Posts Tagged ‘Amy Julia Becker’

Prenatal Testing: Insight from Moms

February 5, 2013 in Diagnosis, Emotions

Amy Julia Becker’s recently released book, “What Every Woman Needs to Know about Prenatal Testing,” explores new advances in prenatal testing technology, the ethical implications of testing, different reasons for testing, and how prenatal testing impacts the author from a faith-based perspective. Amy Julia is also the mother of a daughter with Down syndrome and the author of “A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny.”

Amy Julia’s target audience for “What Every Woman Needs to Know about Prenatal Testing” is pregnant women who have not yet undergone prenatal testing or those who plan to start a family. She explains the range of prenatal tests for Down syndrome (and other conditions) in language that is easy to understand and then explores the reasons why different women may or may not choose to take tests. The approach is informative and balanced — exploring the different practical and ethical issues at hand.

Author Amy Julia Beckers says:

“All pregnant women will be offered the option of prenatal testing. As a result, all pregnant women face a series of personal and ethical questions about those tests. This book is designed to help women navigate the testing process by considering three questions–what is prenatal testing? what information does it offer? and what information do I want, and why? Women who have already started down the road of prenatal testing can benefit from this book in that it offers resources to think through the role of disabilities within our society and the possibilities for considering a good life for children with disabilities. There is plenty of medical information out there about prenatal testing, but this book is designed as one mother talking to other mothers and potential mothers about the questions that matter most to us as we prepare to welcome our children into the world.”

We also appreciate that Amy Julia refers to both Down Syndrome Pregnancy and Lettercase as suggested resources for women who are undergoing testing.

Amy Julia has followed up the release of her book with a series of blog posts from women sharing their different perspectives on prenatal testing, including one from our “Diagnosis to Delivery” co-author Nancy Iannone:

I Regretted My Amnio by Meriah Nichols

Why I Wish I Had Chosen Prenatal Testing by Patti Rice

What do you think? Are you grateful that prenatal testing allowed you to prepare or do you wish you hadn’t found out?

A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

December 31, 2011 in Book

A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
by Amy Julia Becker
Book review by Nancy McCrea Iannone

Many of our expectant parents grapple with the grief of a Down syndrome diagnosis. Our visions of our child are shattered, immediately replaced by an image based on whatever we think we know about Down syndrome. With time, and influenced by smiles, giggles, and hugs, that image dissolves, allowing us to see our children for the individuals they are.

Along the way, we often navigate some difficult adjustment terrain. Why has this happened? Why us? Amy Julia Becker delves into these questions and more. Why does her child have Down syndrome? Is it to teach the parents something? Isn’t that a high price to pay on the child’s part? She presents these questions so eloquently, yet her perceptions change as Penny’s personality exerts itself, as her medical possibilities fade.

Often we as parents interact with the world using an external dialogue to help us maintain control, and an internal monologue to express the panic. Ms. Becker’s thoughts are deep and private, taken from a personal journal, the things we never really share with the people around us. She deftly and gently recounts the comments from others that leave her hurt, but does not spare herself from critique, questioning her own preconceived impressions and biases.

When Ms. Becker hears comments intended to comfort, such as, “She’s not really that different” her brain protests: “They hadn’t cried in the hospital. They hadn’t come home with information on support groups and questions about life expectancy. They didn’t need to report back for a blood draw on the fifth day of their baby’s life. They didn’t have the pediatrician calling daily, just to check in.” Yet verbally she keeps her game face on: “We’re okay. She’s healthy and we’re happy and it’s all good.” She doesn’t share the fear.

While comments “normalizing” her experiences are met with mental protest, comments making Penny’s birth a tragedy also trigger painful internal monologue. At first this reaction seems a resistance to pity, but as Penny grows, it is much more about Penny herself. When faced with intrusive questions over prenatal testing of a subsequent pregnancy, Ms. Becker reflects, ” I wanted to . . . shake her. I wanted to force her to spend a day with Penny, to watch as Penny told me what she did at school, and the names of her friends, and what she would like for her afternoon snack.”

Ms. Becker is forced to look at her own life, particularly on her focus on and appreciation of intellect. Unlike her sisters, she had never been involved with people with disabilities. Early on the Down syndrome diagnosis seems like something that happened to their daughter, separate, apart, negative. These thoughts evolve: “To take away Down syndrome would be to take away my daughter.”

It may be difficult for our expectant parents to see their children and Down syndrome this way. You have not walked the path Ms. Becker has walked – not yet. But reading this book will bring you the hope that you will be there some day, not reading about someone else’s transformation, but reflecting on your own. You may see much of yourself in Ms. Becker’s book. Though an exploration of her faith is an important part of her story, a parent does not have to share her faith to gain perspective from reading this thoughtful, eloquent story of self-reflection and growth.

Purchase the book:
http://www.amazon.com/Good-Perfect-Gift-Expectations-Little/dp/0764209175/ref=sr_1_1?ie=UTF8&qid=1319744742&sr=8-1

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