Book and Kindle Review

For Christmas I purchased a Kindle Fire HD for Cxdy.  He had an older Kindle keyboard, so once he received the new Kindle, which he absolutely loves, he no longer had use for his old one.  He offered it to me, and though it's grey and white shell looked rather boring in comparison to his new shiny gadget, because I'd never had a Kindle or any e-reader I told him I would give it a try. 

Well, last week I finally bought my first e-book for this not-so-fancy Kindle.  I purchased "A Good and Perfect Gift" by Amy Julia Becker (and I missed getting it free by one day!).  Someone had suggested it for mothers new to raising children diagnosed with Down syndrome on a message board at the babycenter.com website. 

But, before I discuss the book, I want to say that I love that plain little Kindle.  The color HD Kindle is so bulky and heavy, and the screen is shiny.  I think the little plain e-reader suits my needs so much better, as it's lighter, easier to hold, and the matte screen is easy to read.  And of course, it's so much easier to hold than an open face book.  It was a good experience.  I have a laptop, so I have no need for my e-reader to act as anything other than a book.  I do wish the screen had a backlight, though.  That is the only thing that I would want to change about it.  I look forward to reading more books from it. 

"A Good and Perfect Gift" wasn't everything that I wanted it to be when I purchased it, only because I was hoping for more detailed information on how things like state-sponsored therapy works, but had this book delved into those details it would have taken away from the author's intent, so I understand that.  I'll just have to find that information somewhere else or learn as I experience it. 

Becker is a well-educated spiritual woman.  Though there are theological references throughout the book, as an agnostic person I did not feel that this detracted from the quality of her writing or distracted from my relating to her process of coming to terms. 

What I did enjoy about the book was that the author was very honest about her emotions and how she dealt with them as she learns to accept her daughter's diagnosis.  Unlike me, she didn't find out her daughter had Down syndrome until after birth.  I know from experience that Ds is a tough diagnosis to swallow so I'm just thankful that it won't detract from the joy I feel when Clara (finally!) gets here.  Like the author, I've always valued intelligence and the intelligence of my children.  Now, like Becker, I'll just have to focus on a different area with Clara in which to build pride.  I'm sure Clara will be good at something.  Maybe painting?  Or just being loving?  But, again, I have the priviledge of working through these emotions before Clara gets here.

Becker asks some tough questions in her book.  She wants to have another child, and does, but through that process well-meaning friends, doctors and acquaintenances suggest precautions against having another child like Penny.  In response, Becker asks herself what I would ask, which is: Meaning, I wouldn't want another child like this child?  Because everyone loves this child, we know this child is special and a gift, and we tell ourselves that aside from being different, there is really nothing wrong with this child, so what would be the harm in having another child like this child? 

 I have found so many blogs now where parents are advocating for their children with Down syndrome.  They want the world to know that there is something very special about that extra chromosome--and that if they, the parents, had the chance to change the chromosomal makeup of their children they absolutely would not.  So, why then, do we worry about the odds of having another child with Down syndrome should we decide to have more children?  And why does the medical community seem so eager to persuade us to terminate these pregnancies when the parents of these children claim to be so content, happy and spiritual?  Actually, the question isn't a question I ask myself because before Clara was even conceived I knew she was my last.  But still... if I wanted another child... 

One area where I do feel differently than the Beckers: they seem to worry a lot about what other people think. They worried other people would think they were irresponsible for trying to have another child because of the risk of having another Down syndrome diagnosis. Amy Julia worried about what people thought about Penny. Right now I've not had any concern about what people might think about Clara, but then Clara isn't here yet so I don't know if that will change. My hope is that it won't. But, I do worry about how I'm going to react when people act offensively toward us, and I know this is going to happen. I once chunked a can of coke at and went ballistic on a young man who referred to my oldest as a bastard. That was 20 years ago. Perhaps I've mellowed.

In the end, if Becker could take the extra chromosome away, would she?  In the end I believe her answer ends up being "no." 

I will point out, her daughter is on the high-functioning end of the Ds spectrum.  From what I gather her daughter is actually very intelligent, but because of her extra chromosome, she has to learn things differently and at her own pace.  For instance, she can communicate, but rather than speaking at the same age as other children, she learns to sign.  Talking comes later.  And she doesn't walk at the same age as other children, but it's suggested that this is because she's satisfied with sitting and doesn't feel the need to challenge herself to something more daring.  In fact, there is an incident in which Becker tries to challenge her by laying a toy out of reach and then walking away to see if Penny will try to crawl for it.  When she comes back into the room she finds her daughter has solved the problem by pulling the blanket the toy is on into her reach instead of attempting to reach it by crawling.  Penny is a problem-solver, which one doctor told her she would never be. 

I'm glad I read this book, as I feel it has me asking myself questions that maybe I was afraid to ask before, and it is important to me that I work through the majority of my emotions about Down syndrome before Clara gets here.  It was really thought provoking and I definitely look forward to reading more about Amy Julia Becker's journey in the future, as her child is still young--I believe 7. 

The biggest question for me is if I will one day appreciate that extra chromosome and feel comfortable telling the world that I wouldn't remove it if given the option.  I don't yet know where Clara will fall as far as the extent of her disability, so I don't feel I could answer just yet.  Actually, to be honest, right now I would say, "Yes, please take away the extra chromosome." My experience is yet to come, and my gut tells me Clara is a blessing to me, but will I ever be thankful that she has Down syndrome?  At this point I just can't imagine it.  But, I know I can love her.  I already do.  With all my heart.