"From Grief to Celebration", by Margaret "Gary" Bender, Reviewed and Interviewed by Meriah Nichols

Part 1: Review of "From Grief to Celebration"
I don't know what was in your Down syndrome packet after you connected with your local organization - and I don't know what your initial reading list was. But I'll tell you this: in my packet was "The Light at the End of the Tunnel" - hello there, death! - and on my bookshelf were real winners that depressed the dickens out of me - like  Babies with Down Syndrome: A New Parents' Guide.
 
I read tomes about parents dealing - their stories of learning to accept and love their children, but in all honesty, I think when you are faced with the knowledge that your unborn child will be coming with an extra chromosome, it's enough to just grapple with all the prejudice and stereotypes out there regarding Down syndrome. It's hard to really, truly handle and relate to many of the memoirs - those have a better time and place later, in my opinion.
 
Margaret "Gary" Bender  (- yes, she is a woman and her nickname is "Gary"!) wrote a gem of a slim book about how her family learned to embrace Down syndrome. She divided the book into 10 chapters - with a bonus one! - and folded each of the chapters into a verb that related to her path of 'grief to acceptance'. They are short. They are easy to read. They are, in my opinion, bite-sized, perfect for a new parent, or one who is just entering the world of parenting a child with Down syndrome.
 
The chapters and topics covered are flexible in that they are not too specific nor too broad. As they speak from the mother of a teenager with Down syndrome - rather than a young child - there is a ring of assurance, confidence and positivity that can only be gained from years of actual experience. While there is an awful lot of material from parents of young children with Down syndrome, there is remarkably little from parents of older teens.
 
I personally enjoyed the anecdotal natural of the book. Gary is a blogger, and her book reads a bit like a blog. It's direct, unpretentious. I wish I had read it when I was first starting out - and I sincerely hope word spread on this great little nugget, giving new parents a glimpse into a happy future, with pointers to be aware of along the way.
*******************************************************
 

Part 2: Interview with Margaret "Gary" Bender
1. You have written a book about your daughter Alex who was born with Down syndrome - and your experience as a parent of a child with Down syndrome. Why did you feel the need to write this story?
 
When Alex was born 19 years ago, we met many families with children with Down syndrome, who guided us and shared their promises of the future. A lot has happened in those 19 years in terms of education, inclusion and acceptance and I hope to share the lessons of our journey and the message of the promise of a bright future for families with young children with special needs.
 

2. What do you hope readers will gain from your book and your perspective?
 
My hope is that readers will learn from our journey, and embrace Down syndrome as an unexpected opportunity to grow and learn.
 
3. What was the most challenging aspect of telling your story?
 

I tend to be a Pollyanna at times, and I do not want to give the impression in the book that life is always rosy. Certainly we have bad days or weeks, but these times pass and we move on. Life for us is not always a bed of roses, there are also thorns.
 
4. If you had to write it all over again, would you change what you said in your book? If so, what would that be?
 
I would focus more on our educational and community based experiences, and provide detail about how the right supports, services and confidence facilitate success for all children. My husband likes to say "it takes a village" to raise a child, and this is true of children of all abilities. 
5. 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 title is derived from the ten chapters, (plus one bonus chapter!) or verbs I use to describe our journey. 
 

6. What was your favorite part in your book?
 
That's a tough one as it was great to relive the last 19 years. I guess I would say the chapter entitled "Incorporate" where I share Alex's siblings reflections on having a sister with Down syndrome. They have grown up to be caring and compassionate people, who are (unknowingly) active advocates for all people with disabilities.
 
7. If there was one overall message that you'd like your reader to come away from From Grief to Celebration with, what would it be?
 
I quote from the final chapter of the book "Celebrate".
"Everyday we celebrate the pure joy of Alex, our beautiful daughter, sister, granddaughter, niece, cousin, student and friend who continues to enrich  our lives in unimaginable and immeasurable ways. Her very existence has given us the power to become better people and more emphatic community members".
 
8. What projects are you currently engaged in? Any new books from you on the horizon?
I really enjoy posting as often as possible on our blog, "The Ordinary Life of an Extraordinary Girl". Currently I am republishing the "Educating Alex" series, which shares our experiences with school from birth through high school. Perhaps that would make for a good book! 
I'd also like to document Alex's journey from high school, through college, employment, relationships and adult life. 
 

9. What question have you always wanted to be asked in an interview? How would you answer that question?
 
This is a question I am often asked and enjoy answering - "Where will Alex live when she is an adult?" And my answer - "Where ever she wants". I do have some caveats however including safety, access to employment, social opportunities and transportation.  

10. Do you have any questions for the reader?
What are your child's dream for their futures and how will you honor them?

 

Thank you, Gary!

 

 

**********************

Part 3: Book Giveaway

 

I'm giving away my copy - while I loved the book, I can't keep anything anymore because of the Pan Am Overland. So just leave a comment to enter. Open to anywhere, winner decided by random.org a week from today, August 29th: http://www.withalittlemoxie.com/2012/08/from-grief-to-celebration-book-review-author-interview-giveaway.html

 

THANK YOU!

**************************************
Connect with Gary:
Blog: The Ordinary Life of an Extraordinary Girl
Facebook: (personal) https://www.facebook.com/gary.h.bender
                    (book) http://www.facebook.com/pages/The-Ordinary-Life-of-an-Extraordinary-Girl/165047126851472

Twitter: @garyhbender

 

..or email her!

 

Buy the Book

 

It's the best price on her blog - a flat sum of $12.50. Click here - it's a link to paypal on the right hand side.

 

It's also on Amazon - only 3 copies left - for $13.99.

 

 
*************************************

Meriah Nichols
Blog: With a Little Moxie
Site: meriahnichols.com
 

 

 

"From Grief to Celebration", by Margaret (Gary) Bender, Reviewed by Amber Malmberg

After blog-following some other moms with children who also have Down syndrome I came across the blog of a mom who's in an entirely different stage of life than me.  She was blogging about hunting for colleges, and her daughters independence.  She was blogging about her daughters accomplishment, and about everything I dream about for my little Royce.  Her blog was more refreshing for me than any others.  It was of hope, accomplishment, success, guidance, and joy.  

She has also published this book, From Grief to Celebration .  It's an easy 74 page read that allows the reader to experience through her eyes.  I found it honest and uncensored, helpful, personally un-relatable at times, yet completely relatable at others.

The book is broken into 11 "verbs".  First, Grief.  Second, Research.  And then: Incorporate, Promote, Include, Understand, Advocate, Expect the Best, Healthy Skepticism, Plan, and then Celebrate.  

Honestly, the mere word "grief" put a bad taste in my mouth.  I hated hearing it.  But you know what?  I've come to a place where I can finally appreciate other peoples reactions, and their honesty therein.  

I can relate to Bender as she states "Why did the mood in the delivery room resemble a funeral parlor instead of the party-like atmosphere that was present after the birth of my firstborn"(Bender,3).  Only she knows!  Only her and other moms who also have children with Down syndrome know that feeling.  
       
If I could change anything about this world, I would start with the way the hospitals are trained to react. Where were my smiles?  Where were the congratulations?  Where was Royce's party?  You can be dang-sure we celebrated HARD CORE by the way!  So Celebration would be my first!  I am also very moved and grateful for how she describes her reaction, her husbands reaction, followed by saying "Although we were together physically, I know for the few weeks following Alex's birth, we were apart emotionally.(Bender, 10).  Everyone reacts differently.  And each is right for that person.  That was a lesson I had to learn, and I deeply appreciated her sharing this truth in her book.   

Bender and I reacted differently in the second "verb"as well.  She shares how "As soon as possible after we learned Alex had Down syndrome, we began our research"(Bender, 17).  After Royce was born we were given reading material by a social-worker, given books, invited to blog-follow, etc.  I remember not looking at most anything for a long time.  He was a baby.  He was a BABY!  And I knew I had a lot of time to do all of that.  And naturally, I slowly read-up as I desired, and about what I desired.  I was very selective. 

I loved everything she shared under the "verb" of Advocate.  She talks about advocating for your child, but most importantly, giving your child the skills to advocate for themselves.  LOVE, LOVE, LOVE that!  "When Alex feels self-assured, she succeeds in advocating for herself"(Bender, 52)."I'll store that one in my memory bank!  

The "verb" Expect the Best was also full of great and relevant insight for me.  "I expect the best, but have learned to adjust as needed.  This is especially true when we're in a valley, or experiencing a temporary lack of growth"(Bender, 57).  This hits home for me.  I too expect the best.  I passionately don't think my Royce is "retarded".  I think he's "developmentally delayed", and there's a very distinct difference to me.  That doesn't mean I live in denial, it means I "expect the best, but have learned to adjust as needed"!  I also love her attitude.  She shares how "plateaus are simply resting places for her to take time to catch up"(Bender, 57).  I'll have to pin that one!

The "verb" Practice Healthy Skepticism was another great section that delves into her daughters accomplishments, and the lie of one's IQ.  Loved every word.
And most refreshing of all was her and her husbands shared desire to reach that "empty-nesters" stage.  Their ultimate goal is to help Alex become independent- as every parent desires for their children, and as we desire for Royce.  

Read it…and follow her blog too!
(www.downsyndrometeenager.blogspot.com)
You'll grow from them, I promise!  


***************

Reviewed by Amber Malmberg

Blog: This is My Life...And This is Joy!

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

"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