On Friday, Special K had her first science fair. I spent Sunday afternoon with her and two other girls trying to get them to write a paragraph each for the joint project on sundials they shared with Special K. I was pleased and proud to see that their project had more of their own writing and drawing than most including up to fifth grades. I really wanted it to be their work. More importantly Special K seemed very proud of her work and showed it to a bunch of people. She also took the time to look carefully at a lot of other science fair projects.

On Saturday we all went to the Festival of Books at the Children's Discovery Museum. I spent most of my time outside with Hermione having kids read to us. Some kids whispered, but they all read the entire book. I found it sweet. Hermione and I braved the crowds or rather I did and Hermione stayed close to me. Special K led us to her favorite exhibit, Alice in Wonderland. My favorite was the jars and plates floating up on a screen which gave the illusion of falling down. Special K said she didn't see the illusion, but I did and Hermione stared at it for a long time.

Then we went to a party of twins, one of whom used to be in Little T's morning preschool class. Now both twins are in the afternoon class. Little T said "[names of friends] have left me." I told him that they hadn't left, just moved to another class, but he wasn't convinced until he got an invitation from the twin. He also chatted with another former classmate whose mom it turns out is in the process of applying for a CCI Skilled Companion. Very cool.

On Sunday we went to my niece's first birthday party. I have nothing but cliches to say how time passes and kids grow. We attended with a bunch of babies since my brother and his wife's friends are all having babies. I felt nostalgic and also grateful at how far we've come. I felt incredibly grateful for the state of Little T. I tend to forget how hard it was and here are these moms of "typical" babies. It put to rest for now the worry of why I'm tired. I'm tired this morning, but content.

On Sunday, we visited my parents for my dad's birthday.  It was our first visit with Hermione and it went well. 

Hermione lay quietly on the floor despite the fact I forgot her bone.  Of course she got up if I left the room unless I asked C to watch her.  Everyone played in my parents' fairly large back yard.  The kids played endless and varied games involving running -- strange variations
 on red light green light where you were a suloki on green light or a frog and a panda on yellow light.  Hermione played fetch and then got tired.  Then she ran with several sticks which I took away from her when she started to chew them.  Then got tired.  Then ran around a third time.  The kids never seemed to tire until right before supper.  My mom made Burmese curry for supper.  We left late around 10pm.

Hermione has really excellent house manners.   She carefully deposited in a pile of leaves hidden behind some bushes and the other kind on the one patch of bark in my parents' garden.  Of course I asked my parents beforehand if it was okay.  With a dog's strong sense of hierarchy and pack, she must know in some sense, these people are my parents, though what that means to a dog I don't know.  Clearly she got the message it meant her best behavior. 

It reconfirms her occasional attempts at home are a test of my leadership which keep going down as I pay her the right kind of attention.  Yesterday she looked at me and then at some crumbs of chicken Tacitos as she walked by so I praised her for ignoring them.  One of my guide dog handler buddies says this testing goes on for a few months.  I want to say I can't wait for testing to stop, but something stops me. Perhaps an awareness of the passage of time.  Perhaps a feeling that it may never.

I want to write more about the kids.  My dad read Little T stories and Special K got impatient and started reading herself.

A healthy girl who weighed 7lb.  My SIL is also doing fine.  They haven't decided on a name yet.  She has light brown hair and hazel eyes.  I can't wait to meet her!  

Thanks to morrisa I finally have three precious photos of three -- me and my two children where they're not crying. I swear they don't cry when I put them in my lap normally or for photos, but somehow they usually do when I put both in my lap for photos. Please let me know which you like the best.




Laughing



Smiling



Contemplative

Thanks so much Morissa!! I really appreciate your coming down and taking so many photos!!

We spent a relaxing four days socializing in a fairly mellow way with various friends with kids and including a small party where Special K ran around Little T in the living room and Little T laughed at her. We ate lots of chili at the annual local chili cookoff.

I read several freelancing books like the Renegade Writer. After much banging on the keyboard, cutting and editing, I wrote several queries. On Wednesday I wrote the bulk of the article I was querying. Heh. Well, I need to write most of the content of the article anyway for my book. That's the beauty of it. When I sell the article to a magazine, I will tailor the article to the tone and style of the magazine. I will send my queries off once I get permissions to do quotes.

I spent Saturday and Sunday morning alone with Little T. C and Special K went on their annual camping trip with some other families from our playgroup. We all had a lovely mellow time. Little T basked in all the mommy attention and smiled and laughed most of the time. Even at bedtime, his fussiest time he didn't cry, too bemused at the novelty of having his mommy put him to bed. C and Special K hung out and played with all the other families.

I really enjoy being able to spend time alone separately with each child. I spend time with Special K every day when Little T takes his nap and Little T gets his time when Special K goes to preschool. I like how C and I can take one child or take both children.

I'd been feeling vaguely wistful that a friend of mine was pregnant with her third child. Before we had any kids, C and I had originally planned to have three children. Then after Special K was born, I wanted one and C talked me into two. But the mystery third beckoned. I wondered what a third would look like. I still thought having a third seemed crazy with all Little T's medical needs, but that reason always seems lame. Not to have a child because your second child is so demanding is not a satisfying reason. It doesn't give me the sense of completeness I need to say "We're done."

But this weekend gave me a sense of peace. I love my family the way it is. We have four different but compatible personalities. Fortunately C and my complementary personalities combined to produce siblings that not only get along for the most part, but seem to genuinely like each other. The mystery third's personality could shake things up. Three or five's an odd number that leaves one out and we're definitely not having four. So we're done. As we say at Bryn Mawr, "done is good." Are you happy with the number of kids you have now? Why or why not?

Poor C is sick on Father's Day. He had a fever of 100.4 last night. His fever is down to 98.9 now, but he watched Brazil beat in Australia the World Cup then went back to bed.

I had a pretty social three days with lots of time in a car.  On Sunday we drove to Davis for my dad's birthday.  We gave him three photos of the kids and one of my mum and Special K, because it's so hard to get decent photos of her.  Imagine them in plain metal frames sitting on my dad's desk next to me high school me.   I gave him this photo on the left here. More photos are below

On Monday we went to the birthday party of a kid in my mother's group.  We've known this kid since she was a baby.  Now she 's four, has a brother and another brother on the way.  We were extremely late, because Special K and I shopped at Target.  The birthday girl needed a present.  I also had other things to buy, so the trip took over an hour. 

sunyata__ kindly gave me a ride to plantgirl's place for her bbq.  It was a lovely evening includingsolomita and endokam. I also met girlpurple and her husband.  And last but not least someone whose RL name is one letter off from my RL name.   I found this rather amusing.  She had also dyed her hair "hot tamales" red literally hours before she arrived.
( The rest are below )

Sorry to be so quiet. Kite flying was excellent. The winds picked up our kite and it flew high with little effort. In fact Special K was a little disappointed, because she kept wanting it to crash. Little T has been cleared for limited contact with people and we figure that meant Mother Nature. So he scooted about on the dirt with great joy. He kept trying to head for the puddles. I stood in front of them. He was too delighed with his new found freedom to care much. He flung rocks at the fence. Best game ever! I'd forgotten what joy Special K took in such simple things.

On Monday I crashed to earth. We went to his Gastroentrology appointment. Always disappointing. He never eats enough. Never grows at all. Never gains enough weight. I've written a lot about that before. What I haven't been writing about. At least not much, because it's utterly gross and grim to face...every morning he vomits. And I mean vomit, not baby spit up, but full-on retching that involves his entire body. What a horrible way to start your day!

His doctor prescribed Reglan. His food sits in his stomach from night until morning instead of being digested. You can imagine how we know this. Reglan works great except there's a small risk of side effects that it can cause neurological problems like loss of balance. Let's hope that in this, Little T is not the exception.

We also received the full bill of repairs for my house in Oakland. Very sad for me. I've gotten over thinking it's my fault, but it still makes me sad. And I needed to escape for a while, so I played lots of World of Warcraft when I had computer time.

Little T's platelets went down to 176, but continue to be normal as does his fibrinogen. His tumor continues to shrink. His MRA confirms it's shrinking. The process seems to exhaust poor Little T, because he'll take 7 hour naps then sleep through the night.

We've made our decision, so at last I can post publicly about it. I've referred to a major financial decision. It was also a tough emotional decision for me. Well, we've made it. We've decided to sell my house in Oakland. I bought it ten years ago. She was built in 1912 and has been an old friend to me. I've been renting it out for the past five years, but our tenant just moved out. She's in excellent shape for her age, but every house needs maintenance and we have enough to look after.

We found excellent realtors who will take care of getting the house ready to sell and of course sell it for us. They deal with a lot of elderly folks who are moving out of their houses and into retirement homes. Of course we're not in that situation, but in our ability to deal with selling a house and our emotional state, somewhat similar. One of their references was a realtor from a major realty company. He used them when he thought he was dying and needed to sell his house. He didn't use anyone from his company. He used them. What better endorsement could I ask for?

Those of you who know me from back when I lived there may remember what lovely parties I had there. I'll really miss her. But I also feel it's time to let go.

We still haven't decided what to do with the capital gains -- whether to buy a like-kind property or eat the taxes. And while this has been a huge headache, I feel very grateful and privileged that I had this house. I couldn't afford to buy it now as a single person. I'm thankful to my grandparents for leaving me a bit of money, so I didn't have to scrounge around too much for the down payment. And to my parents for instilling in me the value of saving, so I saved enough to afford to buy ten years ago. The hardest part about selling is that I know I won't be able to afford it if I sell it now unless we make a lot more money than we're making. But I can't see myself retiring there anyway.

And I guess I have to trust that we will find another house. Our current house is okay, but it doesn't have a house spirit. It's very convenient in terms of its location and its newness, but as C said "it's not a home". I told C that when we can (which is definitely not now) that we need to find a home. He agreed.

As the Beatles song goes, I've been getting by with a little help from my friends (and my family).

Yesterday Little T got among his best platelet numbers so far this time -- 146, fibrinogen was 156, so I hope his course of vincristine will be short. He cries more and I think he's lost some weight, but so far (knock on wood) he doesn't seem to be losing his voice/hair and his pain seems manageable without drugs. The effects seem to be cummulative, so I hope the tumor responds as well as it is now and he only needs four doses like they're telling us.

On Saturday our respite care worker bailed on us, because Little T has a cold. They're not supposed to babysit kids who are "sick". How that's interpreted is left up to the respite care worker.

On Sunday my parents came to visit for supper. My mom helped out a bit too which was nice. On Monday we visited our friends Jenny and Sam. Little T had a great time pulling up on their stuff. I also did a bunch of shopping and bought some art supplies for Special K and a pile of binkies for Little T among other things.

I've basically been dealing by not dealing with too much. I got overwhelmed and started having bad thoughts. I hadn't thought them for a long long time. Not since college really. It just means I'm too overloaded and need to cut down on my responsibilities. Since I can't cut down on my family obviously, other parts of my life go dormant. And I'm afraid part of that (at least from the standpoint of my readers) is not posting here too much. When I get on the computer, I can choose whether to write, or to post here, or to play World of Warcraft, and lately the complete fantasy has been winning. I know this phase will pass. Because both C and I played WoW intensively around Christmas when things were really bad. Then things got a bit better and we got tired of it and did other things. C is already showing signs of getting tired of things as we're starting to resolve our financial thing. Though it still majorly stresses me out.

I had a lovely time at Thursday dinner with my friends, and a lovely dinner with my family last night. Both buoyed my spirits, as did venting here. C and my mother both commented that I seemed more my cheerful self. However I've caught yet another cold, so I have a sore throat, slight cough, and feel pretty low energy and a bit hazy. When I climb the stairs, I feel out of breath. I'm not that out of shape. I'm just sick. Bleagh. But I still feel more cheerful than when I was healthy last week. Life just seems more manageable somehow, though nothing has materially changed. Maybe I'm just delirious. ;)

I want to write about my mother's trip to Burma, but I can't concentrate too well. Feel free to nudge me about if I forget after I'm feeling better.

C took me out to dinner for my birthday so we actually got to spend a couple hours alone, a rare treat these days. C gave me the new Madonna album "Confessions on The Dance Floor" It goes back to her old 80's dance roots, except as C says "now she can sing". I enjoyed the album, especially "Hung Up". C also gave me some amber.

Thanksgiving was somewhat stressful. No family drama or anything. Though we did have an expected visitor who stayed on Friday for 4 hours. We could only stay one night, so that cut down our family time a lot. It's very difficult and stressful to sleep with Little T. His pump is very loud. He wakes up easily, so he woke up when we came to bed. Special K sleeps with us and gropes us in bed. So nobody slept well.

First Non-fiction Manuscript
26,146 / 80,000 (32.7%)

The kids are laughing together at some joke known only to themselves. Little T doesn't cry when he falls down and his head hits marble if his big sister is there to watch. It amazes me how well they get along. I remember that my younger brother regarded me with adoration when we were kids, but I also thought he was rather a pain until he was sent away to boarding school. Special K seems to really enjoy entertaining her little brother. And bossing him around. Now that part I did enjoy. "Here's your baby shark that you must play with." And of course he does. Then they both laugh again.

C sent me this article just after wrangling with T's medical bills: Treated for Illness then lost in a labryinth of medical bills.
It spurred me on to write more.

I wrote 1000 words today of my non-fiction book. It gradually coalesces into a sleek shape all its own at 10,778 words.

On Saturday we went to the first annual FireFighter's Pancake Breakfast. It reminded me of the pancake breakfasts I went to in my youth. Special K had a great time wearing a plastic firefighter hat and climbing fire engines. Little T loved scooting about on the straw and rolling a small pumpkin about.

On Saturday C and I had a lovely dinner at Jardinere with my dad. Then we all attended the opera Rodelinda which was done by the same people as Alcina. Alcina was memorably awful. It featured folks in leather costumes writhing around on the floor. Rodelinda ended almost every scene with a man on the floor. The first act no-one could sing an aria without at least three other people doing something else completely unrelated in the background. I guess they feared we might get bored. I found it distracting. I did like the 1940's noir set, but I disliked the Mussolini references.

I also hate when a producer blatantly ignored the libretto. If someone sings "I embrace you." Then she should be embracing someone literally or figuratively. But the second and third act are much darker and the ethos of the production seemed to be that it was okay to let the singer just sing if they were singing something sad.

I wrote 600 words on my nonfiction book today. It's up to 8400 words now. I think it'll be 85k. 79.1k to go. I also revised "Cascade".

C and I went to Bambuddha Lounge in SF last night. It describes itself as a "hot spot" which usually means it's too cool for us. It serves fusion Asian cuisine, but it was delicious. And it had an amusing mixture of forced retro and Asian stuff that I think of as SF culture. Outside was a drive-in motel which was still painted in the retro 70's colours, but had fresh paint and electronic doors. Arranged outside were funky sculptures and a bamboo garden with black and bright colours. We didn't sit outside, because it was a bit chilly and we also didn't have dyed hair.

I didn't dye my hair in my youth. I never regretted the decision, because I'd have to bleach my hair to do it and I wouldn't want to abuse my hair that much. BTW the only colour I'd want would be purple. I'm still deciding if I want to dye my hair now that I'm older and it's turning white. It's a nice silver white, so I feel lucky.

There was a live DJ, but no-one was in the DJ area. Some Asians lounged outside wearing Mardi gras beads with cups. A few with purple and red hair. They all looked cool and cold.

We had the fastest service we've had in a while before an opera, so we made in plenty of time before Girl From Algiers started. In many ways, the opera seems similar to the restaurant with a silly fusion of cultures. It's a silly opera, though unlike the restaurant it has an underlying seriousness and patriotism. I thought William Burden as Lindero was particularly touching. I was a little annoyed, because even though we have season tickets, we got the second billing stars for this opera: Isabella and Mustafa. And I found Isabella to be second rate. C found her funny, but I found her voice to have a slight burr in it, which grated on me. Mustafa had great antics, but his voice wasn't as robust as I would expect for the part.

However the set was wonderful with a great 20's storybook Indiana Jones feel with some good playacting to counterbalance the repetition of the silly phrases. Sometimes particularly SF opera goes overboard with the playacting, and you miss the words of the opera, but I think this production had the right balance. They let the singer sing the phrase the first couple of times and then start buffooning.

Actually William Burden transported me. Sometimes I think to myself, going to the opera is such a PITA. It's expensive. It costs a lot of time and money. Sure I get to go out with C, but I could walk with C to a restaurant downtown. But when I listened to William Burden singing about missing his love, I was transported back to a time when I missed my long distance loves. Okay it was better than that since they were never perfect operatic lovers. So we had a wonderful evening. Unfortunately the opera was almost 3 hours long, so I was too tired to drop by my brother's birthday party. But I did think of my brother while I was at the Bambuddha Lounge. Because he would have enjoyed the place.

This is a meme that I got from owlmoose. I'll try to provide facts that aren't on my web page or in my journal

1. I loved to stare at punk rockers on the bus in Chelsea, London where I spent my early childhood.
2. The first story I ever wrote was about meeting Mother Teresa in Calcutta.
3. C and I come from mirror universe families. I'm the eldest girl of girl boy girl. C is the eldest boy of boy girl boy.
   
4. Bee* and me don't get along. I'm allergic to bees to the point where I keep an epipen. When I eat beef, I literally throw up. I also hate beets and beer.
5. I have had season tickets to the opera since 1995.
6. I had a horrible crush on Mr. Spock from Star Trek when I was twelve.
7. I'm not afraid of heights. I'm afraid of jumping. I'm not suicidal in any way, but when I look off a bridge or any tall building, I feel like jumping off. Sometimes I dream I jump off buildings and I start to fly.
8. My favourite numbers are 13 and 42. 13 because it seems witchy to me and 42 because it's the answer to life the universe and everything.
   
9. My maternal grandfather was a Burmese diplomat before the military junta took over.
10. I've travelled all over Europe, North and South America, and parts of Asia, but I've never been to Africa, Australia, or Antarctica. I've always wanted to go on a safari and to the Great Barrier Reef. And I will when we can travel again. I'm not sure about Antarctica.
11. My mother forced me to take piano lessons as a child and I hardly ever practiced. As as result, I can sight-read pretty well, but I'm an awful piano player.
12. I prefer to play computer games with someone else. I don't mind "watching" if I can kibbitz. In fact it's usually easier for me since a lot of games are frustrating for me to play with my movement disorder. Not that I have time to play many games these days.
13. If you judge favourite movie by number of times most watched, then it's Casablanca. Otherwise I think it varies. And see below.
    
14. Other than a few memorable movies like Casablanca, I tend to forget the plot and dialogue of most movies a few years after I've seen them. C finds this shocking. I think it's great. I get to see a movie over again and it's like new.
15. I've been misnamed a variety of names in my time, but the best name I was ever mistakenly called was Athena in college. I didn't correct her and it took her months to figure out my proper name.
16. I like tea tastings and drinking fine tea on occasion, but every morning I drink Tetley tea. It's comfort food for me.
17. My favourite colour is purple.
18. Before I had kids, I used to think vomit was the grossest thing. Now I'm pretty blase about it.
19. I have hyperflexible ankles which is supposed to be related to my myoclonic dystonia, so I've sprained both ankles a lot. I've reduced the number of sprains in recent years by doing ankle exercises after each sprain.
    
20. I was asked to be Water on a MUSH, just because someone wanted me to be part of four elements. Then later I discovered one of the meanings of my name Thida is Water.

That was harder than I thought it would be.

After spending hours and even days talking to people, casting an invocation and giving a speech at my brother's wedding, I'm tired and even a little dizzy.

His wedding ceremony was in the "meadow" really sea grasses at Asilomar in Monterey. The day of the rehearsal was overcast and gray and beastly cold, but the sun shone brightly on the wedding day and even in sleeveless silk tops we bridesmaids were warm. Of course the bride was beautiful. It was lovely to see all my English relatives, but unfortunately we were incredibly tired, and it was a three-day affair. And after the first day we were already exhausted.

Special K ran around delighted and smiling and occasionally collapsed into a few meltdowns, because she stayed up until midnight and took no naps. She loved playing with her cousins and wandering up on stage during the speeches. When my uncle asked if anyone knew of any reason why the couple could not be lawfully wed, Special K said loudly "I want to be loud!". While the bride's family and friends were singing during the service, Special K and some of her little cousins sang "Twinkle Twinkle Little Star" a little distance away. Little T laughed and smiled as long as we were holding him and cried if someone else held him or he was in the car. He tweaked a lot of noses over the weekend.

I cried on the way home from Little T's hand apt, because the hand surgeon told me that Little T's left arm probably wouldn't improve much. I wasn't going to cry. I was going to just tough it out. Then I thought to myself "If I were my friend, would I think it was okay to cry?" So I cried. Not as much as I thought I would. I didn't have any particular dreams for his arm as such.

It did really hurt to hear that part of the cause might be brachioplexus. I'm still letting go the small voice that blames me for not making the horrible OB do an ultrasound on Little T's entire body and not just his head. When I was admitted, the nurse examined me and probably felt his arm and asked for an u/s to see where his head was. The OB on duty very snidely agreed and just waved the wand briefly over his head. I had a fleeting desire to ask to see the entire body, but it seemed silly at the time, so I didn't ask. If she had, she would have seen his huge left arm, and we'd have both been spared an incredibly traumatic birth. Even if she had no, I'd have felt less regret, because I'd have done every possible thing I could. I so rarely regret speaking up and asking for what I want, but there it is.

And that reminds me of my uncle's question "How do you cope with all this?". He asked me as we were sitting at the reception of my brother's wedding, which no doubt influenced my answer: We have some choices in life, but a lot of our choices come as part of a package deal. I didn't grow up in the richest country in the world, but I choose to stay here. I chose C to be my husband. I'm happy with those decisions. Even knowing what I know now, I wouldn't want to choose someone else. I choose the entire package.

And I didn't choose that horrible OB and probably she'd have just made fun of me for asking to see the entire body and refused. I went to the hospital in labour, but not active labour, and my water had been broken for just two hours. It was also my second birth and with my first, my sack had not broken until almost when Special K was born. Even so, the OB insisted that she give me pitocin. I equally insistently refused. I said I'd go into active labour on my own. I was right. And pitocin might well have killed Little T. So I got the big thing right. She got angry with me and that clouded her judgement. I think she labelled me as a "difficult patient" and ignored her nurse who noticed something was wrong.

For some reason, the hand surgeon asked if I wanted to have another. We have thought about it. He said "It's not hereditary." I know that. And unlike perhaps many able-bodied parents, I never had the dream of the perfect child. And I still wonder if Little T might not also have my movement disorder as well. Special K doesn't appear to. I just don't know if we can handle Little T and Special K and a third child. We were thinking two kids before Little T was born anyway. But never say never.

And I realised it's so much his arm that bothers me. It's other people treating him badly. I mostly want to spare Little T a painful childhood. Because I know what it's like to be teased mercilessly because you have a disability. But at least I can provide him a soft place to land. I already know he's a very strong person and there's just something about him that attracts people, charisma if you will. I think if we can get him through all these hospitalizations in one whole piece and that's still an if in my mind, he'll be okay.

I'm normally a tea drinker, but I've already drank 1 and a bit of coffee today. I need it. I'm incredibly tired, but I did get some sun as I went with the bride and the other bridesmaids to choose flowers. I sat on a bench and gazed at the hills. I drank coffee and I chatted. I wandered through a corn maze that smelled delicious and ambled along a chamomile labyrinth that was surprisingly relaxing. I'm ready to read an invocation for my brother's wedding later this afternoon.

Special K was literally jumping up and down on the sofa cushions at midnight while I was falling asleep on the sofa at Misha's after rehearsal party. Of course there's a reception and then there's an after reception party too. Off for a walk on the beach then a nap if the kids let me.