Wednesday, July 18, 2012

Author Interview: Amy Julia Becker

This is the second of a two-part series - 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. Both interviews were conducted via email with Meriah Nichols, blogging at With a Little Moxie.

More on Amy Julia Becker
Amy Julia's Awesome Blog: Thin Places
Amy Julia on Facebook
Amy Julia on Twitter

My Review: A Good and Perfect Gift
The Questions:

1. 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?

The genesis of A Good and Perfect Gift was a journal. After Penny was
diagnosed with Down syndrome two hours after birth, the easiest way for me to
try to figure out what I was thinking and feeling was to write about it. I sometimes
felt like a little kid again because my mother was helping out a lot and she would
send me to my room and say, “Take a nap, or write.” She knew what I needed.
About once a month I would post an edited version of a few journal entries on
a private blog intended only for our friends and family. In time, I realized that
parents who didn’t have children with special needs nevertheless resonated with
many of the hopes and fears and doubts and joys I was experiencing. By the
time Penny was two, I felt compelled to write about the whole experience in a
more public way, in hopes that it would prompt questions and reflections about
the goodness of life and the challenges and rewards of parenting.

2. What do you hope readers will gain from your memoir and your

I think of A Good and Perfect Gift as a meditation on the nature of love,
particularly parental love, I suppose, but really love in general. So much of our
culture is built upon the assumption that our identity comes from our abilities, and
this assumption is destructive to all of us because it implies that we are only so
valuable as what we can achieve. But if our identity is based upon the fact that
we are loved and that we love in return, it enables us to see one another as gifts
and to give and receive with humility and gratitude. I hope readers come away
from this book with greater freedom to love and to be loved.

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

The Shape of the Eye is broader in scope than A Good and Perfect Gift. For one,
Laura, George’s daughter, is older than Penny, so his story spans more time
and perhaps demonstrates greater wisdom because they have had more time
together. George also weaves in his own relationship with his parents more than
I do. Laura’s medical challenges in the beginning of her life were very different
than Penny’s, and the reality of Laura’s physical difficulties early on led George
to different places as a result. But both books attempt to simply tell a story of
a family. I hope both of them do so with beauty and integrity. I know George’s

4. What was the most challenging aspect of telling your story?

Writing about the beginning of Penny’s life was particularly difficult. I was working
on the book years after those early days, and I had resolved so many of the
emotions. The fear and grief and anger was gone. It was tempting to make
editorial comments, to assure the reader that I wouldn’t feel like this forever, or
even to wonder out loud how I could have been so upset. But of course I needed
and wanted to tell a true story, and the true story of my life as Penny’s mother
includes the weeks and months of confusing emotions after her birth.

5. If you had to write it all over again, would you change what you said in your
book? If so, what would that be?

There’s one passage that I often read when I’m talking about the book in public.
It happens when Penny was five months old and some high school students
come to our house and say, “You have the perfect life.” From there, I go on
to think about the meaning of perfection, the ways in which our life doesn’t
conform to cultural standards of perfection, and what it might mean to think about
perfection differently. In retrospect, I wish I had written that passage with a little
more clarity. One of my struggles since I was a little girl has been perfectionism,
which I now see as the attempt to pretend to be perfect. Every perfectionist
knows that perfection (by any measure) isn’t possible, but the pretense of it is. A
child with Down syndrome can’t pretend to be perfect. Penny’s presence in my
life knocked the perfectionism out of me, which was incredibly jarring at first, but
also incredibly freeing over time. If I were writing it over, I’d edit that one section
to be a little more clear about this perfection stuff.

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

I’m terrible with titles. I had originally named the book “Just Penny.” I liked the
sentiment—there’s a scene in the book where I realize “she’s not our daughter
with Down syndrome. She’s just Penny”—but I didn’t love the way the words
sounded out loud. They also have an unintended double meaning that she’s
both “Simply Penny” and “Righteous Penny.” So my agent and I spent a few
days brainstorming, and she ultimately came up with the title A Good and Perfect
Gift. I love her choice because it mentions themes that run throughout the book
as I consider what makes life good, as I discover a new meaning of perfection,
and as I come to understand what it means to receive Penny as a gift. It’s also a
reference to a verse from the Bible: “Every good and perfect gift is from above,
coming down from the Father of the heavenly lights, who does not change like
shifting shadows” (James 1:17). In this way, the title also reflects my growing
understanding throughout the book that God has a purpose in Penny’s life, and in

7. What was your favorite part in your story?

It’s hard to pick a favorite part, but I laugh out loud every time I read the part
where I’m telling my husband Peter that Penny’s hearing might be compromised
and she might have trouble hearing the “sh” sound. He responds, “Good thing we
didn’t name her Sheila.”

8. What was your favorite part in Amy Julia/George's story?

Again, hard to pick a favorite part of George’s beautiful book, but I find myself
returning again and again to one paragraph:

A syndrome means, at root, a 'running together.' When you have a child, it all
runs together: the heart defect, the eyes, the way her voice sounds, the name
of the speech therapist, the worries over the future, the joys of discovery, the
sliding sense--slow, quiet, enormous, an avalanche in the skull--that different is
not as different as you thought. The genes produce the child, who lives a story,
whose story is bound up with yours. So reducing a child to a heap of medical
fragments is, for a parent, a complicated and dissonant act. It is a necessary
fiction, a story one tells only in order to move on.

George states it perfectly, and his words have informed my own thinking about
how a diagnosis is only the beginning, and perhaps even a false, if important
beginning, to understanding a child as a full human being with an interwoven

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

My biggest project at the moment is moving our family of five to Connecticut!
With that said, I am working on a short ebook about prenatal testing that will
come out in September. I have two books knocking around in the back of my
head, but it will be a few months before I have time to sit down and listen to what
those ideas have to say.

10. Do you have any questions for the reader?

What is one gift that your child has brought into your life?
Thank you, Amy Julia. I am honored to have you here.

Friday, July 13, 2012

From Grief to Celebration by Gary Bender, Reviewed by Megan Landmeier

From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome by Gary Bender, Reviewed by Megan Landmeier
This post first appeared at My Stubborn Little Miss.

When Gary (Margaret) Bender emailed me and asked me if I'd like to give away a copy of her book on my blog, I was excited.  I'd read a few reviews on this site, and although I contribute here, I hadn't picked up Gary's book yet.

What first struck me about From Grief to Celebration was the fact that Gary is the parent of an older child with Down syndrome; her daughter Alex was 17 at the time the book was written.  While I loved Bloom and A Good and Perfect Gift, both books were written by parents of younger children.  Gary offers the distance and perspective years can bring.  The book is a fast read, and I read it on a flight as Ellie napped in the Bjorn.

From Grief to Celebration is based around ten verbs that Gary and her family contributed in processing Alex's Down syndrome diagnosis.  I appreciated Gary's story of receiving the news that Alex was not going to be the baby she expected, although that story is now a familiar one.  Gary's writing style is tight, and she gets to the point without becoming dry.  Her descriptions of advocating for Alex encouraged me, because I'm grateful for moms who have gone ahead of me to promote inclusion.

My favorite passage of the book was something that surprised me.  While I desire for Ellie to be included with her typical peers, I want her to find her place in the special needs community as well.  I want her to thrive.  In the chapter on "Include," Gary writes:

"What I didn't believe at the time, but know now, is that Alex shines when she's with other people with disabilities.  She can interact equally, both socially and competitively.  She feels genuine friendship, pride, and success."

Another mom of a child with special needs that I know has mentioned her daughter having "many circles," and I think Alex's social life as described by Gary reflects a bit of this.  School, general education, special education, Special Olympics, our local Down syndrome group - I want Ellie to find her place in each.

I would recommend From Grief to Celebration to any parent of a child with Down syndrome looking for a memoir that takes them farther down the road, beyond early childhood and into adolescence.

Megan Landmeier
Blog: My Stubborn Little Miss

Wednesday, July 11, 2012

"Bloom" by Kelle Hampton. Reviewed by Meriah Nichols

"Bloom" by Kelle Hampton. Reviewed by Meriah Nichols

I had arrived in a comfortable place with my feelings regarding Kelle Hampton. I admired the money she raised for NDSS (assuming, of course, that the money isn't going to padded salaries but rather to assisting individuals with Down syndrome). Happy that she had toned down the seemingly endless tea-parties on her popular blog, Enjoying the Small Things, and had turned some attention to Down syndrome. Because, as you see, she had been lifted high by the Ds community and had accepted leadership but wasn't stepping up much - besides to stand behind podiums and accept awards.

It was a nice spot, that comfortable spot. It was warm and friendly and I rather liked tapping in to her blog from time to time to see what was new.

Imagine then my astonishment at cracking open her memoir, Bloom: Finding Beauty in the Unexpected and discovering almost immediately that it must have been written by an entire other.

Using broad strokes full of sweeping generalizations, worn platitudes, exhausted cliches and sophomoric adjectives, Kelle paints a picture of her life. Unlike Monet however, the painting does not become a masterpiece when viewed from a distance. Rather, it's becomes a mash-up of gloss, painted thick but smelling of tempera - which, when stormed upon, will run.

She starts her book off with her "perfect" life - a life full of friends, good times, fun, and things. Then she has Nella, her daughter with Down syndrome and she undergoes great pain and grief before transforming herself from someone who likes to have a good time and party while wearing great clothes, drunk - to someone who likes to have a good time and drink while wearing great clothes.

Speaking of drinking: Kelle and her husband Brett don't seem to ever talk about problems; rather, they drink through their problems. They have this "unspoken pact" to not "bring the other down" by talking about the things that have real meaning in their lives. Rather, Brett uses his "uncanny ability" in passing out the beers. In her (5 day) hospital stay with her heartbreak over having Nella, Kelle is with her friends while Brett brings the beer. The night she wrote her famous birth story - she wrote through her agony; Brett brought her beer. It seems that at every turn, they are "cracking a cold one." The former alcoholic in me got thirsty with all that drinking; the wife in me that relied intensely on her husband to pass through her own grief (and yes, despair) at bringing a child with Down syndrome into the world was absolutely at a loss as to how one could go through this without talking about it with one's partner.

Kelle's writing about the "hot" therapist and the "hot" doctor in the hospital does nothing for me in developing even a smidgen of a sense of admiration in the loyalty, strength and bond of her relationship with her husband, either. Rather, I was struck at the seeming senselessness of their union - why be together? Just to drink? Get wasted and skinny dip with the neighbors, as she writes of?

The content being what it was for me, I turned to look and absorb her actual writing - the business of crafting sentences, pulling them together with meaning. I think Kelle does a good job of writing in her blog, after all.

I felt lost in a maze of repetition, contradictions (in the very same paragraph!). She likes to cuss, yes, but unlike say, Bill Bryson, she doesn't insert a well-timed swear word into an elegant sentence, throwing the visual picture into quick comic relief. Nor is she like other authors who just have a potty mouth throughout and it's a part of who they are, with a writing style being wrapped tight around each and every cuss word. No, Kelle does not cuss like that - she cusses like she's out to prove how "bad ass" she is, that she's a "rock star" - and she really, really likes to call herself a bad ass rock star. She throws in her "hell" and her "damn" or whatever like it's going to hammer that final nail, firmly hanging her neon sign, but coupled with the melodrama with which she drenches her life, if feels a lot more like reading someone's embarrassing diary from high school than a book that is supposed to pack an inspirational punch.

"Bloom" being as far from an inspiration as a book could possibly be for me was actually depressing. Literally. It triggered an attack of depression. If this book is making bestseller lists (as it is), if this book is receiving great reviews (as it is), then its success obviously stems from the deep and essential pity that the general population feels for a young mother who receives a surprise diagnosis upon the birth of her child with Down syndrome. The success of this book hammers the point of how much further the walk of inclusion and advocacy remains, because I am confident there is absolutely no way this book could be successful on the basis of superior writing.

Furthermore, I honestly do not understand the portrayal she paints of herself as one who finds the good in all things, who fleshes out even the tiniest bit of the positive and "sucks the marrow out of life". Her life is one blessing after another. She has money. A full backing of friends. She has health, beauty. She even has a gay dad, for crying out loud! What more could one ever ask for? I would believe her ability to be a solidly bright and positive spirit if I saw something in her life - besides having a child with Down syndrome - which was truly a challenge. Getting burned like NieNie maybe. Or growing up poor - or ugly. Or teased. Or abused. Or just...something more than the awfulness of owning a house with 15-year old tiles and not wood floors...Or having a child with Down syndrome... sigh.

On the bright side - the photos - of which there are an abundance - are first-class. Kelle is in over half of them, so obviously some uncredited soul is highly involved. The ones she did take however, are lovely. The photos are extremely important in changing perceptions of Down syndrome, and I acknowledge her for making Down syndrome far more appealing to the mainstream US than it probably ever has - the gloss and "perfection" with which she continues to paint her life includes Nella. Nella - and therefore by extension, Down syndrome - is thus portrayed by Kelle while garbed in fashionable attire, at good angles, in lovely light and with fetching accessories.

I wish I liked this book. I didn't. I think that while she is a very good blogger, she is not a very good writer - living proof that there is a an enormous difference between handling a blog and writing a book. Furthermore, I am upset that she is a representative of the Down syndrome community, indeed she is the representative. I'd rather have George Estreich, Amy Julia Becker, Martha Beck or Kathryn Lynard Soper; people who truly know how to craft a memoir. People who have a maturity and depth of understanding regarding Down syndrome and disability that does not include laughing at their friend's drawing of stick figures of men with large penises under a table at an emotional meeting in which they are present as an honorary speaker.

Or, if they do, have the good sense to not write about it in their books.

Meriah Nichols
Blog: With a Little Moxie
Website: meriahnichols