Now with its own blog!
I love Free Rice. Maybe it's because I achieved the maximum score of 50 and gave 570 grains of rice to UNICEF.
When I think about it, 570 grains is a pittance, but I loved playing the game. It filled me with nerdy joy, and I even learned a couple words too. I believe this is the first time my large vocabulary has directly resulted in doing good. I'm working on doing it both more indirectly, but today with both kids home from school on holiday is not a writing day for me.
I went so far as to call Samsung and talked to second tier support aka technical support. After several minutes of back and forth the guy told me with some surprise like "The models today have curved handles." Oh!! I look at Lowes and there is the fridge perhaps of my dreams in all its shiny beauty.
I also realized I've gotten into the bad habit again of telling myself I'm not a writer because I don't write. I do write every single darn day. Most of it is stuff directly for Little T. Letters and plans. Some of it is blogging. Today's writing besides blogging was to write a letter for myself telling Paratransit why it's unrealistic to expect a person with a movement disorder to put in car seats. Then maybe I can actually go places with the kids by myself that is not walking distance of my house. What a concept. At some point I will get through the mound of paperwork needed to get the help Little T and I need to just live our lives. But instead I spent my time on the phone about shiny fridges so someday I can open my fridge door without pain.
Rob Brezsny wrote once "Money can't buy you happiness but it can let you borrow it for a while while you figure out to get it for free."
Yesterday we bought me a shiny new laptop. See how it shines. Sturdy magnesium chassis a label stuck next to the touchpad reads. No shiny. Sturdy too.
I used to use my husband C's laptop but its power supply keeps dying and usually it's dead just when I have an hour to write. I must confess that 80% of my writing has been writing stuff for Little T and I mean letters to bureaucrats and doctors on his behalf. The other 20% is blogging. The only way I seem able to write these days is to leave the house entirely away from the numerous Little T letters that keep wanting to be written.
Once away other things ask to be written but I have no laptop. I need to rewrite my picture book. And I have a novel but I have not actually worked on enough to know what is yet. Just who the characters are.
My nonfiction book sits there waiting impatiently to be finished but I tell it that I just can't. We're back in hospital hell. And the book revisits hospital hell in graphic detail. "More fuel for me" the book says in the candid tone it is written. "I think I have enough material and I need a bit more distance." But it will get finished. I just need. Well I'd like to just get the hell out of the hospital.
Tomorrow we will literally spend all day in the hospital with our son who has been deliberately kept awake. Tests will be run. It will probably be hellish. The only bright spot in this otherwise dismal day will be the arrival of our WII. Oh and we bought WII play yesterday and we'll buy another WII game. Ye gods I had no idea these video games systems were so expensive.
Little T turns three next month. For the first time ever we have bought one of those party packages at a party place. Money buys me time and the party we had at the place for bigger kids made Little T happy. It's also a celebration that Little T can actually go to such places.
I also bought a package for Special K for April. She wanted one this year but by the time Little T was clear to attend such places the place was fully booked.
We also test drove a Honda Odyssey and Toyota Sienna. So clear who wins. It's our bid to trade money for the ability for me to drive again. We'll see if it works.
So I'm doing my part to keep the US economy afloat.
And I hope it lets me borrow some happiness for a while. But I would trade it all for better health for Little T. Unfortunately that I can't seem to buy.
She's Such a Geek is now available in stores. I just saw two copies in my local book store. It's also available on Amazon.
My essay "Gimp Geek" appears in the second section of the book right before an essay by Violet Blue the sex writer for the Chronicle.
The anthology She's Such a Geek now has a group blog and already has some interesting posts. The anthology's coming out in November. It contains my essay "Gimp Geek" about my life as a computer geek with a movement disorder.
I spent three mornings with Mary Anne ostensibly to write, but no actual writing occurred. We had a lovely time talking and I met one of her writer friends. Actually I probably needed to talk.
We went to a mellow potluck on Wednesday. I met several bloggers from Silicon Valley Moms Blog and got my photo taken. I already wrote about my Sunday brunch. Previously a social situation in which I had to catch up or tell folks about Little T's medical issues would make me feel uncomfortable and unhappy. But I'm starting to feel more okay with it. I notice the people around me aren't comfortable, but the topic itself isn't comfortable, so why should they? I'm conscious that I prolly talk a little longer than people want, but I think that talking longer has gotten better the less I steel up to speaking and spill over like a dam breaking.
I interviewed Judy Winter on Wednesday. She was inspiring but still no writing.
My sister came down today. She said she was going to read my book proposal. And here we come to the crux of why I'm bothering to do the book proposal and not write the book first. I need deadlines. I edited my book proposal yet again. Minor tweaks. We talked about it more.
Writing good. Check. Concept clear? No as clear as it could be. I'm very clear on the concept, but the book proposal could be more clear. Will it never be finished? I'm soo sick of it. And yet I'm still excited about my book.
Why on earth didn't someone sit down years ago and tell me "see Thida writing is like parenting." The daily grind, well, the discouragement, the seeming to do the same thing over and over again, it's awful, terrible. Sometimes you wonder why on earth you're doing it. Inner voices and other people line up to tell you how inadequate you are. Your success or failure is due to your hard work, but is also due to factors completely outside of your control. But you live for those moments it's so beautiful and so right. You do it because you have to and because it changes your life and you really want it to change other people's lives.
And yes, I'm back to writing my book again.
Woo hoo!! I'm very pleased to announce that I sold my very first piece of writing, a personal essay "Gimp Geek." It will appear in the anthology She's Such a Geek due out in November from Seal Press, an imprint of Avalon Publishing.
I hope the title of the book is a propitious start to my writing career. I'm also excited about some of the other writers and fellow geeks who will be in the collection with me.
I'd like to thank C most of all for reading the story over and over again especially when it was just to tell me it would get better, Annalee and Charlie for editing it and telling me to make a more satisfying ending,
I'd also like to thank my friend Mary Anne who believed in my writing over ten years ago when I was incredibly shy about it and very far from wanting to be published. Since then and to this day, whenever we talk, she asks me in a friendly voice, "How's your writing going?" Every writer should have a friend like Mary Anne.
I have a new title for my first non-fiction book. It has sat comfortably for over a week with me. I think this one will stick, at least until the publisher gets a hold of it.
On Saturday morning I met with a mom, a friend from my Haas days about one of the most difficult chapters of my book. When I told another mom I was writing this chapter, she gave me a horrified look and said with a pregnant pause "That's a weighty topic.". Frankly I agree, but it belongs in the book. My friend thought overall it had the right tone, style and content. Such relief.
I feel like a new mom to this book. I feel like the book chose me and it's not an easy child. It keeps me up at night. It makes me cry. It makes me relive a year I'd rather forget. Sometimes I feel just as bewildered as any new mom. But at last, with some helpful comments, the book proposal has passed from its ugly and awkward newborn stage to a more polished adult form.
As a new mom at times I knew I was winging it and I feared the authorities would find out this gimp had this baby girl and come take her away. I don't feel nearly as scared and insecure as I did in the first few weeks of motherhood. It is after all just a book. And I also know a lot more about writing than I did about motherhood. But I've also learned that just admitting it out loud helps a lot.
On Saturday I was pleasantly surprised. I half expected the mom to tell me 'bad things'. Instead she said it was really good. I'm competent. I don't suck. I accomplished something really difficult.
I still have a long way until a complete book, but amazingly I'm a third of the way there. Part of me knows how this happened since I sat there pounding away on the keyboard, and gods know the revisions have been painful, but part of me is as amazed as any mom. "Look at how it's grown!" I exclaim.
When I have time to put butt in chair, I'm writing or doing something involving writing. It seems to make me happier overall.
I submitted my breastfeeding article to Mothering. I never thought I'd say this, since before Little T was born, I'd rather stick a fork in my eye than submit anything, but I was glad to submit something that was done and I like. As we used to say in college, "Done is good." Thanks to C and
I'm ironing out issues of my non-fiction book proposal. The biggest issue I need to resolve is a title that clearly communicates the main theme of the book. I thought about it a lot, but failed in my first attempt. Titles matter a lot to me when I'm writing. What the publisher names it is a separate issue and I'm flexible.
I revised my science fiction story "Cascade". It's an experimental story, quietly twisted. C says "it's journalistic in style." It figures. I write mostly non-fiction. It's still not done either. I work on it as a break from my book.
Jane Yolen answered my question "How deep do you think the divide between children's and adults' publishing is?" in her journal. Thanks Jane Yolen.
I also critiqued my friend Mary Anne's new novel.
finished a couple more chapters of my non-fiction book. I revised an article about breastfeeding which I plan to send to a parenting magazine. I sent GREG off to two more publishers.
I signed up for the Foothill Writer's Conference.
We saw Little T's hemo doctor and she said that immunowise he's okay to do everything, which is great news. His blood counts were normal.
We also saw his GI doctor. He has lost weight down to 10.05kg. Some of that may due to losing the excess water he had from the steroids. He's grown 3cm to 76cm. His doctor says Little T is the size of an 11 month old. We had a long discussion about eating and growing. The upshot of it is it's a long long road and that we're going to gradually increase his dose of Prilosec to see if that stimulates his appetite. So far it seems to be working. He actually ate three bites of cheese for lunch as opposed to no lunch.
I thought the question was interesting enough to pass along. I also wondered Do you see the world the same way I do? Or are you visual, aural, or kinesthetic dominant like the textbooks say?
I don't think I'm visual dominant, aural dominant, etc. Those ways of viewing the world never made much sense to me. When I read a book, I read the words, and memories are formed. These aren't movies or songs or 3D or whatever anyone else has described. I read quickly, so I'm not consciously thinking about this. It's only later I realise I have these memories.
Memories are formed around emotions and feelings, events or characters. There's a single imprint of one or two impressions that form the memory. It could be a taste, touch, sight, sound, feeling, or words. Those are in sharp relief. Which one/s it is depends entirely on the context. With books, words are usually involved, but not always. Then the rest of the impressions are less well defined. Sometimes the sound is music I was listening to while I was reading the book...if I thought the music somehow matched the book. When I hear a particular song, I still remember a particular scene in a book I read as a teenager. Memories form chains. That book reminds me of a talk with my father related to that scene. Particular details stand out that are relevant to me and others fade away. I don't remember what my father or I wore, but I remember the cover of the book in detail and what my father and I said.
When I describe things in my writing, it's because that detail evokes a memory. And when I write, I'm thinking about that memory. Sometimes I decide the scene needs more detail, so I'll go back and explore more.
I used to read and write poetry when I was younger. Now I prefer the more total immersion of prose. Perhaps I'm just more impatient.
Little T platelets continue their slow climb upwards now to 100 and his fibrogen was 130.
His weight jumped up to 9531. I think he gained a lot of water, thanks to the steroids. His cheeks are as round as a chipmunk's, and his arms and legs seem pudgy, but are actually more puffy when you take a closer look. He's so short at 27" and he doesn't walk, so he can be mistaken for a younger baby. I sometimes get weird looks when I say how old he is. He turned 15 months yesterday.
Little T inspires me to keep plugging away at my book. I'm primarily revising the first three chapters, and I've had little time to myself this week due to various medical apts, and Special K's cough, so I've fallen behind on my quota. I also haven't had good sleep for two nights in a row. Last night Special K lay in our bed coughing. The night before I ate something that disagreed with me and I stayed up half the night worrying about things I normally just put out of my mind since worrying about them does no good and just adds to the number of things I have to keep track of.
I wish so much for my kids, but I can't will them to health. It's amazing how much sleep affects my ability to deal with stress. And how when Special K cries because she's coughing, it still breaks my heart, even though Little T has endured so much more without a whimper. And I'm too keyed up to take a nap. I'm eating chocolate in an effort to improve my mood.
First Non-fiction book
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35,063 / 80,000 (43.8%) |
I spent some time today writing a letter to my insurance justifying physical therapy with UCSF instead of the local PT company who has no clue what to do with me and my myoclonic dystonia. I've not been nearly as good dealing with this issue as I have dealing with Little T's numerous medical issues.
With some nudging from C, I've gotten better at doing some of the exercises in the handout the PT gave me. The handout says to take an hour a day. I don't see that as attainable right now. I can manage 15 minutes twice a day. I also think it's more sustainable for me to repeat the same set of exercises twice a day. I'm supposed to be stretching and relaxing tense muscles. I find it difficult to learn new things. If I have too many things to remember, I focus on thinking rather than doing, and I jerk a lot more. So I'm continuing my ankle exercises until Dec 15 making it two months of exercises. And I just added exercises to stretch my neck, back and pectoral muscles and one exercise to stretch my arms.
Little T has stretched too. He's started cruising again. He lets me walk him holding his arms again.
I wrote more today, so my manuscript is now 30,764 words.
I also managed to prepare and roast a chicken. All in a productive day.
Yesterday I posted Special K's birth story.
I caught up with my writing quota and am now even a day ahead. I wrote about death. I think the research I've done so far is enough for now. I'd like first-hand verification from an actual mother before the book is actually published, because it's that sort of book. However I realised I don't have to have it right now for the book proposal. It's a proposal, not the finished book. That's a big weight off my mind.
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29,724 / 80,000 (37.2%) |
This week I didn't have any effective childcare until today. By effective, I mean childcare in which Little T wasn't crying and rushing over to me every half hour. While he's on steroids, only our nanny or the respite care people he knows can look after him without making him cry. While he may have problems talking, there's nothing wrong with the child's lungs.
I thought leaving home might work, but that utterly failed. His sitter called me and asked me to come home, because he was "suffering", because he was crying so much. Special K took it very well since I was supposed to be spending time with her. I can't take her out unless someone stays home with Little T, because he can't be exposed to germs. And as is typical, I felt a mixture of pleasure and annoyance. I don't know if this makes me a good or a terrible mom. While it was terribly annoying to have to come home because Little T was crying, I was pleased with my boy's social intelligence. He was crying a frenzy with heaving dramatic sobs utterly convincing in his great suffering. He stopped crying as soon as I held him and told him I was staying. He gave me a look of great satisfaction and a big grin. I just read a blog from someone whose kid doesn't care who looks after him. Definitely not the case with my laddie.
I realised that I have written 90% of the first three chapters, but still need to complete the toughest 10%, which will probably take more time than I want to think about.
Part of what I need to write about includes death, which I didn't even want to think about until Little T was stabilized. He appears to be stable and up on a upwards trajectory, thank you very much gods. So far during this current round I'm not worrying that Little T is going to die. (knock on wood) But at other times Kasabach Merritt Syndrome and his infections have threatened his life. And I'm not even going to link back where I've blogged about it like I often do. It just drags me back down. And I'm also superstitious.
So I'm at the point where I can feel the book proposal is so close to being finished, but the work to get it done feels very daunting. I'm off to take a walk. It's partly to clear my head and partly for a good cause. I have a bunch of books that I want to try and sell at our local second-hand bookstore.
Little T's platelets today were 87, so really about the same. That's what I thought going in. But I didn't hear what I was dreading: he would have to go back on Vincristine. I'm very grateful for that.
C came with me and really it's far easier to ask hard questions when he's there. So I asked what would put Little T back on Vincristine. The short answer is his platelets would have to drop below 20. His doctor actually mentioned Vincristine when his platelets were 211, but she tends to be a pessimist. The time before, his platelets were down to 40 and she was envisioning them dropping down below 20. Of course the long answer is his platelets do have to improve over time, but he has some time.
In addition he could get a higher dose of steroids. He's on 2mg/kg and he could go up to 3mg/kg for a short time.
Sadly he is definitely immunocompromised on this dose, so he can no longer be in occupational/physical therapy in a group setting.
He lost about 50g. I think it's the effect of the steroids. He eats more and loses weight. What a great diet except that you
My writing continues. I caught up on the days I missed and my non-fiction book is at almost 24k now. I also finished an article on my breastfeeding experiences with both kids, which I plan to submit once I get critiques. Please let me know if you want to read it.
Little T's smiling and scooting again. I feel such joy that I'm starting to have my son back.
He says "gah" a lot. Gah means something in Little T language, because it has many intonations, but I just don't get what it means. I asked him yesterday if he wanted a bottle and he said "yeah." I haven't heard any more intelligible words since. The previous word I heard was "bye" on Thursday though C says he said other words to him. Little T now has a vocabulary of four words: hi, bye, no, and yeah. However he says at most one word a day, so nobody but C and I know he can talk. When Special K knew four words, she said them over and over to anyone who would listen. The entire world knew she could talk. She had one Special K word "meh", but she kept saying it until C and I got what it meant -- food. It's such a contrast.
I took a few days off. Kinda hard to write when you have to hold a baby. Also Special K is having regression problems i.e an accident once a day usually accompanied by crying. I guess it's to be expected. This is the first time she's had any real problems, but it's also the first time Little T's been sick and not gone to the hospital and she's older now and perhaps better able to understand. So I've been holding her a lot too. A friend's taking her on a special outing tomorrow, which I hope will help.
But I started writing again yesterday. My non-fiction book's at 21,205. I'm hoping to have my book proposal done by Thanksgiving, but it may be unrealistic given how much baby and child holding still remains in my future.
If you enjoy the show Lost, you may enjoy this Lost Rhapsody.
Little T's bruises and petechiace are fading. I take him to Hemo tommorrow. Something bothers Little T a lot. Probably his left arm, because whenever I move it, he screams at me. Actually he's screamed at me all day unless I hold him. I'm typing right now, because I have a respite care worker here. Thank the gods for that.
Yesterday I spent the entire day wrangling with our broken health care system in some form or another. I did get excellent care for Little T. I also emerged with a flu shot for Special K. I got special dispensation from the kids' ped to get it ahead of the flu clinic, which is two weeks away. I need to get us vaccinated before the Thanksgiving relative germ fest. So Special K got her shot today. She said "Shots hurt" with some surprise. I feel a little bad that the shot contains thimerosal aka mercury. But I'd feel even worse if Little T catches the flu and winds up in the hospital again.
However I failed to get anywhere in getting care for myself. I may end up paying for my physical therapy (PT) out of pocket. Through C's friend and Little T's OT, I found Nancy Byl a wonderful PT at UCSF who treats people with dystonia. I want to drive on the highway again. I need PT to retrain myself. Regular PT won't work. Telling me "do this" just results in jerking. And in fact when I had PT after my car accident, they just wouldn't do certain exercises with my upper body, because I would jerk too much. But tomorrow is another day. I just emailed someone else to get help with my appeal to the insurance company.
I also failed to get an apt with a local neurologist who specialises in movement disorders. I'm not sure if she's the right person to see anyway. I saw her in 1999 and she was very keen on brain surgery! At that time she told me to try a few drugs that didn't do anything for me. Her nurse suggested the Parkinson's Institute. I just gave them a call. Unfortunately they're not covered by any HMOs and it would be $385 a visit. We would cheerfully pay that much if we knew it would do any good, but no-one knows if my movement disorder is related Parkinson's. Maybe my maternal grandfather had it. But he was never officially diagnosed. It's all so frustrating.
But still, I started writing again on Wednesday. Back to my daily word quota of 500 words. Book's at over 20k now. I worked out a chapter outline on my non-fiction book. It will be 13 Chapters. Chapters 1-4 are basically done.
My mediamonkey playlist got me back in the writing groove. I'm up to 18,690 words. I'm 60 words away from rewriting my book proposal.
It's been an odd couple days
C's friend has calmed down, but nothing has fundamentally changed, so I feel the situation is only just waiting to explode again.
I read and critiqued a friend's novel that was wonderful, but also heart-wrenching.
I just joined a study that might actually help me with my dystonia. I'm scared to hope, but I can feel hope pressing against my chest.
Little T has started pulling up on everything. For weeks he would only lean up on the leather couch and haul himself up that way. He tried other places but couldn't quite do it and would cry at me to help. I tried to help and he'd scream at me more. On Tuesday Special K and I were doing puzzles on the coffee table, Little T had to pull and see. With huge effort, he pulled up all on his own. Now he pulls up as he never had any problems and he's working on cruising. All of this involves a lot of fussing and crying as he gets frustrated. He wants me to pick him up. I have a sprained ankle. I shouldn't pick up a 19lb boy especially one who's arching backwards. I relent more than I should. By about 6pm my patience has worn thin. C doesn't get home until 7:30. I try not to go crazy before then. Some days I succeed.
I got no writing done yesterday as I was so worn out with dealing with Little T that I slept through most of the time the respite care worker was here. C really doesn't understand how draining the constant crying is. Today I wrote about 300 words. I'm behind. I must borrow my quota from other days.
What I've been doing instead over the past couple days is to put together over 20 hours of music that makes me happy. We can play music on our Tivo, but without a playlist after a while, it mysteriously kicks back to Live TV. During the daytime that's a lot of bad tv. Now I have music for parties too. I feel a real sense of accomplishment. I made the playlist using MediaMonkey, which also makes me happy -- the name of the program that is.
