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Amy Julia Becker: It's no mistake, Penny is perfect

The author of ‘A Good and Perfect Gift’ talks about rethinking perfection and other lessons she’s learning from Penny, her daughter with Down syndrome.

Photo courtesy of Amy Julia Becker

February 7, 2012

Amy Julia Becker always knew she was a classic perfectionist. To her, perfection was about things that could not be improved upon, that could never break down.

But six years ago, when her daughter Penny was born, Becker had to rethink perfection -- and much else that she had built her life upon.

“A family who has a child with Down syndrome is antithetical to the idea of the perfect family in America,” said Becker, the author of “A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny.”

From Penny, Becker learned about a different kind of perfection, one rooted in telos -- in wholeness and completion.

“That is a type of perfection that I can want for myself and my family, because it is a perfection that allows for weakness, for dependence on other people, for need and for giving and growing,” Becker said.

It’s just one of the many lessons that church leaders can learn from Penny and other people with disabilities, she said.

Becker is a graduate of Princeton University and Princeton Theological Seminary and blogs regularly for Patheos at Thin Places. In addition to “A Good and Perfect Gift,” named one of the top 10 religion books of 2011 by Publishers Weekly, Becker is also the author of “Penelope Ayers: A Memoir.”

She spoke with Faith & Leadership about “A Good and Perfect Gift” and how Penny has changed her and her faith. The following is an edited transcript.

Q: “A Good and Perfect Gift” covers basically the first couple of years of your daughter Penny’s life. Give us an update. How is she doing?

She’s doing very well. She is 6. She goes to kindergarten and is in an integrated classroom, so she’s with a group of typically developing peers and has a great time. She’s learning to read and write, and she’s a wonderful big sister to her brother, William, who’s 3, and her sister, Marilee, who is a year old.

Q: The book is at least ostensibly about Penny, but in many ways it’s about you and how Penny changed you. Tell us about that.

It is more about me than Penny. The book is about realizing that although we had not been given the daughter we expected, we had been given the daughter we wanted. There was a long progression for me -- spiritually, emotionally and intellectually -- after Penny was diagnosed with Down syndrome.

I had to confront some ugly truths about myself and what and who I valued and why. I really did have an implicit understanding that education and intellect were more valuable than anything else that makes someone human. I wouldn’t have said that I believed that, but I discovered that that was true about me.

So I had to confront that and recognize that what I had believed was not in fact true, which in the end was freeing and life-giving. It allowed me not only to receive our daughter as a gift but also to receive many other people who are different from me in a variety of ways and to recognize the value that they have as human beings created in God’s image.

One of my joys and challenges is encountering people and looking not only for what I have to offer them but also what they have that I need. That’s been transformative not only in terms of accepting and embracing our daughter but in transforming my whole view of the world and of how God works through people.

Q: One of the most powerful lines in the book is in the section about Penny’s baptism, where you write: “I was wrong. For so much of my life, I valued the wrong things or I valued them in the wrong way.”

I realized it wasn’t wrong for me to enjoy reading and writing and learning. I’ve always been a bookworm and someone who loves school, and that’s fine. But it is wrong if I think that that is how everyone else should be and the most important thing in life.

It’s not fine if I keep that as a measuring rod for other people or as an ultimate value instead of a deeper understanding of what it means to love and receive love from one another.

In our culture, it is easy to create an identity based upon intellect or financial success or power. But if our identity is grounded in those things, we’re going to find ourselves failing at some point. We’re never going to be able to live up to our own standards, and at a certain point, we’re literally not going to be able to continue to accomplish those goals.

But if our identity is based upon love, on the fact that God loves us for who we are, apart from what we do, then we can explore the things we love and find a deeper enjoyment from them.

Q: Closely related, of course, is the notion of perfection, which also runs throughout the book, even in the title. What did Penny teach you about perfection?

A lot. I have known for most of my life that I’m a classic perfectionist. I would have said as a Christian that I shouldn’t try to be a perfectionist, but I still had some sense of what the perfect Christian would be -- über-spiritual, able to interact with God independently, all on my own, rather than having a relationship with God that inherently includes vulnerability and a need for God and other people.

Having Penny, this baby who by the standards of our culture would never have been deemed perfect -- and yet recognizing the ways in which she was so similar to me and to every other baby -- made me rethink perfection.

I write in the book about a moment when a student called us the perfect family. A family who has a child with Down syndrome is antithetical to the idea of the perfect family in America.

Later, I remembered that verse from Matthew 5 where Jesus says, “Be perfect as your heavenly Father is perfect.” I looked up the word and saw that in Greek, “perfect” comes from telos, which really means wholeness and completion more than perfection.

When I think of perfection, I think of something that can’t be improved or ever break down, like a perfect car. I think of it more in production terms and not in terms of wholeness, completion.

So “be perfect as your heavenly Father is perfect” -- thinking about that in terms of being who you are created to be -- means to be one who is becoming whole, complete, mature.

That is a type of perfection that I can want for myself and my family, because it is a perfection that allows for weakness, for dependence on other people, for need and for giving and growing.

Having that new understanding of perfection, both for Penny but also for me, has changed me and helped me recognize that I do have limitations and I need to pay attention to them.

Q: Early on, after Penny was born, you struggled with the notion that Down syndrome was some kind of mistake.

It was a big question for me, because I know that, on a biological level, Down syndrome is at least an abnormality. Whether or not scientists would call it a mistake, many others would for sure. Then I wondered if, theologically, Down syndrome was a mistake.

I thought about this idea that the whole of creation is fallen, and I wondered whether Down syndrome was a particular demonstration of that fallenness and the brokenness that exists within our bodies. But that was making Down syndrome akin to cancer or other ways in which our bodies break down.

Down syndrome was present from the moment of conception. And as I learned about and met people with Down syndrome, I saw that Down syndrome was not all bad. There were things that could be difficult and provoke suffering because of having Down syndrome, but that was not largely the experience of families or individuals with Down syndrome that I got to know.

I realized that the things that are wrong with this world all have to do with separation -- separation from God, ourselves, other people. There are aspects of Down syndrome that separate Penny, and those I’m willing to say are mistakes, are products of sin or fallenness, whatever words you want to use.

But I’m not willing to say that about Down syndrome as a whole, because there are other things about Penny that are beautiful, life-giving and joyful.

In the hospital after Penny was born, I was wondering whether I saw any evidence of sin -- that’s the way I put it -- in the fact that Penny had Down syndrome, and my mom said, “The only evidence of sin I see is in how we respond to her.”

She flipped the question. I kept looking for Penny to be changed. I wanted this extra chromosome to be taken away instead of allowing her to change me, and to change me in such a way that my view of humanity made room for a much larger group of people.

I had been grieving the loss of a hypothetical child. There was a real grief process. There often is after people find out that their child has Down syndrome.

But when you come to that place of acceptance, it’s not the same as losing an actual child. On the other side, there’s no loss. There’s just a recognition that the child you have is the child you always wanted. It just took you a while to get there.

Q: Years ago, I heard Stanley Hauerwas on an panel for The Arc say that the biggest difference between parents of children with developmental disabilities and other parents is that they find out a whole lot sooner they didn’t get the child they wanted.

I love that! I so resonate with that statement. I told someone recently that disability is God’s magnifying glass for humanity, because all it does is make things more obvious that are true about all of us.

Having a child with Down syndrome, at least in the early years, is like parenting on steroids. It’s the same; it’s just amplified.

All of us have implicit expectations for our children that are not met. To the degree that we can help to guide them into the sons and daughters who they were meant to be -- instead of the sons and daughters who we want to force them to be -- it will be better for everyone.

Q: What can institutional leaders, particularly leaders of church and church-related institutions, learn from people with disabilities?

There are a couple of lessons.

One, if churches mean what they say theologically, then there is an important place for people with disabilities within the body of Christ, not simply as those who need the service and care of the rest of the community but also as ministers in their own right.

Any church leaders who don’t have people with disabilities in their congregation need to ask why. Is it because we don’t have an accessible building or Sunday school teachers who will talk to parents of kids with disabilities and figure out how we can incorporate them into the classroom?

And then once you do have people with disabilities, are they seen simply as people who need to be served by the church or as full members of Christ’s body, with both needs and gifts?

As Westerners, we tend to be pretty rational in our approach to God. People with disabilities can challenge us to expand the sensory, kinesthetic, emotional and intuitive experience of God, both in our worship and in our daily lives.

Q: What about leaders beyond the local church?

It might come back to the question of perfection. Yes, it helps to learn leadership principles. Yet it’s also important to consider how leadership within the church is meant to be different from leadership in the world.

That is a place where people with disabilities have a lot to offer. I think of the people who Jesus says are going to be at the table, at the heavenly banquet, and it’s not the leaders. It’s the poor, the meek, the lame and the blind, the people who you wouldn’t expect to be there.

So what qualities do those people have that leaders can learn, whether that’s humility or a sense of dependence on God?

Whether they mean to or not, church leaders are tempted to believe that they can accomplish a lot by themselves. People with disabilities, however, are forced to acknowledge that they need other people.

Having relationships with individuals with disabilities would help leaders not only see the dependencies of people with disabilities but also their own needs and dependencies, and ultimately, the interdependence and connection we all have to one another.

Being with any person or group that doesn’t think you are important because of how smart you are can help you stay grounded in that deeper identity. That can happen by just spending time with any 3-year-old.

My kids -- it’s like, if I’m in the middle of writing a glorious sentence and William needs his bottom wiped, well tough luck. I’ve got to wipe his bottom, and the sentence doesn’t matter.

That’s good. It reminds me that who I am is more than my mind and my writing.

That’s true for anyone, especially anyone in a position of power in our culture.

Q: You’re very candid in the book about the anger and confusion you felt after Penny’s birth. What did you learn about lament?

I was incredibly honest in my anger with God. In some ways the book was a long prayer, a long lament before God, and then the joy that often comes on the other side -- of trusting that God is big enough to handle the full range of our human experience, our anger, our doubt, our sorrow, as well as our gratitude, worship and delight.

Having Penny was not the first time I turned to God in sorrow, anger, confusion and doubt, but it probably was the most sustained period of that in my life. Yet God was faithful. It is human to ask “why?” whenever something unexpected happens, certainly whenever something hard happens.

I don’t think I ever got the answer to that question. I can’t say why Penny was born with Down syndrome, and I’m glad that I can’t. I’m glad that I don’t have this very clear answer, because that would make Penny into an object lesson instead of a person who really needs to be experienced and enjoyed as a full person.

Someone asked me the other day whether having Penny has strengthened my faith, and I said, “I don’t know. That’s not the word I would use to describe it. I would say that having Penny in my life has deepened my faith.”