“From Grief to Celebration”, by Margaret (Gary) Bender. Reviewed by Lisa Nicholson

I have “met” many parents of children with Down syndrome over the 5 or so years I’ve been part of this great blog community. The majority by far have been parents of newborns or children younger than my own 12 year old. That has a lot to do with the explosion of communication and networking that the internet has created and I have to say that I’ve envied how easily a new mom can just hop on the internet and find out all she needs to know about bringing a baby into the world with Down syndrome. However, finally I found Gary Bender, who’s daughter Alex is 7 years older than mine (and who just graduated from HS) through her blog The Ordinary Life of an Extraordinary Girl.

To read about a child older than my own, out into the future that felt so intimidating, was a
remarkable moment and gift.

Then Gary did something extraordinary herself. She took the content from her posts
and compiled them into a book about her family’s journey and called it From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome .

This story goes deep into the process of acceptance and beyond, “carrying the message of
promise to the next group of parents”. Each chapter takes a step towards the celebration
that many families will discover as they move through the transformation that is having
a child with 21 chromosomes. She uses 10 verbs (and a bonus) to provide a pathway
of success and to describe, not just the inner journey but how her family carved out
their niche in their rural community. Healthy Skepticism is one of my favorite chapters
where “can’t is unacceptable”. She doesn’t skimp on the challenges that greet us as our
children move into adulthood but she shares a perspective of deep possibility that is
encouraging.

Gary is one of the pioneers, a generation who began raising their children in the public
school system under the umbrella of inclusion, with the philosophy of early intervention-
both things that some of the new generation of mothers often take for granted enough to
challenge them to go to a new level. Many people now have written of their journey but
few with such simple, direct grace and wisdom. Gary has not been on the Today Show or
Oprah and she markets her book herself, more evidence of her spirit and determination. I
would highly recommend this book as essential reading.

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Lisa Nicholson

Author Interview: George Estreich + Book Giveaway

This is the first of a two-part series on the blog, With a Little Moxie - a conversation with George Estreich, author of The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit , and Amy Julia Becker, author of Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny .

George Estreich will be giving away one copy of his book, The Shape of the Eye . To enter the giveaway, please leave a comment on With a Little Moxie answering his question for you. That's all you have to do to enter. Winner will be chosen by random.org - make sure your email address is included in your comment so that we can let you know you won.

More on George Estreich:

Website: www.georgeestreich.com

Reviews of his book (on With a Little Moxie) by Lisa Morguess and Alison Piepmeier

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Interview with George Estreich


You have both written memoirs related to your daughters, both of whom were born with Down syndrome. Why did you feel the need to write about your experiences?

In the beginning, writing the book didn’t feel like a choice; it was something I had to do. I was trying to make sense of my experience through writing about it, and to build continuities between the new life and the old—though I wouldn’t have put it that way then. As the book evolved, though, my motivations became less immediately personal. I wanted, in a small way, to join the conversation, to influence the way Down syndrome is seen.

What do you hope readers will gain from your memoir and your perspective?
 I wanted, and want, to change readers’ minds. Many, whatever their intentions, have settled beliefs about what Down syndrome is and what the people who have it are like. Especially when those beliefs were mistaken, I wanted to challenge them, to replace false answers with truer questions.

That’s why I told the story of a single girl: to question the idea that one child with Down syndrome can stand for all children. And it’s why I told my story, spending a fair amount of time on my own misconceptions; I wanted to show the way in which my mind was changed.

One of the best parts of having the book out in the world is that I get to meet readers. The book is the beginning of a conversation, or many conversations, and it’s a true pleasure to continue that conversation with those who are interested.

You have read each other's books; in what ways do you think your books are both similar and different?

For both of us, the arrival of a child with Down syndrome made us question our assumptions. Both of us felt the need to grapple with our questions publicly, in writing. Both of our books are deeply personal, and reveal a great deal about our own reactions to our children, and yet are circumscribed too: if I had to guess (I haven’t asked), I’d say that Amy Julia probably shares some of my wariness of memoirs that tell too much, of self-exposure without revelation.

One obvious difference is that Amy Julia’s writing is framed in Christian terms, and mine is not. At the same time, both of us are clearly fond of irreducible mysteries, and may even prefer questions to answers, so this difference—while significant—is not as huge as it might seem.

What was the most challenging aspect of telling your story?
 Integrating research with storytelling, managing large structures, and telling the truth without doing harm—or without doing too much harm.

If you had to write it all over again, would you change what you said in your book? If so, what would that be?
 Surprisingly, I don’t have anything I really want to change. But this is less smugness than self-protection: revision is endless, and I want to write something new.

How did you come up with the title of your book and how do you think it reflects on the story's overall message?

The Shape of the Eye came to me fairly early, maybe a year or two into the project. I mainly like the way it sounds, and am hoping readers will discover their own connections between it and the story.

What was your favorite part in your story?

I’m partial to the descriptions of life before Laura, particularly the scenes with Ellie in North Carolina; to the short section about driving across the country with Theresa; and to the description of “Your Child’s Heart Book.”

What was your favorite part in Amy Julia/George's story?
 There are many things I like—Amy Julia’s honesty, her thoughtful and complex meditations on the religious significance of her experience, and her presentation of faith. She is devout and self-searching at once; to this outsider, at least, it seems that her faith is renewed by intellect, by questions.

I also very much like Amy Julia’s account of Down syndrome in the world: the way people struggle to make sense of it, to reassure, or to reassure themselves. Particularly powerful: the scene at her mother’s book club, and the scene in which a husband’s colleague urges her to get testing, and questions her testing decision.

What projects are you currently engaged in? Any new books from you on the horizon?

For now, I’ve returned to short forms—short essays, mostly, though I may go back to poems as well. I’m turning over a few ideas for a new book, but don’t have anything specific or firm enough to report.

What question have you always wanted to be asked in an interview? How would you answer that question?

“Now that you’ve won a MacArthur Grant, sold the foreign rights to your book in thirty-seven countries, and attained book sales more typically associated with hastily written novels about vampires, to which part of New Zealand will your family be moving?”

and...
Do you have any questions for the reader?

How has the advent of the e-reader changed your reading habits? For the better, for the worse, or somewhere in between? 

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George, thank you so much. I am deeply honored to host this conversation on this blog.

Readers, by responding George's question, you will be automatically entered in the giveaway for his book, The Shape of the Eye. Please visit With a Little Moxie before midnight on 6/15 to your comment and enter.

Thank you! 

- Meriah Nichols
 

"The Shape of the Eye" by George Estreich. Reviewed by Alison Piepmeier

Here’s my big sales pitch for The Shape of the Eye:  this is a memoir that doesn’t enrage me.

I’m sort of compelled to read new memoirs by parents of kids with disabilities, particularly parents of kids with Down syndrome.  It’s an unhealthy compulsion, because my intense frustration with most of these memoirs is so evident that Biffle has often asked me to stop reading them.  The other day I was mad for some complete other reason, and Biffle said, “Are you reading a memoir?”

I get angry because the memoir writers often spend much of the memoir detailing their misery:  here’s how terrible it is to have a child with Down syndrome.  This story is at this point so old it’s clichéd, and it’s not functional in the ways I think these parents ultimately want it to be.  They end the memoir at a place of love for their child, and they seem to want the reader to feel that love as well, but what the reader more likely feels is some version of, “I'm glad that’s not my kid.  But bless their hearts.”

The Shape of the Eye doesn’t do this. 

George Estreich certainly acknowledges profoundly mixed feelings when his daughter Laura was born and diagnosed with Down syndrome.  For instance, he writes, “I felt that Laura’s life was valuable, that she was a child, a sister and daughter and granddaughter above all, that she might learn and thrive.  I also felt that our lives were over, that her birth was a tragedy, and that we were condemned to a half-life of hospitals, acronyms, therapists, and forms” (xiii).  So here’s what he does:  he acknowledges this emotional place of paradox, and then he launches into a thoughtful reflection (even analysis, although I get that this word doesn’t turn other people on the way it does me) about how he and his family create meaning and love in the midst of a culture that, by and large, doesn’t do particularly well with disabilities, particularly with cognitive ones.

And he discovers that life with Laura is like life with a child:  delightful, challenging, hilarious, frustrating.  This is not a book about Laura’s birth being a tragedy.  It is, as is true for all memoirs, a book about George Estreich, about his growth, his family heritage, his struggles with depression and his expansion into the role of father/writer/activist.

And what I particularly appreciated is that it’s a book about how we understand Down syndrome, how we talk about it.  Estreich (like me!) is critical of many of the familiar stories that are out there, and he notes, “Each time I shared the news, I faced the difficulties of narrative” (26) (interestingly, I was making this very point Wednesday in a lunch with another scholar who studies disability).  He actually has lots of good points about the importance of narrative—about the problematic descriptions of kids with Down syndrome as “sweet”:  he even calls out the “little angels” description that pisses me off so much.

He writes about his own process of beginning to write about Laura.  He does some reading—medical and historical—about Down syndrome and discovers that the way it’s described is often nauseatingly bad:  unforgivably inaccurate (one fairly recent medical book describes people with Down syndrome as “trainable”) and offensive.  He discovers that “What Down syndrome ‘was’ mattered less than the way it was described” (151).   

By the time I got to this part of the book, I knew I’d found an ally, somebody who should come hang out with us at the NDSC Convention (come on, George!), and someone I should talk to about my research into prenatal testing. 

I’ve gone through this review resisting the urge to offer tons of quotes from the book, but let me end with this one:

If our technologies are to benefit people with Down syndrome, then their lives need to become more real to us.  Science can illuminate one part of that reality, and technology can affect it.  But only story can convey it (208).

I completely agree.

Alison Piepmeier

blog: Baxter Sez

"From Grief to Celebration, How One Family Learned to Embrace the Gift of Down syndrome." Reviewed by Michele Cozzens

I can't think of anyone who wouldn't benefit from reading this book, From Grief to Celebration: How One Family Learned to Embrace the Gift of Down Syndrome. It is extraordinarily well written from the heart of a mother with three children, including one who happens to have an extra chromosome.

The child--who is actually now a young woman--is named Alex. And through the pages of this book you'll fall in love with her. But I think even more, you'll fall in love with the author, Margaret "Gary" Bender. In these pages, Gary bares her soul. She shares every painful, joyful and revolutionary moment of her experience as a parent, and she does so not only out of love for Alex--and her family--but also out of what appears to be a need to advocate for all parents who have children with special needs.

This book must be added to the bibliography Gary provides in the chapter titled "Research," which includes a list of books she sought and read when Alex was born in 1993. If you indeed have a baby with Down syndrome, please put Gary's book at the top of your list. You will learn many things, but you will especially know that you are not alone; you will learn how to advocate; and you will learn to embrace and celebrate your child/situation. And as any parent will tell you, just like kids without special needs, our babies grow up very quickly. You will learn your Down syndrome child might not do everything like walk and talk and potty train according to what you thought was normal, but she/he will learn. And she/he will also teach YOU things you never imagined.

What makes this book additionally noteworthy for parents with and without children of special needs, is that Gary allows us to see how universal the experience of parenting truly is. In other words, I found Gary to be not only an advocate for parents of children with Down syndrome; but also, she helps us recognize and remember the individual needs of all children. In a particularly moving segment of the book, she shares the feelings of Alex's sister and brother. Her sister's college essay is well written and very moving.

The book--a quick read--is organized according to a list of verbs that Gary believes has defined their experience. As the title suggests, the verbs begin with "Grief" and culminate in "Celebration." The verbs she uses, numbered from 1-10 plus the bonus, are relatable to parenting and, frankly, life in general. I give this book my highest recommendation.

Michele Cozzens
Author: Irish Twins
www.michelecozzins.com

"The Shape of the Eye", by George Estreich. Reviewed by Lisa Morguess

I have read numerous memoirs about having a child with Down syndrome. The Shape of the Eye is, hands down, the best one I've read. Where Jennifer Graf-Groneberg's Road Map to Holland was a lifeline to me in the days and weeks immediately following my son Finnian's birth, diagnosis of Down syndrome, and major surgery as a newborn, soothing me and assuring me that the grief I was feeling was normal and that it would pass in time, The Shape of the Eye examines that grief, without judgment.

Like so many parents of children with Down syndrome, George Estreich and his wife were shocked by their second daughter's diagnosis soon after her birth, and like so many of us, they found themselves suddenly thrust into the alien territory of raising a child who is different, who is largely, in an abstract way, seen as defective by society. His book, which he spent nearly a decade doing research for and writing, is a personal, heartfelt, often witty account of raising a child with Down syndrome. More than that, however, it is also a historical account of what has shaped our attitudes about Down syndrome - the truths, half-truths, non-truths, contradictions, and paradoxes. This is a book not only about Down syndrome, but about family, and ethnicity, preconceived notions, and what it means to belong.

Mr. Estreich, a stay-at-home dad and a poet by profession, is an extremely gifted writer. I could not stop turning the pages and throughout the book often felt as if I could easily sit down with him over coffee and shoot the shit about Down syndrome, about parenting, about family, about life.

Five stars. I cannot recommend this book highly enough.

*****

Lisa Morguess

blogs: Life As I Know It

          Turn the Page

"Bloom" by Kelle Hampton. Reviewed by Tricia Ann Dutterer

I didn't intend to write this.  I figured I would just let it go, but I decided, why not.  So I'm going to just go for it. 

First of all, I want to recognize the things about Bloom that I liked.  I liked her honesty.  She was transparent and raw in sharing her emotions.  In her blog, she has not been very open on her thoughts about Down syndrome and her struggles, and I think she opened up more in the book.  She's still unicorns and rainbows, because she always goes back to the same fundamentals:  Nothing else matters, because I love my child.

I LOVE how she has the pictures in the book too.  If I ever write a book, I think I might steal that little idea. 

In college, while learning to be an elementary school teacher, I learned that during a parent-teacher conference, you should tell the parent what you like/ the positive, then give the negative.  I did my positives, so here's my "negatives".

Kelle made reference to the fact that "she was going to do this different".  I get that she's all unicorns and rainbows, and even though she is a pretty extreme version of that, I don't feel like she is doing things so different than most of us do.  I think the vast majority of us are celebrating our children and focusing on the positive.  We are not walking around depressed, with a black veil over our faces.  We are living every day and loving our child.  Some of us share our struggles with things like gross motor or speech or sensory issues, or whatever more freely, but it doesn't mean we're dark and twisty.  We're just being honest and trying to help someone else who may be feeling the same way.

I felt like I was judged for being a Christian.  Because certainly I must hate anyone who lives a lifestyle that is different than mine.  I don't, by the way.  I also must think that anyone who is gay is going to Hell.  I don't think that, either, by the way.  The Bible makes it clear the Way to Heaven, and that's Jesus Christ.  You know that whole "I am the Way, the Truth, and the Life."  It's true. 

I felt like I was mocked for being a Christian.  You know, the whole "God spinners" thing.  Sure, there are people that use God as a cliche and could care less about God until their version of God fits into their life.  But I believe that God has a plan, and I'm not "spinning" God when I say that.  The Bible says, "But the very hairs of your head are all numbered" in Matthew 10:30.  And in Matthew 6:26, it says,  "Behold the fowls of the air: for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?"  It's like saying, Hello!  If God cares about a stupid bird, don't you think he cares so much more about you?  Does that mean that God's hand is absent from things when tragedy happens?  No, of course not.  God does not want anyone to suffer, but some things just are, because they are a part of life.  Death and sickness are a part of life.  I would never go up to someone who just lost a loved one and say, "Oh, it must have been God's plan", because that is not helpful.  But I would encourage them to turn to God for peace, because it's there.  And I know it's there when I look at ladies like this one or this one.

Ok, and now for the part that I know is going to make me really uncool, which I am pretty uncool, by the way.  But I'm cool with that, because it's been that way my whole life.  In middle school, I got made fun of for wearing tennis shoes from PayLess and clothes from KMart.  I still wear shoes from PayLess, by the way.  And if there was a KMart in our town, I'd go right now and buy a shirt.  In high school, I was known as the girl who never talked.  And then in college, I started to figure that it's ok to be who I am.  So here goes.  I find it completely annoying when people cuss.  And not just annoying, but I feel like it makes them sound less intelligent.  It doesn't mean they are not intelligent, it just sounds that way.  We have a beautiful language, full of descriptive and colorful words and someone has to use a 4 letter cuss word to describe how scared or surprised or mad they were.  C'mon, there's so many better ways.  By the end of Bloom, it felt like I was reading cuss words on every page.  I would never let my kids read it, and I wouldn't recommend that they read it either. 

And for uncool thing number 2:  I find the sentiment of "throwing back a cold one", whenever life's troubles arise, unappealing.  I grew up with an alchoholic.  We would come home after an evening out at soccer practice or where ever, and he would be so passed out, drunk that we had to climb in the window, because we were locked out, and he couldn't hear us knocking.  When I was probably around 6 or 7 years old, I remember sneaking into the beer stash and dumping it all out into the yard, because I didn't want him to drink anymore.  And I'm sure when he went to get more, he just figured he had forgotten, and it was all gone.  And by the end of Bloom, I felt like the running theme was, "Hey if you're having a rough day, just drink.  It makes everything better."  I don't know if she was trying to come off as cool, because she wants her kids to think she was the cool mom when they read the book one day.

So that's what I thought about the book.  Boo me if you want.

As far as Kelle, I respect everything she has done in the Down syndrome community.  All of the interviews she has done only bring more awareness to Down syndrome and how beautiful it is, and I love that.  I love her writing (when she's not cussing), and I love her pictures.  I'm just not a big fan of the book.

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Blog: Life is Beautiful 

"Bloom" by Kelle Hampton, Reviewed by Emily Cornell

Last week I promised a book review of Kelle Hampton's Bloom. It seems as soon as I make promises, life gets crazy. Sickness, spring break, and the craziness of raising three kids has gotten in the way this past week. Most nights I fall onto the couch to relax after my crazy days, exhausted, and aimlessly flip through the channels or web surf because it doesn't require any extra effort. In actuality I should be diving into the textbook sitting on my end table ("Effective Methods of Inclusion"...for my teaching license renewal, though there will be some personal gain from this class I am sure!), but I haven't mustered up enough energy to start that one yet. Soon. Instead, I will blog.

So, what did I think?

I didn't preorder the book, and I wasn't sure if I would want to read it as soon as it came out. I actually had a lot of mixed feelings about it. I found Kelle Hampton's blog shortly after Charlotte's birth. At the time, it was exactly what I needed. While digging through website after website of scary statistics and all the health issues my newborn may face, Kelle's blog was a breath of fresh air. Beautiful pictures, a carefree approach to the world, and words that painted a picture of a joyous life. Her blog showed me that I would feel okay again one day, and joy would return to my life.

I did end up buying Bloom for my Kindle the day it came out. My apprehension about reading the book came from knowing that reading someone's account of their birth experience of a child with Down syndrome would hit pretty close to home for me. Kelle and I have a few things in common; we were (are) both teachers, both in our early 30's when we had our child w/DS and both have older children. I relate a lot to what she writes and I was worried that reading her book would force me to revisit feelings I have since put behind me.

I read the book in two nights. It was a quick, easy read and it delivered everything the book trailer promised. It was hard for me at times; more than once I found myself dabbing away tears. I appreciated Kelle's honesty as she recounted Nella's birth and early days. I was most touched by her description of the first time her older daughter met Nella, and how at first it was hard for her to witness because all she could think of was the "sister relationship" she had built in her head for her girls and how it wasn't going to be at all like she imagined. This was something Mike and I struggled with in the beginning; Mike having three sisters, me having three brothers, neither of us had experienced the bond of a same-gender sibling and were excited to witness this relationship between our girls. We mourned this in the early days, only to realize later that we didn't need to.

I have read a few posts about reactions to Bloom on the Down syndrome message board I frequent. Some are turned off by Kelle's approach to her blog and, really, to life. Some thinks she makes life look too perfect, and doesn't give an honest account of what raising a child with a disability is like. Kelle's blog existed before the birth of her daughter Nella, and I personally enjoy how she has kept it pretty much the same, while including advocacy and awareness when she sees fit. I believe Kelle is doing a lot of good for the Down syndrome community, and Bloom (which was #11 of the best seller list last week!), is bringing awareness to Down syndrome that wasn't there before.

I tend to be an optimist when I blog. I enjoy reading blogs and books written by other optimists. When I write about  raising Charlotte and what a joy it has been, I mean it. This doesn't mean I am not constantly waiting for the other shoe to drop. It is hard not to think about those scary statistics and wonder what health concern we will have to deal with next. It doesn't mean that I don't already have anxiety about sitting through my first IEP meeting...and it is still a year away! It doesn't mean that I am not freaked about the future, the unknown of what adolescence and adulthood will be like for my daughter. It also doesn't mean that I don't constantly think about the first time any of my children have to face ignorant bully.

However, I tend to focus on the joy, because frankly, why wouldn't I?! Everyone has fears and worries about future problems that one can't control. I, like Kelle, try not to focus too much on the negative, because I would rather concentrate on the pretty awesome things happening right before my eyes.

I recommend Bloom to anyone looking for a good, heartfelt story. Check it out.

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Blog: Charlotte's Web(site)