On World Down Syndrome Day Portia Clark speaks with Edmonton author Theresa Shea. Her book, The Unfinished Child tells the story of three women faced with difficult moral choices around motherhood.
1. If you could have coffee with any 3 authors, living or dead, who would they be?
That’s a hard question, and I think my answer would change daily. However, for today, the three authors I’d love to have coffee with would be John Steinbeck, Flannery O’Connor, and George Eliot. (Can I add Charles Dickens?) I’ve always been fascinated by fictional depictions of human suffering. I remember taking a course in Victorian Literature and just devouring the books that described characters living in squalor and poverty during the Industrial Revolution. The women had large families and no birth control. The midwives came in the front door and the undertakers went out the back door.
I remember reading The Grapes of Wrath and just bowing my head at the moving descriptions of the characters, their motivations, and their sheer desire to carry on. Of Mice and Men also made me take a seat. That’s true brilliance. The strange and whacky characters in Flannery O’Connor’s fiction are wonderfully eye-opening. Yet whether they’re religious fundamentalists of intellectual atheists, they all have their epiphanic moments when grace is accessible to them. That transforming moment is hugely powerful, and O’Connor handles it masterfully.
As for George Eliot, Middlemarch and The Mill on the Floss stand out for me. In the latter, Maggie Tulliver’s headstrong desire to BE something gave me goose bumps. Her life choices were so restricted; is it any wonder she deviates from conventional behaviour to seek her dreams?
Oh, there are so many books I could list. What I always respond to is the emotion. I want to be utterly moved when I read a book. I want to care about the characters; in so doing, I can imagine myself in his/her situation and question my own beliefs. I’d like to think I’d make admirable decisions when placed in a difficult position, but do I really know? Being moved is an educational experience for me.
2. If you could only take one book, food item and drink with you to a deserted island what would they be?
Maybe the collected works of Charles Dickens. Does that even exist? It would be a huge book. Basically, what I’d want is something that I could read over and over again and get different meanings from it. The Bible suits that requirement, for sure. As for food, it would have to be some bread item. My beverage of choice would, bar none, be coffee. I love my coffee.
Amy Julia Becker
As the parent of typically-developing children, what prompted you to write the book? Do you see any parallels between your experience as a mother and the mothers included in these pages?
Like many women today, I didn’t start my family until I was in my mid-thirties. To be honest, I didn’t fully understand that I was in a high-risk category because of my “advanced maternal age.” I felt young, and I was healthy, but because I would be thirty-five when my first child was born, I had the big red RISK stamped on my file.
In hindsight, I can see how unprepared I was for the ethical dilemma of prenatal testing. Here in Canada, doctors are required to give women who are thirty-five and older standard genetic counseling. I remember listening to the doctor’s facts and figures and nodding in all the right places. I remember extending my arm and allowing the doctor to take my blood. I never thought anything would come of it.
The phone call came on a Friday afternoon. I was working, so by the time I got the message to call the doctor’s office, it had already closed. My husband and I spent the weekend in a distressed state; I was convinced something was wrong with my baby.
On Monday I went in to the doctor’s office. The alpha-fetoprotein test had shown I had a 1 in 268 chance of having a baby with Down syndrome – that number was higher than normal and of apparent concern. I was informed that the next step was to have an ultrasound to determine if my dates were correct and to look for some soft “markers” that might indicate the presence of Down syndrome. (The scene in the book where Marie asks the ultrasound technician to do a very thorough examination comes directly from my personal experience.) Since both the blood test and the ultrasound are not reliable indicators, however, the doctor offered the option of amniocentesis.
In the end, my husband and I decided that entering parenting with such a large degree of fear was not the right course of action for us. We declined all other testing, sought the services of a midwife, and stopped going to the doctor. The process showed me that doctors, because of litigation issues, are too often forced to look for what might be wrong with a pregnancy. Midwives, on the other hand, tended to look for what was right.
My husband and I went on to have two more children, and we didn’t have any testing. We were moral cowards of a sort, but that felt okay to us, and we went with that decision.
But the fear had been planted, and I was angry that my pregnancy had been “ruined” by a seemingly innocuous blood test. It got me thinking that in the history of human reproduction, the children born in the 1960s and after are really the first to grapple with prenatal testing and the decisions that accompany those tests. Previous generations, for better or worse, simply took the children they got.
I began to think about all the women I knew who were going through similar experiences in having their children “late.” I watched couples I knew wait long days for their amnio results to come back. I heard stories of friends who’d terminated pregnancies based on the result of their prenatal test(s). I listened to stories of women who returned repeatedly to fertility clinics in the hopes of having biological children. And I read fantastic headlines in newspapers that proved truth is stranger than fiction (“Mother Gives Birth to Son’s Baby”). Yes, there was a story to be told, and when my second child was six months old I began to write The Unfinished Child.
Amy Julia Becker
How did you come up with the title The Unfinished Child?
Originally, I had another working title for the book, but one day I came across an article in a medical journal that explained doctors used to call babies born with Down syndrome “unfinished children” because it was believed that their bodies hadn’t fully developed in the womb. Right away I thought – there’s my title.
For me, the title resonates on so many levels. The unfinished child can refer to the baby with Down syndrome or the baby that is terminated. On a more abstract level, it refers to everybody, for I often wonder if any of us are every really “finished.” Aren’t we all a work in progress?