A Good and Perfect Gift: Review by Meriah Nichols

This is why I like Amy Julia Becker: she takes a complimentary comment ("What a perfect family") - holds it up to a biblical lens "Be perfect, therefore, as your heavenly Father is perfect", reflects on it then whips out her Greek dictionary (she has a Greek dictionary!!! who has a Greek dictionary?!!) and discovers the root of the word, perfect: telos. Translated, it can be as she discovers, "perfect" or it can be "wholeness, completion, the end for which you are created."

A Good and Perfect Gift. A gift of wholeness, of completion, the gift of her daughter, Penelope, who was gifted with an extra chromosome.


Amy Julia is an honest examiner with a clean poetic bent. She infuses the house of her Faith with huge blasts of spiritual air, gulps of (sometimes painful) self-reflection and a relentless pursuit for truth. Finding the core of the matter.

I cried when I read parts of her book. I don't want to be a spoiler yet I want to talk about the things that she wrote of that had me up all night. Like wrapping her mind over and around the term "mental retardation" - and what that meant - or didn't mean. Or disability. Or Jesus' call to "follow me where you do not want to go" - and what that would mean. how I still well up reading certain lines like that "this delightful daughter of mine was going to endure a list of things that I wold never choose for her." Big, huge tears rolled with that one...

I loved the frank and fearless way Amy Julia recounted her feelings regarding the "encouraging" things people said she could look forward to with a child with Down syndrome ( like, um...that they could take the bus to work alone or be a dishwasher - YAY!) and led us through to what really brought her a measure of comfort - stories of people with Down syndrome who might teach her to "slow down, to love deeply, to compete less, to live more fully - these are the stories that bring hope."

She scrutinizes that same hope. Fear. Investigates the "soft bigotry of low expectation." Mulls over concepts of beauty and our culture. Faith. Amy Julia is an analyzer and let me tell you: she takes the scalpel and dissects faith. She is a hard-thinking Christian, the kind that I (not being Christian), most thoroughly enjoy.

This book will is a must for all Christians - but perhaps a trifle obviously, I don't believe you need to be Christian to appreciate it or enjoy the story of her journey to acceptance and more, appreciation for her daughter.


*****
Meriah Nichols
With a Little Moxie

A Good and Perfect Gift: Review by Patti Rice

I just finished reading Amy Julia Becker's book A Good and Perfect Gift. It's been on my nightstand for two weeks, and every night before bed I read a chapter or two. In my pre-children days I used to stay up into "the wee small hours of the morning" devouring an entire book in one sitting and then sleep in until ten recovering.

Gone are those days of luxury, and now it takes me at least two weeks to finish a good book...

..and good it was. I received a copy of A Good and Perfect Gift for review, and because I'm a novice at book reviews, I'm just going to shoot from the hip and tell you what I liked and didn't like about it. Because we're informal around here like that.

When I first started reading Amy Julia's first-person account of the birth of her daughter, and her family's journey of emotions in the months that followed, I immediately left a comment on the author's blog...some of the passages were so similar to my own letters to my daughter that it felt a little... eerie. Because the emotions she went through, the deep questionings of her faith and life and Down syndrome and how that all fit together, so closely mirrored my own experience that I felt at times as if I had written her book.

Couple that with the title of her book...which closely resembles the title of my blog, and the theme of my blog...and I started to wonder if maybe we were twins separated at birth.

However...Amy Julia is a graduate of Princeton, and I am...not. I'm a stay-at-home mama of ten, and the closest I've gotten to having anything published was a quote in Real Simple magazine when I sent in three sentences about my "worry quotient" in regards to finances. (March 2008 issue, page 53 if you care to fact check ;))

So after solving that little mystery (we're not twins), I realized that the emotions we go through as new parents of children with special needs are perhaps universal in some respects. Sure, we each filter things through our own life experiences, or faith system or lack of faith system, but many of the similarities I found in Amy Julia's experience were the same ones I've found reading other blogs, and often reflected back in the comment section here on my blog. There is no "right" way to process a diagnosis of Down syndrome, but it is comforting to read someone else's version of what they went through and realize: I'm pretty normal after all.

The parts of the book I loved most were excerpts from Amy Julia's journals. Again, it often felt as if I were reading my own thoughts and journaling on the pages of someone else's book. Here's one of my favorites:

The days feel like a spiral, where I circle around to sadness or delight or confusion or disbelief. And I know it is ground I have already covered, but I have to go back and scope out the territory again, settle into the landscape, assess the contours of the horizon, try to put one foot in front of the other and move forward. Try to think it will not always come back to fear and sorrow, but that we will circle around until their time is done and we can truly accept this new life as ours, as our family, as normal for us..

So reminiscent of my first months after Lily was born.

Here's another:

A friend with a grandchild with Down syndrome remarked upon the blessing it was to us that we didn't know ahead of time. It makes sense now that I think of it. Had I known, I would have prepared for Down syndrome. Instead, I prepared for a child, a family, a gift- not a condition, a syndrome, a problem.

And my favorite of all, (and this was written by Peter, Amy Julia's husband):

Consciously and unconsciously, we had implicit hopes, dreams, and expectations for Penny that having Down syndrome makes unlikely. At the same time, we didn't want to be upset in any way concerning the birth of our daughter. We also realized that it was hardest to deal with this new reality when Penny wasn't in the room with us. When she was out of the room, she became an abstract concept. When she was in the room- nursing, sleeping, and just being held- she became who she is: our beautiful, sweet daughter. The more time we spent with her, the more pure joy we experienced. Who knows what the days and years ahead will hold, but one thing we know for certain: we could not be happier that Penny is our daughter.

I've written here about this before as well. I've had a recurring dream since Lily was born~ that I am just finding out she has Down syndrome all over again. It's like I never knew, and suddenly I'm made aware of that fact, and in my dream I'm crying uncontrollably and scared and grieving...and then I wake up. And those emotions are all right there, and for half a second I am in that half-dream half-awake state, trying to break through to reality- and I turn over and see Lily sleeping peacefully beside me. And instantly the pain and fear is gone and I know: she's just Lily. She's not some scary diagnosis, some unfamiliar syndrome, she's my beautiful, perfect baby girl, and I would not wish away that extra chromosome if I could- because I don't want any baby but my Lily.

Because I'm reviewing this book in the hopes that you'll go buy a copy for yourself, I have to put a little disclaimer here: there is a doctrinal difference Amy Julia and I share in regards to baptism. The core of her faith is exactly the same as mine: salvation through faith in Jesus. But because I am "endorsing" a book, I felt the need to add this in. And I have to say that of all the books I have read about Down syndrome, this one most closely mirrors my belief system, and I love love love Amy Julia's strong stand for the Lord and her strong stand for life.

What I didn't like about the book? I wish it didn't end. Do you ever read books where you just love the characters so much that you want to know what happens to all of them when you're done reading? This is one of those books. But thankfully, Amy Julia has a blog called Thin Places where you can continue to read about her lovely family, and see pictures of the adorable and precocious Penny.

*****
Patti Rice
A Perfect Lily

A Good and Perfect Gift: Review by Tricia Ann Teal Dutterer

On Saturday, I received the book A Good and Perfect Gift in the mail. 

By Sunday evening.  Read.  Needless to say, I liked it. 

I related to so many areas of the book, I can hardly begin to tell you.  First of all, Amy Julia Becker's daughter, Penny, was diagnosed with Down syndrome after birth, just like Kamdyn was.  Reading someone describe their shock, fear, disbelief after that diagnosis hits pretty close to home for me. 

She recalls moments like ones with the doctors, where she realizes, "They don't know what to say." with the "grim faces and somber tones."

I remember so clearly wanting to "run away. Far away. Now"

Reading this book felt like sitting down to coffee with an old friend, and listening to their story.  And since there were so many parts of it that are similar to my own, at times, it felt like mine own, as well.

"Will I be able to be proud of her?  Will I be able to love her?"   "What if our families don't love her."  were my exact fears, just as she recounts.
The way she recounts the events that took place has a flow and rhythm that had me intent to follow along.  Her description of each stage of grief and acceptance was detailed and full of raw emotion.  "Do you still want to name her Penny?" she asks her husband.  Although I never vocalized my thought, I also wondered if we should still give our new baby the name "Kamdyn", that we had grown to love so much.  I wondered if maybe I should give her a different name, because she did feel like a different child than the one I had carried.

Becker writes, "I could predict the emotions, but I couldn't access them.  For now, I had to work it out in my head."  I remember being so devastated, that I just wanted to crawl away.  I didn't want to have visitors.  I didn't want to take pictures.  But I knew that I would get past the raw emotions.  I knew that acceptance and peace were waiting for me, but I could barely sort out how I felt at the time.  So I pushed myself to live.  Breathe.  Be.  As much as I could, because I knew the only way to figure it out was to live it.

Becker articulates so clearly the evolution we experience as we grow, accept who our child is, and find our way through what we feel is loss to experience joy, fulfillment, and peace.

She writes, ".....our highs will be higher and our lows will be lower than most parents.  That the joy will be more joyful, her accomplishment even more exciting.  But the fear and sadness will be deeper too."  So true.  And as we have grown, watched Kamdyn grow, and learned who she is, the joy outweighs the fears.

My book is full of highlighted sentences that struck me and brought memories flooding back.  I'm not a person who loves to read.  I've admitted that before.  But A Good and Perfect Gift is an easy read, and it will make you think about things in a light that leaves you with hope. 

I love how she describes little things that her daughter did that make you realize as a parent that, sure there are some differences, but you still have a baby, like any other, who laughs and plays and brightens your day.

So, go ahead.  Go get it.  Read it.  You know you want to.  You can buy it at Amazon.com  I think it would be a good Christmas gift for family and friends too. 

To follow Amy Julia on her journey, you can check out her blog, Thin Places.  In her latest blog, she recommends the book, The Year My Son and I Were Born, which is ironic, because I just finished that book last night.  And let me tell you, it's another good one.  So there's another review on it's way.

******
Tricia Ann Teal Dutterer
Life is Beautiful

A Good and Perfect Gift: Review by Lisa Morguess

I was contacted by the publicist for the the publishing house that released this book earlier this month, asking if I would read it and feature it on my blog. Always interested in personal accounts of raising a child with Down syndrome, I was happy to oblige.

In this book, Amy Julia Becker tells a somewhat familiar story: full of hopes and dreams, she gives birth to a baby, shortly thereafter learns the baby has Down syndrome, experiences the shock and grief so many of us parents experience with that diagnosis, struggles to come to terms with it all, and eventually finds some semblance of peace. On a very general level, her story is not so different from my own, and so on a very general level I was able to relate.

However, her entire struggle to come to terms with her daughter's diagnosis is framed within her devout Christianity, and to this I could not at all relate. She struggles to reconcile her daughter's "imperfection" with the belief that her daughter is created in God's image. She struggles to find some divine meaning in her daughter's Down syndrome: is it a lesson from God? A punishment? A divine reward?

Additionally, Amy Julia and her husband are both highly educated high-achievers, and the author struggles mightily with the knowledge that her daughter, by virtue of having Down syndrome, has cognitive impairments. Although at some point in the book, she attempts to convey finally coming to terms with that and being able to see her daughter's value apart from her intelligence and abilities, I never got the sense that she actually did find a way to separate her daughter's value from her abilities. Throughout the latter half of the book, she spends a lot of time talking about all of her daughter's accomplishments (and at one point, when her daughter was a mere 14 months old, she and her husband buy a special treadmill for their daughter, determined to get her walking - I absolutely cringed at this). In fact, by her telling, her daughter does seem on the higher end of ability as far as Down syndrome goes, but I have to wonder how she would feel if her daughter were one of the children with Down syndrome who didn't walk until age 3, was non-verbal at age 5, and so forth.

Amy Julia Becker is a talented writer, but her story didn't resonate with me. I understand that she wanted to tell her story from her perspective, but framing it from such a devoutly Christian perspective constructs a barrier between her and non-Christian readers/parents of children with Down syndrome. This is not the worst memoir I've read about having a child with Down syndrome, but not the best either.

*************************
Lisa Morguess
Turn The Page: Review of A Good and Perfect Gift
Life As I Know It

A Good and Perfect Gift, Review by Megan Landmeier

Thankful for a Great Read and New Friends.

Note:  This post is not sponsored.  The book was just that good.

Over the course of the last several months, several friends from various church groups have suggested I order Good and Perfect Gift, by Amy Julia Becker.  "Okay," I thought, "I will eventually."  I noticed that the Down syndrome community was falling in love with the book, too.  When my bloggy friend Meriah hosted a giveaway, offering one lucky reader her own copy of the book (which she was replacing with an electronic version) I decided that if I didn't win, I'd go buy my own.

I won, and a week or so later, my book arrived, as Meriah had promised, tear-stained and well-loved, the way I like my books. Once I picked it up, I couldn't set it back down.

If you have a child with Down syndrome, you'll probably recognize the story.  You know how it goes: You get a diagnosis, you cry, you fight through pain, you watch your child develop a personality, and sometimes Down syndrome makes you sad, and mostly, you are okay, your family is okay.  If you have a child with Down syndrome, you want to read this book for the articulation of the questions of value, intelligence, and the role of God.  Even if you don't share Becker's faith, trust me, the questions she asks are familiar.  (Yes, I know I do share Becker's faith.  But I've heard that the book is great from women who are not part of the Christian church, and I think you will agree.)

If you don't have a child with Down syndrome, please read this book.  Amy Julia Becker pulls from her journal at the time of her daughter Penny's birth.  The outward story isn't surprising if you read this blog, or if you know us.  Penny's diagnosis was a surprise, and Becker writes about the feelings I experienced with Ellie's prenatal diagnosis more eloquently than I ever will.  I want to go back and edit my "Faith and Down Syndrome" post, and simply leave a link to this book. You will understand more of our family, more of the hope, more of the pain, more of the love.  But that's not why you should read this book.  You should read it because Becker addresses pain, surprise, love, redemption, and the general hurts and victories of our shared human condition.  You should read it because "this could never happen to me" happens, whatever "this" may be.

Becker explores her own theology and determines that Penny has value, regardless of her IQ or the age at which she meets milestones.  Becker also questions her own values, admitting with raw honesty her faith in academics, athletics, and hard work.  She articulates her changing perceptions and arrives at a beautiful place of hope, high expectations, love, and acceptance.

When I was pregnant with Ellie, one of our pastors preached on the story from the bible of a man born blind.  The disciples ask Jesus, "Who sinned, this man or his parents, that this man was born blind?"  Jesus responds, "Neither, this man was born blind that the glory of God might be revealed."  I remember tearing up in church that day, praying that this would be the case with our little girl with an extra chromosome and a heart defect.  Becker relates the same story from Scripture in her book, and I was again moved to tears.  As I read, Ellie napped beside me and I reached over to hold her tight.

Becker goes beyond the platitudes of "special kids for special parents" and discusses Penny's diagnosis with a rawness and a depth that speaks to any shocking situation, not just having a child with special needs. 

Go read it.  And check out Amy Julia Becker's blog, too.

***

And now, we all know a post wouldn't be complete without some Ellie photo love.

(After a long day of shopping, the pigtails came out and looked... like this.)

(Love my car.  Love it.)

Today we are also sharing some new friend love.  The other day, Ellie got to meet a new friend who also has Down syndrome, along with her big brother.  Thanks to Baby D and her mom and brother for letting us hang out, and for letting me use the photos!

(Try to resist pinching those cheeks.  Just try.)

(Playing at the park.)

PS. This week is Down Syndrome Awareness Week in Canada.  We love you, Canadians!  Here's an article from Canada this week.

PS#2. Check out I Heart Faces photo inspiration for Halloween.  You might recognize some pudgy little hands.

******
Megan Landmeier
My Stubborn Little Miss

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