A Table Big Enough For Everyone (and a giveaway)

My friend Amy Julia Becker has an excellent new e-book out called What Every Woman Needs to Know About Prenatal Testing: Insight from a Mom Who Has Been There.

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Amy Julia writes that her aim was “to write a nonjudgmental book to provide women and their partners with a way to think about prenatal testing before being offered it,” and, as unlikely as it may seem, I think she’s accomplished that, but she also acknowledges that she has a “very particular bias”:

“At the end of the day, I hope that many women will choose to continue their pregnancies even in the face of disabilities. I also hope that our culture will become one in which making that choice is more and more possible, with protection for families with children who have disabilities, including greater social supports, educational options, and health care provisions.”

What Every Woman Needs to Know About Prenatal Testing deserves to be read widely and carefully for many reasons, not least because Amy Julia insists that families facing troubling prenatal diagnoses need opportunities to connect with other families already living with children with those conditions–in other words, she points out the biases of medicine’s clinical context (ie. “here’s the test result and here’s what this means medically”) and the need for women and families to have support in a social (or whole-life) context (ie., “why don’t you meet our daughter who has Down syndrome and see what our life is like?”

She writes:

“Most medical school training comes in the context of hospitals, and as a result many doctors have experienced children and families with disabilities only in the midst of the stress and pain associated with hospital stays. Furthermore, doctors, by the very nature of their career, have devoted much time and energy to intellectual pursuits. For many physicians without personal relationships with people with intellectual disabilities in particular, the prospect of a below-average IQ constitutes suffering in and of itself.”

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One of my favorite things about this book is how (as in the above quotation) Amy Julia shows the limits of certain kinds of knowledge. Her prenatal tests all-but-definitively told her that her daughter would not be born with Down syndrome–and she was. Yet even as she struggled with fear and anger when Penny was diagnosed with Down syndrome at birth, she notes, “even in those early hours in the hospital, my anger and fear dissipated when I held Penny in my arms. The abstract concept of a negative diagnosis made way for the positive reality of a baby with round cheeks and an upturned nose, heart-shaped lips and big blue eyes.”

In my  own new book, Eat With Joy, I tell about a time when my family was invited to lunch at the home of some church members with intellectual and physical disabilities–aka, a “group home”:

As the only daughter of a pastor, I’d been to
a lot of boring, “let’s impress the Reverend with our piety” kinds
of dinners. This meal was anything but boring. Seeing adults who
needed help cutting and eating their food and even, in some cases,
who needed bibs was fascinating, if slightly uncomfortable for a
twelve-year-old. But mostly I remember a lot of laughter and so
much happiness that we had come over. [...] I can’t remember another meal where the
hosts were so overjoyed at our mere presence.

This comes in the context of discussing radically equal table fellowship as an essential characteristic of early Christian communities, the vestiges of which we see today in the form soup kitchens and food pantries. Sharing food with the hungry is still important to Christians, but

It is the rare group that—like the L’Arche communities
founded by Jean Vanier—regularly practices sharing
meals across the boundaries of social class, background and, in
L’Arche homes, intellectual capability. It’s precisely this kind of
sharing [this knowing-in-context!] that comes closest to Jesus’ ideal.

The vision of a joyful table where all sorts of people are welcome to feast and to fellowship and to flourish is the picture I have of the kingdom of God. It’s a picture that’s hard (maybe hardest!) to see on ultrasound screens or karyotypes, as Amy Julia so graciously (and, yes, nonjudgmentally, truly!) points out. If you are looking for this kind of hopeful picture, or facing frightening prenatal diagnoses, or wondering what questions to ask “before sticking out your arm” for a prenatal test, I urge you to check out Amy Julia’s new book (and for that matter, her older one, too!)

To enter yourself in a giveaway for a free copy of Amy Julia’s new book, please leave a comment (being sure to use your real email address.) Next week, I’ll pick a comment at random, and email the winner a digital copy of the book right away.

A Good and Perfect Gift

My fellow Her.meneutics blogger Amy Julia Becker has a new book, A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. It’s a beautiful book, a powerful and important book, a book to read, ponder, and discuss. At birth, Amy Julia’s daughter, Penny, was diagnosed with Down syndrome. The hopes and plans she and her husband, Peter, had for the baby suddenly changed, and Amy Julia found herself wrestling with big questions–why was Penny born with an extra 21st chromosome? Was it because of sin? Was because Amy Julia and Peter needed to learn some kind of lesson?

The book follows Amy Julia’s journey in the months following Penny’s birth as she gets to know her daughter in all her beautiful particularity and struggles against feelings she wished that she would never have: falling in love with her adorable newborn and yet crying over her. “I don’t want to cry over the birth of my daughter,” her journal from that time reads. As an outstanding student, Amy Julia had always placed a high value on the life of the mind. But loving Penny began to shatter her “idols”:

“I realized that I had always assumed it was very sad to have a child with mental retardation, or, for that matter, to be a person with mental retardation. But why? Why was that sad? [...] I realized that my real question had to do with goodness [...] in a God-created universe, what was good and not good in her? And was it any different from that which was good and not good in the rest of us?”

(Photo Credit Javier Delgado Esteban, CC license)

In time, wrestling with theological questions amid day-to-day life with her baby, Amy Julia makes some important realizations, among them, that her own achievements–like being a stellar student at Princeton–were not merely due to her own hard work. “My life wasn’t something I deserved,” she writes. “It was a gift.” Penny, too, is a gift, all of her, including that extra 21st chromosome (which, in time, Amy Julia and Peter come to recognize as fully a part of Penny, and something they wouldn’t change if they could). In time, the uniqueness of Penny herself–”delightful, charming, smart, wonderful Penny” erased Amy Julia’s lingering doubts and fears, making way for their family, together, to “learn what it meant to be human, what it meant to be whole.”

(CC license)

Recently I’ve been thinking a lot about the parable of the great banquet in Luke 14:

“He said also to the man who had invited him, ‘When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you.”

Jesus was happy to link arms with disabled people–people that others of his day feared as perhaps being under some kind of curse because of sin–and call them his own. He was happy to touch them and eat with them. But he doesn’t say do the same because they need it. No (though they probably do). Rather, he says do this and you will be blessed.

Maybe, weakness, disability, and other forms of brokenness frighten us because they make us aware of the parts within us that are not quite whole. What I take away from Amy Julia’s book is that we can’t become whole without embracing difference and brokenness (including our own brokenness) not just intellectually, but around the table, sharing bread; living and loving and receiving one another–even and especially those among us who are different–as the good and perfect gifts we are.

Because “the more we receive Penny, the more we welcome her, exactly as she is, the more we welcome God’s work in our lives.”

(photo credit: Faso Productions--CC license)

{I’m delighted to be posting this as a part of the Patheos Book Club!}