Gadget Girl: The Art of Being Invisible – The Book Blog Tour!

May 15th
Wintry Words >> Excerpt

Bookwyrming Thoughts >> Guest Post
May 16th
Sab The Book Eater >> Review
Must Read Faster >> Review
May 17th
Lola’s Reviews >> Review
Carti nemuritoare >> Review
Books and Insomnia  >> Excerpt
Alexa Loves Books  >> Review
May 20th
Cherie Reads >> Review
Bookworm’s Multiverse >> Interview
Moosubi Reviews! >> Excerpt
May 21st
JennReneeRead >>  Review
Mythical Books >> Excerpt
Word Spelunking >> Review + Interview
Alice Marvels >> Review
May 22nd
Reader Girls >> Review + Interview
lilybloombooks >>  Review
May 23rd
Curling Up With A Good Book >>  Guest Post
May 24th
Tumbling In Books >> Review
Nazish Reads >> Review
Total Book Geek >> Review
Mother/Gamer/Writer >> Review
Froggarita’s Bookcase >> Interview
May 27th
Book Adoration >> Review
Reviewing Shelf  >> Review
Teen Blurb >> Review + Guest Post

Beautiful Screams

On working with the developmentally disabled, Japanese flamenco dancer Hiroki Sato says: “I loved working with people who couldn’t control their emotions…Their screams were beautiful to me. There was a part of me that felt I was always on the verge of screaming as well, that I was always holding back, so it was such a relief to be with people who just let it out.”

Read an article about him here.

Wheelchair Golf

Last fall, a municipal putting course opened nearby our house. According to the newspaper, construction costs were around 3 million dollars. At any given time, there might be four or five groups playing – hardly enough to support/justify the expense, I would think. Anyway, inspired by Ryo Ishikawa’s amazing/record-breaking score of 58 the other day (12 birdies!), we decided to try out the course.

Yesterday, it being a public holiday and sunny, too, there were lots of people – grandpas with kids, families with babies in strollers, couples on dates. I saw quite a few women in skirts and ruffles. At least two wore spiky heels.

We brought Lilia onto the course in her wheelchair. And here I should tell you that it’s not a professional-type putting course for serious golfers. The balls are colored, and the putters are short with big fat balls on the end – not standard equipment. It’ s more of a place for family recreation and exercise for the elderly.

Lilia did pretty well. It took her quite a few whacks to get the ball into the hole, but she could do it. We were all having a good time, and I was thinking, wow, this is something fun that we can do from time to time. But then, around the 17th hole, one of the retired gentlemen who works at the course came running over, smile on his face, to ask us not to bring the wheelchair on the green. It should be noted that we weren’t leaving any tracks. I’ll bet those spiky heels did more damage.

We finished the course with a bittersweet feeling. The public putt course is not for everyone, after all.

This Lovely Life by Vicki Forman – with a giveaway

Whenever I am in a gathering of women, at some point, inevitably, the conversation will turn to birth stories. I usually nod and listen silently. I might add that I had a C-section and that it didn’t hurt, but I never tell the rest of my story because I know it would bring down a pall upon the conversation. Nobody really wants to hear about how my twins were born at 26 weeks, how the day of their birth was far from being “the happiest day of my life” or even a day of regular joy, but an occasion filled with fear and a grand sense of failure. Nobody wants to hear how I waited until the day after they were born to go see them for the first time, and when I did, I didn’t feel a burst of maternal love. I thought they looked weird and scary, and I wondered if they would ever look normal. These are not the kinds of things that we talk about in polite company, and until very recently, not even the kinds of things that mothers were willing to write about.

Vicki Forman does, however, in her prize-winning new book This Lovely Life: A Memoir of Premature Motherhood. Vicki’s twins Evan and Eleanor were born at 23 weeks’ gestation. As the daughter of a doctor, Vicki was aware of the likelihood of severe disability should they survive, and asked for a DNR order, which was ignored. Her daughter died four days later, but her son survived with multiple disabilities.

Vicki writes with astonishing frankness about the following five years in which she learned to love her son without expectations as she sought the best medical solutions for his seemingly endless problems. She admits to telling off nurses and being rude to her brother-in-law and disobeying medical advice (like when she stopped using the apnea monitor because it went off needlessly in the night, and she had learned that by that stage ex-preemies rarely stopped breathing for a long time).

I could relate to many of these things. I, too, found that almost everything that people said to console me was the wrong thing. And at first I didn’t want to bond with other parents of multiply disabled children. And my medical vocabulary (in my case, in Japanese) expanded exponentially.

As my children were born in a Japanese hospital, I found many of the cultural differences interesting. If  I’d given birth in California, I would have been quickly introduced to a social worker and a spiritual adviser. Here, I was on my own. But after reading about Vicki’s anger and exasperation with the people who were assigned to help her, I’m not sure that having  a counselor would have been all that much help. 

Vicki’s husband, Cliff, is a Japanese-American, and through-out this book he is portrayed as kind, accepting, and patient. At one point, Vicki writes: “Where I wanted to flail and yell and lose my temper with everyone, my husband was staid and firm and in control. I don’t know how he did it. He once said, apropros of being Japanese, ‘My culture just accepts people who are sick and maimed. We take care of people when they get old and we take in people with disabilities.'”

I’ve been thinking about this ever since I read it. It’s true that families here keep their elderly and disabled relatives at home, but, from my American point of view, it has always seemed to be less out of open-hearted acceptance than out of duty. Shikata ga nai. (It can’t be helped.) Gaman o suru. (Everyone must endure their harships.) Mewake o shinai. (Don’t burden others.)  Maybe I am wrong.

At any rate, This Lovely Life gave me many things to think about, and also made me feel less alone in this world.

This book is also gorgeously written and full of wisdom – real literature. I have an extra copy – if you’d like one, leave your name here and I’ll do a drawing in a week.

Dream Come True

According to Amazon.com, today is the official publication date of Love You to Pieces.  Reason enough to celebrate, right?

But get this:  Lilia has learned to say “Mama”!

We’ve worked on this for awhile.  For a long time, when she wanted my attention, she called out “Ahhhhhhh.”  And then, after she got her cochlear implant, she called me “baba”.  She could hear the difference, but the “m” sound is really hard for her.  I had her touch my nose while I said “mama” so she could feel the vibrations, and sometimes she could do it, but when she tried too hard, it always came out “baba.”  The other day, she commanded my attention and pronounced “mama”.  She was very proud that she could say it without touching her nose.  I’ve been waiting years for this moment.  No one could have given me a better Mother’s Day gift.

Bittersweet

Only one day left of second grade.  A few days ago, I had a conference with Lilia’s teacher.  We talked about how she had become adept at counting on her fingers, and how she can now add and subtract triple digit numbers quickly and accurately.  We also talked about her inability to memorize the multiplication table, and how this will make long division in third grade very difficult.  We talked about how at ease and independent she is in her wheelchair, and how wonderful that she can go to the bathroom at school by herself.  We also talked about how she rarely uses her legs at school even though many therapists have told me that she looks like a kid who will stand and walk one day.  We talked about how she has not been able to learn how to speak, but she can understand a lot through lip-reading and listening.  We talked about how she can now recognize some written words and can now write some simple sentencesby herself, and also about the fact that the third grade Japanese textbook will be too hard for her to read.  Her teacher suggested that she study Japanese with the first graders.  It sounds more practical than pretending that she can keep up, while she gets in way over her head, but the girl has pride. 

I know that her cerebral palsy makes her different from other deaf kids, in ways that I’m still trying to figure out.  I feel like I’m standing on a divide – on one side, are teachers giving up, and the other is the shiny future I can give her if I push harder.  Or maybe it’s mostly up to Lilia and she will find her own way.

further evidence that my daughter is a genius

So today after school Lilia was rolling around on the playground with one of her classmates who was kicking a ball around.  He left the playground, but Lilia remained. I was standing on the sidelines, talking to her teacher about ways to help her remember words.  She was kind of going in circles, and I thought she might be stuck.  We went out to see what was up and she signed that she was making a picture of a face with her wheelchair tires.  She was working on squiggles for the hair.  I’ve seen her drawing in the dirt with a stick before, but this was the first time she’d tried to make art with her wheelchair.

“I’ll tell O-sensei (the art teacher),” Y.-sensei said.  We talked about how we could provide Lilia with paint and canvas and maybe a spare wheelchair just for her art!  Wheelchair art – why not?  The future is wide open before us.