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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