The Hailey Herald

The Hailey Herald

Tuesday, January 15, 2013

From Grief to Celebration by Margaret (Gary) Bender...book review

I've put off reading this book for awhile.  I'm not sure why.  I think it is because I haven't gotten into a good flow of reading anything other than emails and blogs.  Short excerpts into people's lives.  I follow Alex's blog rather faithfully.  I love seeing a view into the world of a teenage girl with Down syndrome.  Sometimes it calms my fears of what the future has in store for Hailey.  Occasionally, it exasperates my anxiety.  I think Gary sometimes gets a kick out of scaring us moms of younger girls with DS...she's been through it.  The stuff none of us are looking forward to...bras, puberty, other teenage girls.  Those are a few of the things that cause me nightmares and keep me awake at night.

I went with my husband to a basketball game on our anniversary.  The downside of getting married in December to a man who referees high school basketball...every year your anniversary doesn't fall on a Sunday, there is a good chance you will skip celebrating your anniversary...change your plans to a lunch date...or go with him to his game.  I don't particularly get into games I know nothing about either team or know no one on either team, so I downloaded the book before we left and read it while I watched tuned out the game.

If I wouldn't have known better, I would have thought Gary was in my head...or she was actually writing our story about Hailey and not her own about Alex.  Even though we are well beyond the grief/grieving stage, it was refreshing to read Gary's honesty about those initial feelings.  To know I'm not he only mom to blame myself...that I let my husband down or that I failed my family.  those feelings weighed me down at first and I thought I was crazy...guess either I'm not or Gary and I both are :-)

I loved her describing her experience with 10 verbs. I had to laugh through part of the Research chapter.  Gary commented that there was a pattern she noticed to conversations with families that had children with Down syndrome...they will bring sunshine...make you a better person...enrich your life.  She said she thought they had all drank a magic potion that caused them to say the same thing.  I chuckled out loud when I read that part.  I remember thinking the same thing!  Gary then went onto say, "But within six months I learned I was wrong, more wrong than I had ever been.  I guzzled that magic potion and can now say those words as fast as I can say my own name."  After Hailey was first born, I would roll my eyes when people would tell me those things.  Now, I find myself saying the exact same things.

I, too, get annoyed with questions that arise from ignorance, but of course, I try to not get too snippy or rude in my response because a mere two years ago....I was ignorant.  I didn't know anything about Down syndrome.

Gary's book is of course, written from her perspective of raising her daughter, Alex.  I think it is a perfect book for new parents of children with Down syndrome.  I truly wished I would have read this book when Hailey was much younger, but before her heart surgery I refused to focus on anything other than her heart and her weight gain.

Thank you, Gary for sharing your story with others and for your honesty! I'm positive that I will continue to follow her daughter, Alex, and ask Gary for advice as I muddle through the years of parenting my little hurricane.

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