“The Unfinished Child” by Theresa Shea: If ever there were a book club book . . .

Sometimes when discussing books either in writing or at book clubs I am reminded of some seminars in university in which we students shared our writing with each other and then were expected to sit about critically discussing the bits of paper.  Preparation for disertation defences, no doubt. But professors were constantly and obviously annoyed and frustrated by our timidity: “There’s a typo on page 4 . . .”, etc.  While there is at least one typo in The Unfinished Child by Theresa Shea, I have left University far enough behind that I will happily ignore it and move to more substantive issues (few) and praises (many).  But I must be careful to avoid spoilers, as the narrative is quite clever and enthralling, with unexpected and expected meetings.

I’m tempted to suggest that in a nutshell The Unfinished Child is about Motherhood, but, that description is at once too wide and too narrow, and wide and narrow on a few different axes.  The novel specifically confronts motherhood of a child with Down Syndrome, but, in fact, very little time is spent depicting motherhood of such a child beyond pregnancy and birth. There are scenes of Marie and her two “normal” daughters, but the prospect of being a mother (or father) to a growing, developing child with Down’s Syndrome is left to the imagining of the characters and to our own imaginings. The Unfinished Child also touches on other relationships of family and friendship, but motherhood and parenthood in general are at the centre of the discussion — Discussion. It is this discussion that I think is the heart of The Unfinished Child‘s power.

The Unfinished Child is, to my mind, a “discussion novel” like some of my favourite novels of H.G. Wells, an author sadly remembered most for his ripping youthful science fiction novels and his turgid The Shape of Things to Come.  I firmly believe that if people today would read Wells’ late novelettes and non-fiction of disappointment and tethers’ ends the future would look brighter. And if they read discussion novels, novels which like Well’s The Passionate Friends or Ann Veronica, or, yes, Shea’s The Unfinished Child, some very deep and still ignored societal issues would go through a crowd-sourced discussion which might bring a more liveable future of well-examined lives.

Parenthood and Motherhood, along with Marriage (the title of another of Wells’ discussion novels) and Friendship are all near the heart of The Unfinished Child‘s discussion.  But the very heart of the novel is precisely the questions, problems, doubts, pain and, indeed, ignorance surrounding being mother to a child with Down Syndrome, or for that matter, a child with any disability, physical or intellectual.

The title of Shea’s book refers to the antiquated medical idea that a child with Down Syndrome is, for some reason, developmentally arrested at an unfinished state, an understanding shown to be clearly inaccurate by events — one in particular — in The Unfinished Child: Carolyn, the young girl with Down Syndrome, is obviously not arrested in her physical development.

Disclosure 1

As a parent of a now young-adult with both physical and intellectual disabilities, I feared that The Unfinished Child would be a preachy lecture on the wonders and joys of parenting a child with Down Syndrome. (Don’t antice the book!) Over the years, I’ve gotten to know quite a number of young people with Down Syndrome and their parents.  I have seen the entire spectrum of physical, intellectual, and behavioural limitations and challenges that may come with that extra bit of chromosome.  Thankfully, The Unfinished Child is an insightfully sensitive presentation of the difficult, impossible, heart breaking and sometimes rewarding challenges of what most soon-to-be parents never allow themselves to consider.  I am so grateful that Shea left the questions asked but unanswered, the problems presented, but unsolved.  The Unfinished Child is the beginning of the discussion, not a conclusion.

Back to the book. . .

The Unfinished Child moves back and forth between two converging stories, in a way somewhat reminiscent of  The Hours by Michael Cunningham. In 1947, Margaret’s water breaks at the end of her first pregnancy.  And, in 2002, Elizabeth, who we soon find out seems to be infertile, and her friend Marie, who is remarkably fecund, meet for dinner on an Edmonton winter evening. And back and forth. We see the warehousing of the disabled in the 40′s, 50′s and 60′s (and beyond?) contrasted with the fertility — and prevention of fertility — technologies of today.  The moral challenges of modern choice contrasted with the horrific disappearances of previous generations of the disabled.

The converging plot is very cleverly constructed and the moment the reader recognizes the connection between past and present (it struck me on page 128) is startling and satisfying. Somehow the convergence is perfectly foreshadowed by the author and yet completely unanticipated by the reader, and so, feels perfectly right when the juncture comes.  On the negative side, toward the end of the book there is another juncture, a meeting, which seemed to me a touch too coincidental — of all the flower shops, in all the towns, in all the world, he walks into mine. But the dissatisfaction with that coincidence quickly fades as the pieces fit so well again.

The closest The Unfinished Child comes to the preaching I dreaded — and it’s not very close — is in the words of an aged Down Syndrome specialist, Dr. Maclean, who, troubled, comments that he wonders whether the modern prevalent choice of parents to terminate Down Syndrome fetuses is not a new eugenics. My honest response to Dr. Maclean is that, of course it is a modern eugenics, but the real ethical dilemma is, despite the eugenic horrors of the 20th Century, where the correct moral course lies between always letting the genetic dice fall where they may, no matter our technological abilities, and, on the other horn, always using our technological abilities to ensure that parenthood is as easy as possible. The Unfinished Child, in the nearly identical agonizing decisions of Margaret and Marie, points out the dark attractiveness of making a problem disappear, and the truth that there is no easy choice.

It is here that the true honesty of Shea’s novel is highlighted: motherhood, parenthood, friendship, relationships of all kinds are hugely messy difficult beasts — why would we expect the prospect of parenting a child with a disability — or any child for that matter — to be a bed of roses, or, to use one of Shea’s most felicitous phrases, “a playground with enough swings for every child”?

In the end, Shea’s characters, Margaret, Elizabeth, Marie and all the others make their choices — with varying degrees of freedom. None of the choices are easy. None are right or wrong. None are made without regret. All are decisions we as a society need to be discussing. And never do the characters or the narrative become bogged down in the discussion: The Unfinished Child, although a discussion novel, never forgets to be a Novel and not just a discussion.

I realize I’ve said little about the actual story, but I truly feel that almost any revelation of plot details beyond the jacket blurb would spoil things. Suffice it to say, Margaret has a baby with Down Syndrome in 1947 and navigates the society of the time in the limited way allowed to her. Marie finds herself pregnant by surprise when almost forty years old and confronts the prospect of parenting a child with Down Syndrome at the beginning of the 21st Century.  And Elizabeth struggles with her own infertility in the face of overwhelming desire and external pressure for motherhood.  And, as the story progresses, the lives of the three women are shown to be intertwined through the tragic figure of Carolyn, Margaret’s daughter.  And, as so often in real life, there is no magical happy ending, only choices made.  And so often the choices made by each generation, despite changing technologies, remain the same.

The Unfinished Child is Theresa Shea’s first novel, but shows little evidence of a fresh(wo)man effort.  Despite a very few brief weak passages, the writing is solid and the characters believable and clearly drawn.  I was, perhaps perversely, annoyed by a pair of botanical errors of no real consequence that I would have hoped an editor should notice. On the whole, The Unfinished Child is a most worthwhile, enjoyable and challenging read. The vitally necessary discussion it must spur is a valuable added gift. I expect a large number of neighbourhood book clubs across the country will have unusually lively, thoughtful and at times sombre discussions in the coming year or two.

Disclosure 2

Theresa Shea has for some years been my neighbour, and, in our neighbourhood, “neighbour” very often quickly comes to mean “friend”, whatever the differences of experience, opinion, or language. So, I confess, the above discussion is about a friend’s first novel.

I do, however, feel comfortable if not in my impartiality, in at least a certain degree of compensatory hypercriticality in my approach.  When discussing The Unfinished Child with others as I read the book, I was often warned that I was being far more severely critical than normal, both in what I was reading and what I expected to come next. (“Don’t antice the book!”)  To conclude: if my hypercriticality had not been overcome by the genuine qualities of The Unfinished Child, I would have simply remained silent about the book.

The Unfinished Child is published by Brindle & Glass and will be available at the beginning of April, 2013.

Oh.  The typo is on page 128.

I didn’t know what was going on . . .

When I was a little kid in the sixties, my aunt worked for the government.  Now, that aunt is lost to Altzheimer’s, but I’d love to ask her some questions.

When I was a little kid I went to see my aunt on Parliament Hill.  As I remember it, on that same day I had the mythical experience of seeing Prime Minister Pierre Trudeau skip down the stairs outside the Peace Tower.

When I was a little kid in Sudbury, Ontario, I watched Chez Helen and Adventures in Rainbow Country on television.  I ran through the bush pretending to be Pete and in grade four I started learning French.

One summer I rode north with my parents on the Polar Bear Express to Moosonee and Moose Factory on the coast of James Bay.  Pretty much all I remember is crossing the water with the Cree boatmen. The colour of my memory is National Geographic Magazine Kodachrome.  I can hear the sound of the outboard motors in my mind.

Not terribly many years later I learned about the history of World War Two. I watched Jacob Bronowski on television, walking into a pool of water at Auschwitz and reaching down to pull up a handful of mud containing the ashes of his relatives. And I learned that the people living near the Camps claimed they never knew what was going on behind the barbed wire. Like so many around me, I didn’t believe that claim. How could they not have at least a clue?

Still later I learned about the horrors of Canada’s Indian Residential Schools. I realized that Buckley Petawabano, who played Pete on Adventures in Rainbow Country, had not enjoyed the childhood I’d had, running through the bush feeling at one with the earth, paddling a canoe on Lake Ramsey and diving down to the cold depths to find archaeological treasures of childhood. I came to realize that when I visited the reconstructed St. Marie Among the Hurons, that lady in the film acting the part of a small pox victim was likely the actual survivor of something as terrible.

My reaction to the horrors I’d learned of Brebeuf’s death by torture were  somehow softened by the horrors inflicted on children by the government of my country.

Still later, I learned that my aunt who worked for the government had preceded me to the shores of James Bay. My mother thinks her sister had something to do with Indian Affairs and the Residential Schools, but it’s unclear what that something was.

In abject humility, I swear, I didn’t know what was going on behind those walls.

But I also swear, by all that is holy and sacred on this green Earth that I will never forget the victims and the horror. And I’ll do everything I can to make sure every other Canadian knows, remembers, and never forgets that our country, so wonderful in so many ways, attempted genocide, and the effort continued well into my lifetime — and we didn’t notice!

Please go to the Truth and Reconciliation Commission webpage and learn the Truth, and read the reports available there for download, and do whatever you can to further Reconciliation with the survivors and remembrance of the children.

A little waste-saving trick

Do you use a lot of glue sticks in your art or design work? Are you a scrap-booker? Or maybe you just have a kid who’s an obsessive-compulsive gluer.  Well, here’s a little trick that saves a bit of waste and a tiny bit of money.

I use the generic 20 gram sticks from Staples, but this will probably work with any size or brand.  When the stick gets down to the little plastic ring, I used to just throw it out, but for a while now I’ve been hanging onto them until I have four or five that look like this:

IMAG0583

When I’ve got a few “empty” sticks, I sit down with an ordinary kitchen knife, stick it into the bit of glue that’s left and unscrew it from the plastic cup it’s in. The cup is reverse threaded, so you turn it clock-wise to remove the plug of glue. The first time I did it I was pleasantly surprised, and more than a little annoyed at the waste,  to find more than a centimetre of perfectly good glue that was designed to be discarded.

IMAG0584

Now I choose one of the sticks to be the re-manufactured one.  I turn the cup down a bit, tuck the plug of glue in, and press it down with the knife, massaging it a bit to fill the voids of the screw thread.  Then I repeat until the re-manufactured stick is full.

IMAG0585

I find that four or five “empty” sticks can become a full stick with about three minutes of simple effort.

If your activities involve a lot of gluing and you’re concerned about waste, this little trick can give you a nice little feeling of satisfaction and maybe save a tiny bit of money.  I mean, why buy a half dozen glue sticks and just throw one away unused?

Adventures in Alberta’s Public Health Care System: A True Story

I wasn’t going to do parenting (special needs or otherwise) or politics when I started writing from behind my hedge, but . . .

All this in less than 36 hours:

Yesterday morning, I finally accepted that that inexplicable ulcer on the Kid’s ankle wasn’t going to heal any time soon without Modern Medical Intervention, so, I decided, no school today, let’s go to the clinic across the Ravine.  We arrived a little past ten in the morning and . . .

no other patients in the waiting room.

About ten minutes later, we were on our way to the pharmacy to pick up the prescription and the doctor was on the phone to the Wound Care Clinic at the Firefighters’ Burn Centre at the U of A Hospital arranging a referral for us.  Shortly after, prescription in hand, we were driving across town to drop in on a friend (former nurse and EMT, now butcher) when my phone rang.

“Can you get to the Wound Clinic right away?” asked the doctor’s receptionist.  “They say they’ll see you right now.”

After a quick visit to our friend, we went on to the U of A and found out there had been a mis-communication:  the doctor was in the OR and couldn’t see us for two hours.  We got the usual for lunch, a grilled cheese sandwich on brown, from the Hospital’s food service.  With time still to kill, we hopped on the LRT for a ride, something we had planned to do after the initial visit to the local clinic.

To Clairview and back and then back up to the third floor  to the Wound Clinic.  About 45 minutes later, we were on our way with a newly cleaned and dressed ulcer, a huge collection of dressing materials, and an appointment with a dermatologist for today at 11:30 and a referral to another surgeon in two weeks.

Today we went to the dermatologist who gave us a new prescription for the kid’s auto-immune thing and he took her on as his patient.  Then he arranged for a referral to Home Care for her dressing changes twice a week.  Then to the lab for a blood test and later this afternoon, Home Care called to set up the dressing changes and they also started setting up an assessment for her for any other needs she might have.

So.  Thirty-six hours. A family physician, a plastic surgeon, a dermatologist, a number of residents, a referral to another plastic surgeon, countless nurses (“Katharine was nice”, the Kid told me as we left yesterday),  home care, huge sacks of medical supplies, four prescription drugs, blood test  . . .

and . . .

total out of pocket expenses:

about thirty bucks for parking and lunch and two transit tickets.

Family Doctor: no charge
Specialists: no charge
Nurses: no charge
Residents: no charge
Supplies: no charge
Blood Test: no charge
Prescription Drugs: no charge (thanks to AISH)

In the current election campaign here in Alberta there’s been a lot of talk about our Health Care system being broken.  I’m sure there are problems.  I’m sure people have bad and sometimes horrible experiences.  But I want to be on the record with the fact that for eighteen years now the Kid has had consistently amazing treatment from Alberta’s Public Health Care System.

If this is a broken health care system, let’s fix it.

Then maybe we’ll all live forever!

I also want to mention, there’s a beautiful display of Aaron Paquette’s artwork (see my blog entry on Narrative Quest) on the third floor north of the Wound Care Clinic.  Anyone who’s in Edmonton and appreciates art owes it to themselves to head over the the hospital and ride the elevator up to the third floor.  But watch out for the rightmost of the South elevators — it bites!