felix hominum

William Watson Lodge, GRIT & dads of kids with disabilities

I recently spoke to the AGM of an organization which delivers educational and development services to children with disabilities.  The organization is locally known as GRIT - Getting Ready for Inclusion Today.  They are self described as "an exemplary, fully-inclusive, non-profit early childhood program for children with disabilities 2 ½ – 5 ½ years of age."   While I tend to do a lot of public speaking (it comes with the territory in my line of work), it took me quite a while to figure out and put on paper exactly what I wanted to say.

I have read a fair bit of the literature on the topic of family dynamics situations where one or more of child has some form of disability.  But this was more about my own personal experience, as a father who happens to have a child who lives with a disability.  I'll not reprint here everything I said there, but I do want to highlight a few anecdotal items which I believe are important.  These are the sorts of things one hears after the formal address is finished, over coffee, with other parents who are simply looking for a place to tell their story.

None of this is absolute, it is merely a pencil sketch of a few conversations, so let that guide your interpretation.  First come the logistics.  And by this I mean the countless extra trips to doctors, specialists, therapists, assessors, psychologists - you name it, and chances are your kid has had more appointments in a few short months than you have had in your whole life.  Many times it is (in a 2 parent family) the mom who does this.  And many times it is the dad who catches up afterward.  He was at work perhaps, and simply cannot find a way to be there for these events.  This has led in some instances to dad feeling disconnected, playing "catch up".  From the perspective of the mom, it is doubly exhausting to have to retell the entire experience a second time.  She has already heard once that Jane or John has this or that wrong, that nothing can be done for X, that her child will need extra work here or there.  Many two parent families I spoke to that evening found this to be the case.  Sometimes the dad will feel disconnected from what is happening and try to get more involved, more supportive.  But sometimes the feeling of disconnect will result in a feeling of helplessness, and perhaps even further alienation from their child's life.  This is only one small topic among many:  how do fathers get more involved, more informed and more supportive?  And most important of all, is there a place for them to simply tell their story. 

I'll give the rest of talk & some of the feedback in bits and pieces over the next little while.  A few days after I spoke at the AGM, we had a chance to spend a few days as a family at William Watson Lodge.  It is a facility developed specifically to provide outdoor recreation for persons with disabilities and their families. It is set in a fabulous location:  on the shores of Lower Kananaskis Lake in the Rocky Mountains of Alberta.  Our second daughter lives with Down Syndrome, and so we "qualified" as a family to stay at the facility.  For people with mobility challenges, there are some wonderfull accessible trails with amazing views of the Rockies.  It really is a great place to spend a few days.  We are hoping to get back there again next spring, or even during the winter for some X-country skiing & fireside laziness.

 

 

 

 

Our wedding anniversary, the 4 kids gone to Grandma's...

finally, looking forward to a good night's sleep.

my favourite Father's Day meal combination yet

Hot dogs with chocolate fondue.  Ya gotta love it.

An event the felix clan will be attending:

What:  Songs for Small and Tall- all ages music & singalong

Where:  St. Margaret’s Anglican Church: 12603 Ellerslie Road

When:  Friday, October 2nd at 7.30 pm.

Bryan Moyer Suderman is a musician in the Mennonite tradition; his music company is called ‘Small Tall Music’, because, as he says, he writes ‘worship songs for small and tall’ – for children and for adults (see his website at http://www.smalltallmusic.com/). Bryan has produced several CDs of songs for Vacation Bible School and Christian Education programs, as well as worship songs, a CD of songs about stewardship, and a new CD based on texts from the prophets. This concert is jointly sponsored between St. Margaret’s Anglican Church and Edmonton First Mennonite Church, and it will be an all-age event. Admission will be by donation at the door, with a suggested donation of $10 per person or $25 per family.

what a person with Down Syndrome taught me about sin of grasping

Parents of children with disabilities get used to the parade of specialists who become a routine feature of family life.  Some years ago, when SJ was probably about 2, we had a visit from an occupational therapist.  It was a fascinating event.  Apparently the natural position of the hand is clenched, closed.  Opening the hand is actually a learned behavior.  We make the mistake of thinking that it "comes naturally", but that is because for most of us, we do not realize how we are taught to do it.

With SJ, the process was intentional and long, and yes, difficult.  This learning to "ungrasp", this letting go of things to which we cling so fiercely, is not merely a physical difficulty. 

Sometimes people can be parables.

The rest of the talk: "Thanksgiving After Childbirth:  Choosing Sarah in an Age of Options", will be given on Saturday, May 9 at 2pm (St Tim's church, 8420- 145 St, Edmonton).  It's part of the program of the Canadian National Prayer Book Society AGM.  The talk is open to the public, and in the spirit of common prayer, it's about how one person taught me (and still does teach) many things about the Risen Christ.  I'll post it here sometime afterward.

Jon Buller, I never said thank you

Canadian musician Steve Bell was in town recently with a few friends:  jazz pianist Mike Janzen & singer/songwriter Jon Buller.  The local date of the tour also included some numbers by the newly signed Kerri Woelke. 

I love Steve Bell's easy story-telling style.  He weaves music and memories together.  I was tempted to say "at his performances", but I have never had the sense that his shows/concerts are performances.  He has an unmatched stage presence. 

I was really delighted to hear Jon Buller again.  I had the privilege of working with him many years ago for a one-off weekend event in Winnipeg - he provided the music for a regional event & I think I came up some sort of talks/events, under the auspices of some great folks from the local Anglican diocese.  I had never listened to his music prior to that event, and picked up a couple of his CDs.  One of his songs has had a special place in my heart for a long time.  It was just around the time that we received the news that SJ was suffering from congestive heart failure in the womb, among many other probable medical difficulties.  Shortly thereafter we received new that SJ also was likely to live with Down Syndrome, should she come to term.

We went home and my wife went to sleep.  I remember wanting to pray, but not knowing where to begin.  For some reason I put on one of Jon's CDs, and played a track called "Lord How Excellent".  It is based on Psalm 8

When I look at your heavens, the work of your fingers,
   the moon and the stars that you have established;
what are human beings that you are mindful of them,
   mortals that you care for them?

O Lord how excellent is your name in all the earth.

The song itself speaks of praising God in the midst of difficulties, remembering that there is healing in the act of praise.  Jon helped me through that night, and many nights to come.

Thank you.

top & bottom of the sine curve

Today's schedule reminds me of some of the basics.  I'm spending the a.m. doing some reading in a variety of topics that are of personal interest to me.  A bit of review of Eriugena's Periphyseon, a bit of Virgil's Aeneid, and some of Boethius' Consolation of Philosophy (from which work, astute readers will recognize the title of my blog as stolen from bk II).  All in prep for Tuesday's class, in which Pooh discovers early medieval Christian thought.  If you are coming, don't worry, we are not doing all three at once.

Then in the early p.m. I'm picking up SJ from school and we are going to spend a couple of hours reviewing speech therapy exercises, and then maybe try to do some basic math skills, and finish up with some word recognition practice.  There's a great resource out there for reading:  Teaching Reading to Children With Down Syndrome: A Guide for Parents and Teachers (part of the "Topics in Down Syndrome" series).

I find myself with a tendency to categorize things - but when it's all said and done, which is the top of the sine curve and which is the bottom?

a sign of great hope

We went out for dinner last night, to a real place where you pay for people to bring you food and then clean it up.  We took all 4 kids and, and, and.... no one spilled a thing!

I feel like this calls for a burnt thank-offering.  If you need me I'll be busy flaying a lamb in the backyard BBQ pit.

the final layer is going on the rink today

And I suspect that by 6 o'clock tonight ti will be ready for the annual Walker Backyard Hockey Classic.  A five on one game in which a man tests his mettle against a woman and 4 children. I think last year I lost 13-3. 

This year I'm taking no prisoners.

Trisomophobia: What Palin Triggered

It seems that 6 month old Trig Palin, the son of some American politician, is making his weight felt in not just one, but two countries.  In particular, Trig has sparked something in Dr Andre Lalonde.  Dr Lalonde, according to the Society of Obstetricians and Gynaecologists of Canada (SOGC) has "developed an expertise and is an advocate for safe Motherhood and family planning as well as promoting women’s empowerment for reproductive health."

In a recent Globe and Mail article entitled "A message of hope - or pressure to keep the baby?", Dr Lalonde is quoted as concerned that Trig might  "have an implication for abortion issues in Canada".  According to the article, Dr Lalonde seems to think that "Ms. Palin's widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same".

Two things.  First, in case I forgot to mention it, Trig lives with Down Syndrome.  Second, it seems that Dr Lalonde is advocating for the wrong kind of testing;  if his concern is that the parent will lack "emotional and financial support", then perhaps he should advocate testing potential parents before they get pregnant.  But somehow I don't think he'll go for that.  Or he could simply join forces with the Canadian Down Syndrome Society to improve resources for parents whose children live with Down Syndrome.  If one raises "support" as the issue, then one should be just as vocal about improving that support.  Perhaps Dr Lalonde's comments were "taken out of context" as they say.  Or at least as they say when a comment is found to be lacking in wisdom or compassion.

(ed update: - I recall Dr Lalonde's last comments in a national Canadian newspaper.  The SOCG began recommending genetic testing for all pregnant women and "automatic" genetic testing for pregnant women over 40.  "Choice"?  What exactly does it mean to be automatically given a test?  Here is what he had to say in comment to the National Post:   “Yes, it’s going to lead to more termination, but it’s going to be fair to these women who are 24 who say, ‘How come I have to raise an infant with Down’s syndrome, whereas my cousin who was 35 didn’t have to?'"  Think that one through.  Carefully.

Dr Lalonde, who says that "above all else, women must be free to choose", seems in fact to be worried by one choice in particular:  Sarah Palin's choice to have a child with Down Syndrome.  He is worried about Sarah Palin's choice to have a child with Down Syndrome.  I don't take a huge interest in American politics, but I do take an interest in the one person who might be forgotten in all of this.  In the midst of this, it might be easy to forget who we are talking about: Trig.  It is easy in the article to forget Trig.  For those frightfully worried about Trig's presence in the world, it might even get worse:  Trig might learn to walk in a little while, perhaps use signs and then start talking.  Maybe even take up an interest in music, start going to school and hanging out with friends.  Get invited to a birthday party, and then host a birthday party of his own.  Take swimming lessons, help dad build a playhouse, read out loud before bed.  Before you know it, that "emotional and financial" burden is returning the investment in spades (but more often in hugs and laughter).

I have sometimes wondered what would happen if the Down Syndrome community coined and used a new word: trisomophobic.  And kept on using it.  But you know what?  They won't, even though such "tactics" seem to have worked well for other groups in public debate.  And why won't they?  In the years I've been involved with people who live with Down Syndrome, it seems that they are not interested in debate, or scoring rhetorical points, or the great machinery of politics.  Instead they trade in only one commodity:

Love.

Trig just might influence someone to rethink a possible abortion due to genetic anomalies.  Let him.  It happens, Dr Lalonde.  I know because someone told me the same thing - they saw our family, imperfect as it is, and they took a new view.  We are not heroic parents, my wife is not governor of a state, we are by no means wealthy.  We are not out to change the laws, just the hearts.

Go Trig.  If you need a pen pal along the way, you can write to SJ:

some updates:

The LA Times blog, which first circulated this story in the States, is now saying this. 

There are numerous persons in the Down Syndrome community who have reacted to this story.  I'll try to assemble some links and post them later.

Dr Lalonde is also quoted in this article as wanting to reduce the number of abortions in Canada.  Caveat emptor.

Much, much more on Dr Lalonde's organization here:  Thoughts on Dr Andre Lalonde & Trig Palin

the summer project: building a playhouse for the kids

Back in early June the smaller members of the felix clan got the idea that dad should build a playhouse for them in the backyard.  Two words -- summer project".  So without further ado we had to figure out where exactly it should go.  Son #1 thought it should be close to the kitchen, with the option of installing a tunnel through which snacks could be passed directly from the kitchen to the playhouse.  I liked the idea, but mrs felix said no.  The project is almost completed.  This afternoon we put the second layer of drywall compound on the interior.  There are still a few bits and pieces to finish up.  Tip: you can actually save a bundle on good quality materials by buying ends and left over sizes.  The guys at Cedar Village gave me a great deal on some very swank cedar siding.  It is all leftovers and shorter pieces from other jobs.  Here are a few shots of the work in progress:

It's just one of those things

which I suppose I am old-fashioned enough to believe in.  Few things can match the pleasure, the fulfillment, of a father teaching his son.  My first experience with a canoe was in the rivers of Nova Scotia.  We had an old red Coleman, probably a 16 footer.  I don't remember much about the J stroke practice or the safety lessons.  I simply have a memory of a voice from the back of the boat:  "Isn't it peaceful here?"  I think that was just before we hits the rocks.

Adam got his very own paddle for his birthday this year.  He is turning 5.  And before those imitation thrills which pass themselves off as adventure get hold of a boy (or a man), he should have a taste of the real thing.  So we practiced some strokes, we did a few tandem  runs to get the feel.  We got to feel how the boat moves when you take a wave broadside, and then the careful explanation and technique of the preferred method:  you take a wave head on.

And then you go solo.

When you are 5 years old and captain of the boat, you can be anything - an admiral, an adventurer, a voyageur exploring the wilds.  You can shout "ahoy" at the top of your lungs.  There is a place where you can go out into the deeper waters, over your head.  It's okay - I'm close by, and it's not over my head.

If you get in trouble, don't worry too much. 
Your Father is close. 
The water might be over your head, but it's not over His.

I hope you will remember that in the years to come.

what do you do with godparents?

Most of us in this branch of the Christian family have them.  Or we have asked people to be godparents to our children.  So we either choose godparents for our children, or perhaps we have been asked to be godparents, and then the connection is lost after the morning of the baptism.  So let me share just one little tradition which has grown up in the Felix clan over the past several years:  "godparent parties".  We had one this afternoon. 

Over the past several years we have had a number of godparent parties.  These get togethers are opportunities for us as a family, and as an extended Christian family ("church") to celebrate the goodness and love of God in the lives of each of our kids.  So this afternoon we had a celebration:  a big old feast, interspersed with prayer, and singing, and games, and fun.  We try to have one on an anniversary of a baptism, or as close to the date as possible. 

While families often have "rituals" and traditions which grow up or are inherited (there was always a certain kind of food when the playoffs came in our house), we should also find space for the spiritual traditions and rituals which remind us of Jesus' call on our lives, and of his love for each of our children.  If you are a parent or a godparent, I suggest that you give it a try.  Get together, pray, sing or do whatever it is that fits.  If you are a godparent, it is one simple way of starting to fulfill your promise that you would help this child grow up in faith.  And if you are a parent, let me know of any other such family traditions which you have used to hand on the faith.  I'd like to start collecting some resources around "Christian parenting."

What is Christian courage?

Alice the Camel's quote on bullying (which came via Rick) reminded me of this episode:

Last year a young girl with disabilities was about to be harassed by two boys on a neighbourhood playground, when another a young man who heard what was happening came over and stood between the girl and the two boys.  He stood his ground until they backed down.

The young man is a Christian, and "knew what they were doing was wrong".  He is also 5 years old; a kindergarden student at a local school. He was recognized by his school for bravery.  I know the story because the girl is my daughter.

That's Christian courage.

Maundy Thursday: "Unless I wash you..

you can have no part with me"

what grandpas are for...

story time...

 

Sunday blessings: "Things Danny Taught Me: A Father's Story"

He stood there, dignified, in his polyester fastfood uniform, earnestly waiting for the bus and oblivious to the river of traffic around him, to the forced smiles and brief, uneasy glances from passersby.

In a world of multiple urgencies and lives racing at 50 mghz, he had one focus only--in this case, the Laurel Canyon bus to McDonald' s. He was alone, and he needed to concentrate. He had a job. That meant a schedule and responsibilities.

Stopped at the light, I watched him through my windshield. He was eighteen or so, short black hair slightly askew, with the thick body and unfinished facial features so common to Down's syndrome. Three years ago, I would have looked away, just as the other people nearby on the street were doing now.

But instead I just watched. I find that I can't look away anymore, not from Down's people, not since Danny...

You discover a lot about yourself. I assumed, with the callousness writers seem to perfect, that this "Danny thing" would be the source of so much good material. Well, he is; but not remotely in the way I expected. For the two years since his birth, every time I've sat down to write about him, an arctic silence has settled into my head. Danny will not be used. He is too intimate, too demanding, too funny, too eager to play; he does not fit conveniently into a prefabbed holding pen for the mentally handicapped. And I am too ignorant and not far enough along the road to offer any advice, other than to recount the experience of my own family.

I know that this is doable. It hasn't been easy, but it hasn't been a cross either. You stop thinking like that. Danny's just here, he's part of our normal routine. You adjust. Our manage has the same love and strengths, and also the same faultlines, it always had. So does the family. You learn to stop melodramatizing; you get tired of your own bathos.

I also know that we've been given a gift. A friend, Chicago novelist Patrick Creevy (Lake Shore Drive), the brother of one Down's person and father of a Down's daughter, puts it this way: "The best thing [about a mentally handicapped child] is having a son or a daughter in whom you're never disappointed; you're absolutely out of the business of disappointment .... So many of the expectations that in parents turn tragic, we're safe from. And in its place comes this wonderful, unconditional love, an unburdening from the hunger for perfection."

It's a kind of redemption. You enter a community--parents of sick and handicapped children--filled with far harder stories than Down's syndrome; where quiet, heroic love is an ordinary affair, and you learn from it.

Francis X. Maier is Chancellor for the Archdiocese of Denver and Special Assistant to Archbishop Chaput. This article first appeared in Commonweal magazine.  Full article available at Be Not Afraid.

book review: God on Mute: Engaging the silence of unanswered prayer II

Last week I spent 3 days on a silent retreat with a group of local clergy.  This is an annual event;  it's been a January tradition to bundle up, head out to the Star of the North Retreat Center, and spend a few days in prayer, reading, listening, and fellowship.

As it was a silent retreat, I thought it only fitting to take along Pete Greig's "God on Mute:  Engaging the Silence of Unanswered Prayer".  I started the book a few days prior to the retreat, and thought it would be a good book to read at that particular place, at that particular time.

It was seven years ago, during the annual silent retreat, that I received a message to call home.  We were expecting our second child.  AK had gone to the clinic for a routine ultrasound (as if seeing into the womb can possibly be routine!).  Sarah Joy was suffering from congestive heart failure in utero.  There could be any number of causes.  We'd like to do more tests.  Would you like to schedule a termination of the pregnancy?  We'd like you to speak with the geneticist.  Pete Grieg's book tries to give people a way forward when God is silent.  Not when God says "no" to our prayers, but when God decides to take his time in giving us the answer, when he is silent for a moment. 

The overall pattern of the book is a journey through the last days of Jesus' earthly life.  We walk with Jesus on Maundy Thursday.  If there was ever an "unanswered" prayer, it is surely Jesus' prayer that we might be one.  Jesus' prayer in the garden is often a model for our own.  We pray with Jesus that cups might be taken away from us, and yet so often it seems that is the only draught God offers.  Not my will, but yours.

On Good Friday we are God-forsaken.  Jesus' cry of abandonment from the Cross becomes our own - why, why, why, have you forsaken me.  In this section Greig tries to work through some of the "why" questions.  Why does the world seem to work the way it does?  Why is my prayer not being answered?  What are the ways in which these questions have been answered by Christians, and how can a deeper understanding of God's will, God's world and God's work help us through our personal "Good Friday" prayers.  In this section he takes us through the series of simpler answers which we might be accustomed to.  I have heard many of those same answers from well meaning friends and strangers.  I think my favorite was the plea to "Just pray Jabez" and SJ would be healed.  But while those answers which Greig enumerates can and do have their place, I am glad that he takes us to Holy Saturday.

In our fear of unknowing, we leapfrog Holy Saturday and rush the resurrection.  We race disconcerted to make meaning and find beauty where there simply is none.  Yet.

This is the real place of struggle for unanswered prayers.  The time when God truly is silent.  Greig's observation is true - we want to hurry through Holy Saturday to Easter.  It is a day of silence.  Yet, we are reminded: though God is silent, He is not absent.  This is the deeper place of Christian trust, when we have to say "into your hands I commend my spirit".  It is the place of trusting in God's presence with us when all signs of his presence have vanished.  Too often we try to rush others through this day as well.  Or we try to fill the void with something of our own creation.  I think of how we like to fill hospital rooms with chatter and stuff, when sometimes our mere presence is what is needed.  Not our voice.

Then Greig points us to the Resurrection - the place where all prayer is answered.  The book is seasoned with his own experiences of struggling with "unanswered prayer".  And at the end he gives a bit of a guided resource for reflection which can be used alone or in groups.  The book is a good antidote to overly triumphalist Christianity, and it addresses a concern that many Christians have, but which often (I have found) they are not very willing to admit.  After all, what kind of Christian is ignored by God?  This book is food for thought and prayer for all of us who have wondered why God doesn't answer... I'd give it 8 out of 10.

related post:  God on Mute

Sunday blessings: John Van Sloten - converted by an unusual missionary

Fifteen years ago, my wife and I had a son born with Down syndrome. His birth was devastating to me. That first night, I ran scenario after scenario of how shitty life would be as a father of a "retarded" child.  Will I ever love him? Will I have to take him bowling with other disabled kids when he's eight — bumpers in the gutters because no one could throw a ball straight?

Will he have any friends at 18, or will he sit alone in some high school cafeteria? And when he's 40, and I'm dead, will he rot in some horrible institution?

It was a rough night.

'That must mean I love him'

Three months later, while doing some community service in Rochester, N.Y., I got some answers.

I met a 40-year-old man with DS. His life was filled with meaning and he was the centre of his church community.

Two days later, I met an eight-year-old DS boy whose beauty and physical strength were so readily apparent. He kept showing me his muscles! Then, I met an 18-year-old DS teen whose social calendar was too full to have any time for the likes of me.

And then the next day, while driving back home to Toronto, the most powerful answer came. I caught myself missing my little boy, and thought, "Well if I miss him, then that must mean I love him."

Through the tears of that moment, it then hit me. God knew. The night I was running all of those anxious scenarios, he knew the answers I found in Rochester laid ahead.

The curtain pulls back

And then the epiphany came. It was like a curtain was pulled back and, in that moment, I got to see a glimpse of the goodness of God — absolutely huge, mysteriously holding all of reality, powerfully sovereign over all things, providentially moving and loving it all.

full story from the CBC

ps - John is now a pastor at this church, which has done some great things for a friend of mine.

mmm... pancakes!

Just because.

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...

move over Santa, the real St Nicholas is here

every santa needs a hat like that... 

ps that's SJ (daughter#2) on the left, and on the right, well, you know who that is.

There is no better way to spend a winter day

than preparing for that great Canadian tradition:  the backyard skating rink.  A few layers of water, and Adam and I should be out taking shots early this evening.  I'll be generous and take the first turn in the nets.  But after that...

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

Happy Harvest Thanksgiving

the youngest member of the felix clan, enjoying the bounty

"open thy mouth wide, and I will fill it" (psalm 81:10)

Child Sacrifice in Ancient Canaanite Religion

probably occurred right around their bedtime.

I'm just saying.

the horse and his boy

book review: Girl Soldier - A Story of Hope for Northern Uganda’s Children

Grace Akallo was 15 years old when she was abducted by the Lord's Resistance Army from St. Mary's College in Aboke, Uganda.  “Girl Soldier” tells the tale of her own ordeal, as well as shedding light on the history of the conflicts – political and spiritual - which have been part of the landscape of the “pearl of Africa” for decades.

Grace tells her story, which is ultimately “hopeful”, in short first person pieces.  It is interspersed with the  writing of Faith McDonnell, a Christian activist and author.  I think the “back and forth” format of book does not work as well as intended, but I can overlook that fault for two reasons. 

First, Grace tells her story in a style which emphasizes the role of prayer.  Again and again she tells us how, in the midst of unthinkable evil, her heart turned to prayer.  There is very little “shock value” writing.  It is the bare bones of a Christian seeking God in the midst of a trial most of us could not even begin to imagine.

Second, I found Faith’s history of the conflicts enlightening.  While I was aware of the general plight of the people of northern Uganda, I knew only a little of the history behind these conflicts.  Faith supplies ample research and documentation for a novice to Ugandan history.  It is remarkable.  I’m not particularly prone to using such language, but if I was ever to point to something and call it “spiritual warfare”, then this is it.  I found myself agreeing with her conclusion that “some battle is being waged that is beyond that of flesh and blood, beyond the world that we can see with our eyes.” [213]

I picked up this book yesterday evening and finished it somewhere around 2 in the morning.  Every once in a while I would do some digging on the websites recommended in the book.  As a father to 4  children, I can't even begin to imagine the nightmare that these children and their parents are enduring.  The book offers a glimpse into this crisis, with a variety of resources and suggestions for those who are moved to prayer and action.  The immediate humanitarian needs are enormous, as are the long term needs of reconciliation and  forgiveness.

But as Archbishop Henry Orombi states in his preface to the book:  "There is hope for Uganda because the Christ, who was born, walked our world and died as a sacrifice, is alive". [16]

on the ministry of children and fools

Do children have a ministry beyond making the rest of us feel sentimental during church?

We often talk in our church about the "ministry of the baptized", meaning that we believe every baptized member of the church to have a ministry, a vocation.  In the backs of our minds this often becomes "when they grow up and can do real ministry".  But what if children have a real ministry, a real vocation, within the body of Christ now? 

It is a subject which has been on my mind for a while - the ministry of children and fools.  Partly it also comes out of my association with people with intellectual disabilities.  I sense that there are two parts to their ministry (as there are two parts to mine).  First is the broad ministry of presence:  a more complete gathering of the body of Christ.  But I find myself, and sometimes others, seeing their ministry as only a ministry of presence - a passive ministry by which they evoke certain responses or reactions in those around them, in those "regular" members of the Church.  And perhaps for some that is the ministry to which they are called.

But what if they are called to other, more "active" ministries?  The ministry of prayer comes to mind immediately.  In our tradition, we have certain "intercessors" lead us in prayer each week, leading the "prayers of the people".  What would happen if we discerned and encouraged, say, our children, to lead us publicly in prayer.  And not in some sentimental sense of look-isn't-that-cute - now let's have someone pray whom God will really listen to.  What if those in our midst with disabilities were encouraged in ministry beyond-evoking-feelings-in-us?

Just a thought.  And in case you are wondering who the fools are...

why my guitars are always out of tune...

budding musicians...

you know, before I had kids, I would not have let my best friend touch one of my guitars.

how things have changed...

After making the announcement about Bishop Victoria's new direction this morning, I was reflecting on a time about 6 years ago.  SJ was suffering from congestive heart failure in the womb;  and Bishop Victoria spent time in prayer with our family, and with Alisa.  They prayed the Magnificat together.

My soul doth magnify the Lord : and my spirit hath rejoiced in God my Saviour.
For he hath regarded : the lowliness of his handmaiden.
For behold, from henceforth : all generations shall call me blessed.
For he that is mighty hath magnified me : and holy is his name.

And his mercy is on them that fear him : throughout all generations.
He hath shewed strength with his arm : he hath scattered the proud in the imagination of their hearts.
He hath put down the mighty from their seat : and hath exalted the humble and meek.

He hath filled the hungry with good things : and the rich he hath sent empty away.
He remembering his mercy hath holpen his servant Israel : as he promised to our forefathers, Abraham and his seed, for ever. 

Thank you.