardship, and commits itself to strong support of:

a) such educational programs in the Church and comparable secular agencies which exist or may exist in the future for family life, birth control and social responsibility;
b) effective action to provide skilled counselling for families and individuals facing unwanted pregnancy;
c) community responsibility to ensure adequate practical help in the care and nurture of children."

Aside from that starting point, what are some of the 'Gospel principles' involved in these issues?  There are myriad articles which talk about theological anthropology - what is a human being?  When does human life  begin?  (when I heard the sound of your greeting, the child in my womb leapt for joy).  Why do women have abortions? - a difficult thing to state factually since Stats Can ceased keeping that record a few years ago?  All the studies for and against any number of feelings of relief or guilt, freedom or regret, let alone the debates about the medical and physical implications.  A war of bilbiographies is for others to wage.

For now I want to focus on three things:  redemption, determinism and mercy.

It seems to me that the starting point of the discussion from a Christian perspective has to be God.  It may seem self evident to some, but I think it is necessary to remind ourselves of a few basic points.   We trust that there is a God, and we trust that this God is active, and we trust that God's one of his actions toward us is redemption.

Redemption means God, through Jesus, which takes the trajectory of our lives in a new direction, a direction which we by ourselves are not able to turn to, nor even really imagine.  At heart it is a Christ-ward direction.  If we want to talk about abortion from a Christian perspective, we need to realize the power of God to transform, to redeem, any and every situation.  It finds its way into our hearts by means of that thing which we have come to call “hope”.

Against this stands a kind of social determinism in which we predict the “necessary” outcome of our current situations and conditions and difficulties.  When we leave our redemptive God out of the picture, then by necessity we feel we can with reasonable certainty predict what the future will hold.  We sense the trajectory - the direction - of our lives and we predict what will happen.  We forget the God who acts.

We become Christ-like as we show mercy.  “Blessed are the merciful, for they shall receive mercy”.  And perhaps at no other time and in no other situation is one life so completely at the mercy of another.  Mercy is not a character trait which is much espoused in our culture.   But it is a cornerstone trait of the Kingdom.

That's enough for now, and doesn't nearly begin to address everything, but I think the starting point is crucial.

bring your own oxygen tank...

from the CBC Manitoba website;

The body overseeing Manitoba's doctors is considering giving physicians the authority to stop or withhold medical treatment, even if the patient or family disagrees.

Okay, before we go any further, do you see what I see?  There have been cases where the family and the physician disagree over the continuation of treatment.  But the patient?  The patient ?   I'm just going to sit on this one for a bit.

"Hi Doc, I'd like this treatment to continue a bit longer."

Well, come on, Joe.  There are other people lined up for your parking space.  It's at a premium near the University you know.  You can park there through the winter, but come spring time...

"Are you sure Doc, I mean, couldn't we strike a deal or something?"

You know the old saying, Joe:  Doctor knows best.   Now just quit putting up such a fuss...

Well maybe that isn't quite the scenario they have in mind.  But then again...

Jocelyn Downie, a law and medicine professor at Dalhousie University in Halifax, says the final decision should rest with patients and their families.

"At stake is decision-making at the end of life. Deciding when we should stop treating and recognizing the decision doesn't belong to physicians," said Downie.

the public tragedy of genetic testing & abortion

 In the cities of ancient Greece a public performance of pathos would be staged.  The public tragedy on the stage would somehow cleanse the members of the polis by their participation in the great dramas of human tragedy.  The hubris, the shame, and the cruelty of the fates and gods are held up for public consumption, and the city breathes easy once again.  As if the public performance of tragedy atones for the crime, and restores the citizens to commonweal.  The Sheepcat alerted me to a recent performance, which he also addressed on his blog.  Not everything that needs to be said will be said here and now, but I must begin...

We have returned to our roots.  A story in the Globe and Mail (might be offline in a week or so) recounts the decision of “C. Smyth” and her husband to have an abortion 19 weeks into their pregnancy.  It is a rather sad tale on many levels.  C tells us that she and her husband of 7 years 

“could be perfect parents. We're professionals, with university degrees, own our own house, it's even paid off (we're financially careful yuppies). We're also fit -- we do Ironman events, marathons, play golf, travel and help support my parents.”

So what is wrong with the scene?  It happens that “our 19-week-old miracle is turning out to be tragically flawed.  A dreaded extra chromosome -- a triple X -- has robbed us of a healthy baby.”

“I cry myself to sleep."

Yes, and the agonizing choice you made has also spared you further tears. 

"My husband researches triple X on the computer. We have to decide quickly because it's already 19 weeks into the pregnancy. We don't feel capable of raising a severely disabled child. It would be different if we didn't have a choice, but we do.”

Righteous anger is an easily obtained commodity these days.  Shrill prophets against injustice are a dime a dozen, so forgive me if I play one for a moment.  You did a few minutes of googling and on the basis of that decide what kind of child this will be? Go ahead, everyone, look for yourselves.  Try hitting triple x syndrome on your favorite search engine and see what comes up.  I’m sorry to say this, but I don’t buy it.  To co-opt a phrase from another campaign - this is the 21st Century.  Catch up with the science, the education, the "progress".  University educated?  Professionals?  Urbane and sophisticated?

And then comes the question, which is really a statement: “Isn't it more cruel to bring a child burdened with so many disadvantages into the world?”

Cruel to whom?  To the child? Or to a lifestyle of Ironman events, marathons, travel and golf?   What is it that prevents you from parenting?  You have no strength, no character, no ability to push through the wall?  You have no resources? (“financially careful yuppies”)

I am sorry to say that I don’t trust you.  I suspect that someday the C Smyths will look at my child and ask a similar question:  “isn’t it more cruel to sustain a child burdened with so many disadvantages in the world?”  I know some of you will say it is an unreasonable stretch, but the link is there:  abortion of the flawed and euthanasia of the flawed.  There are no real grounds for making a distinction if you hold that there is truth in C’s “question.”

“We had already decided if it was a Down syndrome baby (one in 30 chance for a mother over 40) we wouldn't continue. I thought even my church-going mother (who goes door-to-door collecting money for those who are anti-abortion, and their pro-life campaign) could forgive that.”

C, let me reassure you of something, that God is always ready to forgive, even when people (including “church going” ones) aren’t.  And I suppose there are few "pro-lifers" out there who know this kind of decision from the inside.  But to forgive is different than to rationalize or accept and say “that’s okay”, and then sweep under the rug. 

“But what about this situation; it's not quite Down syndrome, but it's close.”

To what can I compare this generation?  Why do the prophets rise in selective anger?  I’ll wait for the letters to the editor (although the editor selects which ones will “represent” an alternative view).   But again, why do the prophets rise in selective anger?  I suppose at heart we all have our causes.  Some would (and all should) rise in anger had that sentence read:

“We had already decided if it was a black baby we wouldn't continue.  We knew from genetic testing that our child might be mulatto.  It’s not quite black, but it’s close.”

“We had already decided if it was a gay-gene baby we wouldn't continue.  We knew from genetic testing that our child might not have a high heterosexual drive.  It’s not quite gay, but it’s close.”

I hear you.

“We don't feel capable of raising a severely disabled child”, one that is “tragically flawed”.

And while this might sound harsh, to tell you the truth, I agree.   Who is?  I'm not.  Sometimes the C Smyths of the world are too much into their lifestyle;  they had already imagined their “treasured only child”, their “little athlete”.  In the whole list of qualities for parenthood, they neglected to mention love.

There is so much public tragedy here – this couple had to make a decision, one “too sensitive to share with family or friends”,  yet they are able to bring it to an international stage in a major newspaper.

What are the tragedies here?  That any parent is faced with the brokenness of creation.  It hurts.  I know.  That at such a critical time, they could turn to no one else.  They are alone in this.  And of course, there is the requisite self reproach from and to the Church – why didn’t we connect with these people at some point in their lives?  But if there was ever a case for “lifestyle abortion”, I think C has laid it out before us.

“I hate the sanctimonious people who have made this more difficult than it has to be.  No one begrudges couples thwarting God's plan by spending tens of thousands of dollars on fertility drugs, in vitro treatments, donor eggs, sperm, and surrogate mothers -- they get sympathy. But if you don't want to keep a seriously flawed baby, you bundle your pain in guilt and shame.”

No, it’s not the “sanctimonious” people who have made it more difficult.  It is the people, the people, with genetic disabilities and “tragic flaws” who have made it more difficult.  Sanctimonious persons like myself are only the messengers.  It is their cry of humanity which has made it more difficult for you.  You see, Ms Smyth, they want an answer to the “question” which you posed.   

Unlike other oppressed minorities, they have few self-advocates.  They do not stage demonstrations or run for parliament.  They do not organize media campaigns or engineer public vocabulary.  They do not file human rights complaints or challenge court cases.

And so sometimes the simple but unavoidable diagnosis is left for others to pronounce. 

You do not want me,
because you are selfish,
and you are willing to maintain that selfishness
at my expense.

And that, my friends, is a terminal diagnosis.

When I think of the future for my child and her peers, it is not the rapist, the abuser, or the paedophile whom I fear.  It is the C Smyths of this world, who with their genuine personal tragedy, their understandable choice, deny the humanity of another and openly declare: you are not one of us.   

In the spirit of the tragedies of old, somehow sharing the drama with the polis in a national newspaper eases the pain, atones for the crime, and appeases the gods. 

And of course, the offender is banished from the city.

Photo:

the tragically flawed, cruelly suffering under the burdens of disadvantage

Bill C-407 & dying with dignity

We currently have a bill before parliament dealing with euthanasia.  Bill C-407 contains the following central phrase:

(iv) ...has, while appearing to be lucid, designated in writing, before two witnesses with no personal interest in the death of the person, another person to act in his or her name with respect to the person who aids him or her to die, and with respect to any medical practitioner, while the person does not appear to be lucid...

Now what on earth does that mean?  I judge that you do not "appear to be lucid", or perhaps I judge that you do appear to be lucid.  It seems a rather ill conceived criterion for ending someone's life.

The text of the private member's bill is here.

An interesting perspective, from an award winning palliative care practicioner, is over here.

ps.  Nov 1-7 is national Down Syndrome Awareness Week in Canada.

genetic testing, Down syndrome & abortion

Things happen in sets of three, don't they? 

Today I received my newsletter from the Edmonton Down Syndrome Society, reminding me that Nov 1-7 is national Down Syndrome Awareness Week.   I also caught a Washington Post article entitled:  The Abortion Debate No One Wants to Have.  It's about abortion based on a diagnosis of Down syndrome.  And an email from a colleague reminding me about a class on biothethics tomorrow, where the topic will be (go ahead and guess).

Now let me speak of some thoughts I wrestle with.  I am the father of a child with Down syndrome.  We knew of the likelihood of this diagnosis because of prenatal testing.  I wrote of that experience earlier.   I find it rather difficult to maintain the notion that we as a society will place value on persons with Down syndrome if it is permissible to have an abortion for no other reason than that Down syndrome is detected before birth.

The author of the article raises some tough questions in her analysis.  To what other identifiable group can we ethically promote such a policy of selective abortion?   "It looks like your son might be born left handed, I suggest you think about terminating the pregnancy".   What would ever happen if a genetic marker were positively identified for sexual orientation?   Would society permit parents to pre-select and abort according to their personal or religious preferences?  "Pastor Billy-Bob, it looks like your son might be born gay, I suggest you think about terminating the pregnancy".   Would there be a public/media reaction to such a scenario?

Tough issues, but they need to be looked at.

I'm just sayin', that's all...