Sunday, July 31, 2005

Special K climbs to the top & why I love 80's music

Special K climbed to the top bunk of her bunk bed and scared me half to death. I use the top bunk to store her outgrown clothes. So while she was up there, she also put on a dress and did it perfectly. Then she climbed back down. C had taken out the middle rung of the ladder to prevent her from climbing up. Well, that didn't work. So now he's going to put the rung in, so she's less likely to fall.

Yesterday Special K insisted on wearing her dress inside out and backwards to a friend's 40th birthday party. She also insisted on wearing her gum shoes. Her idea of a fashion statement looks like a ragamuffin to me. The host hired Tainted Love, a band that covers 80's music. Special K danced by jumping up and down. I danced with Little T. That was all fine and good with Special K, but when I wanted to dance by myself, she wasn't happy. I don't know why. I don't think my dancing is that bad. Maybe on some level, she knew that without Little T I was a little too free. And she wanted to make sure her mommy didn't run off.

Some of my best times in my childhood and teenagerhood were spent dancing to music. I particularly like New Wave music. I didn't really discover New Wave music until my frosh year in college when a friend gave me a handmade Depeche Mode tape. I loved it. I associate it with being wild and free. Even back then, I knew that though I had hard times, I wouldn't always be free to do whatever I wanted like I could in college. I traded freedom for responsibilities that I'm glad to have...most of the time.

Most rock songs celebrate an idealized youth, but 80's was in my youth. I like the silly mindless songs like "Tainted Love" and "She Blinded Me with Science." Yes, old Madonna songs appeal to me too. And that's what people play at parties. They don't play Pink Floyd. For me, music was a good fun escape. If I wanted angst as a youth, I listened to maybe a little Depeche Mode, but that was always with a tinge of irony. If I really wanted angst, I read a sad book. I still feel the same way. I do sometimes listen to songs on the radio and I like some new artists, but if you want to get me dancing for sure, put on some New Wave music. Do you love 80's music too? Tell me all about it. What music do you associate with your youth?

Blogging marathon

I read on another blog that she's going to participate in a Blogging Marathon. I'm not telling you who, because I don't want to encourage her. She's not the only one. 215 people have signed up. I think it's very silly. Basically folks give you pledges if you blog every 30 minutes for 24 hours. I'm already available 24 hours a day 7 days a week. I hope it doesn't break your heart that it's not for you. I hope 24 hour marathons are not a new trend. A couple months ago, I was asked to donate and run for a 24 hour relay for some charity that I don't remember. I liked the charity, but I refused to donate or walk, and I've tried to block which one it was, so I wouldn't be prejudiced against them. I guess my mind block worked.

Now don't get me wrong. I'm not against sacrifice. And I'm all for exercise marathons, because they give people motivation to get into better shape and also fundraise. But meaningless sacrifices just give people the false sense they're doing something great. Instead they could have done the same thing with less effort and spent the extra time making a meaningful sacrifice. If your charity is for sick children, why not spend just a fraction of the time you would have spent blogging 30 minutes for 24 hours to bring a meal to your local Ronald McDonald house. Or if it's for homeless people or a anti-hunger charity, serve soup at a homeless shelter.

No I'm not doing any of these things. If you've been reading, you'll know that dealing with my special needs son's day-to-day needs is about all the sacrifice I can handle right now. But you can bet that when I have the bandwidth to make other sacrifices, I will not consider blogging to be one of them. C disagrees with me. What do you think?

Saturday, July 30, 2005

Simon Saga

I meant to post this a while ago and kept forgetting. Sorry for my poor memory retrieval system. It's a thank you for fixing my template.

Please note it's a Norse saga. so it's alliterative.

Silly Simon
Innocent eyes
Masking mischief
Observing order
Nice nerd

Friday, July 29, 2005

Our nanny is wonderful

We had a very hard time finding a nanny. And we almost lost our current nanny. See this post for the full saga.

Our nanny is a real sanity saver! I probably would be crazy (or perhaps just more crazy) by now if it wasn't for her. The best thing about her is she takes everything in stride with a calm gentle cheeriness that fosters trust. Special K says "I want to marry [our nanny]." She has the patience and affection to make Little T love her. He's willing to laugh with anyone if I'm there, but on a bad day he screams loudly if I leave his side. Our nanny manages to convince him that his world won't end if I leave. She adores babies and he'll still be a baby for a while. She's not fazed by his feeding tube. If I leave her with just one child and I do that at least once a week for T's various appointments, she usually manages to get some cleaning done.

I haven't blogged about her as much as I'd like, but she just called me and asked for the start date of her employment for an apartment application. That makes me one of her employers on a piece of paper somewhere. So I think it's only fair that I get to blog about her.

April 18th was her start date. I hadn't realised it had been that long ago. It was just so much easier when Little T was in the hospital the last two times to be able to leave Special K with her. Special K will go with me to the hospital, but after several hours she gets bored and wants to be entertained. When our nanny was available, I could just spend the entire day at the hospital and focus on Little T. That was a godsend when Little T had sepsis and was in the ICU. Special K's pretty well behaved for a 3 year old, but healthy active little kids and ICUs do not mix.

I guess I'll have to think of a good blog name for our nanny. She's great, but not exactly Mary Poppins, (she's not English for one thing) so Mary isn't good. Will you give me some suggestions?

If you have a nanny, here's your chance to comment about her. If you don't, did you have a nonfamily caregiver that was important in your childhood?

Want your blog listed here?

I just put up a list of blogs. Please add a comment if you want yours added.

Thursday, July 28, 2005

Should doctors be barred from implanting more than one embryo?

The BBC just broadcast IVF multiple embryo use reviewed in UK. My heart goes out to women who need IVF to conceive as it's horribly costly emotionally and financially. But quoted in the article

"There is now considerable experience from Finland, Sweden, Belgium and Holland where the introduction of single embryo transfer has been associated with a marked reduction in twin pregnancy rates but with no reduction in overall success rates...."

I know there's enormous pressure on infertility clinics in the US to have good fertility stats. Unfortunately having multiples boosts their success stats if you count your fertility rate by each child conceived rather by each pregnancy. Only recently were the transfers of six or seven embryos banned. I think tranferring more embryos than a woman can naturally bear is child abuse.

It makes me wish again that health care was more government regulated here. I know the desire to have a child can be overwhelming. I've been on bedrest. I've had a very difficult birth. I have a baby who had life-threatening medical problems. And I'd do it all over again.

So if I were infertile and had no children, I could see myself signing up to have five or six embryos implanted if someone told me it would increase my odds of having a baby. I'd say I was up for culling if that's what I needed to say. And then I wouldn't do it. That's why we need the government involved. The government steps in to help people who can't make rational decisions. And I can't think of anything less rational than enduring painful expensive procedures to force your body into having an extremely high risk multiple pregnancy where one or more of the babies is likely to die, or have severe medical problems. Understandable, but not rational.

Strangely the people I personally know who have multiples achieved them through IUI, or naturally by being older. However this article makes me wonder if the IUI women didn't conceive multiples, because they were given higher doses of the drugs to increase the clinic's stats.

So I'd vote for the UK to only allow one embryo like the rest of the EU. Do you agree or disagree? Why?

Sleep deprivation & memory retrieval

I haven't whined much about how little sleep I've been getting with Little T
recovering from his surgery and waking up at night. The sleep gods tend to take revenge if I comment on my children's sleep patterns. But I'm going slightly mad from lack of sleep.

I tried to deliver some chocolate to a friend who's having a hard time. Last time I spoke to him, I asked "Did you move recently?" "No." he replied. "Oh, I thought you did." I said. "Why'd you think that?" I mumbled something about him having a housewarming party recently. He replied "Yes, that was a year and a half ago and you were there." "Oh." I said, rather confused.

I drove to his apt and on the porch was a cigarette lighter and 2 cans of Bud Light. My friend writes poetry and drives a Prius. This was definitely not his apt. I did have enough sense to call a couple of our mutual friends, but none were available. So I called C and asked "Can you check email to see where he lives?" C checks and comes up with the same address. "That's not right." I said and I described what was there. I asked for the date of the email. It was in 2003. C checked a later email. It was the invitation for the housewarming party. It was a different address. Fortunately this address was only a couple blocks away from the old address.

Now I know what happened. When my friend moved, I told myself to update my address book at his housewarming party and then forgot. My poor brain was trying to nudge me, but I had no idea what about. When I'm chronically sleep deprived, my memory often simply fails and I'm left asking silly questions.

Though inability to retrieve a particular memory is pretty typical for me. My memory retrieval system is good, but very context based. I can remember all the items I need to buy if I walk down the aisles of a grocery store and see the items, or if I know the store, the items near the items I need. If I miss an aisle, I'll forget to buy all the items in that aisle. Computers have been a godsend for my memory. At work, I used to carry around a Palm Pilot, which was my little context holder to jog my memory. I would put in enough cues, so that I could remember all I needed to know. What type of memory retrieval system do you have? What's the craziest thing you've done due to sleep deprivation?

Wednesday, July 27, 2005

Words of wisdom from Little T

I let Little T type for a bit and here's what he typed:
mnh om
What words of wisdom!
Mnh is an organization for enlightement.
And of course om is a yoga chant.

Celebrities won't admit to NICU babies

C and I were doing research last night for my children's picture book. And we discovered that as far as we know, no current celebrity admits to have their baby in the NICU. Julia Robert seemed the most obvious candidate, because she had twins 6 weeks early though they were relatively large at 6lb.

I sent an email to the Celebrity Babies blog to see if I had perhaps missed these NICU babies.

According to stats I read on NICU sites, 9% of babies are admitted to the NICU, so then we should hear of at least one celebrity with a baby in the NICU. Or are celebrity babies blessed with better health than we are? I think not. What do you think?

Tuesday, July 26, 2005

Wisdom from Special K

My movement disorder makes me spill things sometimes. Special K asks "What happened". "I jerked" I reply. Now when Special K spills things, she says "I jerked."

When I get upset about something, Special K asks with concern "What's wrong?" If it turns out to be something she understands is upsetting, she says, "It's okay, Mommy. Would you like a hug?". If she doesn't think it's upsetting, she says, "Chill out."

I was speculating with Castor last week about Little T's hospital stay. "Will he come home today?" Special K said soothingly "Well actually, sometimes he comes home. And sometimes he doesn't."

I'm a writer

I'm steadily spending most of my childfree time writing and/or working on getting my writing published. I'm going back to work earlier than expected, and in a different profession. A sea change has come over me. Not sure if after years of writing I've practiced enough that I think my writing's good enough to submit things for publications and therefore call myself a writer. Or I called myself a writer and am now working hard enough to make my writing good enough to submit for publication. Or both. Whatever the case, I'm a writer. It's now my primary profession. Of course I'm still a mother and a wife and a daughter, but those aren't professions.

It's a lot of work. I'm surprised by the things I'm called on to write like my first children's book.

I realised I can't wait for someone to give me a writing job. I have to declare myself a writer and then apply. So I applied for my first job. Since there are fewer writing jobs than managerial jobs, I have to be more persistent to get that first job and to get good jobs, but I'm still a writer even if I'm between jobs. When folks used to ask me what I did I said "I'm a stay-at-home mother, but I used to be a manager." Now I say "I'm a writer."

Thanks to all of you who told me you should write something for publication. Some of you repeatedly over several years. I finally heard you. You're wonderful! I'd say I'm getting off my butt and finally doing it, but in actuality I'm on my butt in my chair and typing.

Monday, July 25, 2005

Lipoma and dieting

I went to a surgeon today for a lump in my arm and he said it was a lipoma, a benign fatty tumour. It's grown in the last 3 months since I first noticed it. It was smaller than a dime and beneath the skin. I only noticed it because Special K was rubbing my arm. Now it's the size of a quarter and bulges out ever so slightly in my arm. It's probably not noticeable to anyone but me.

Jenny told me that "dogs get them a lot...old dogs." I said "Thanks a lot Jenny. I'm officially an old dog." I didn't ask the surgeon if losing weight would help, but I think it's a good motivator to lose weight. It hurts a little more when it's touched now that it's bigger. Plus I don't want it to get big enough to be noticeable to anyone. Little T should have the corner on tumours in the arm in this family!

First thing I'm doing is to stop buying any more desserts and candy. Problem is our nanny gave us chocolate this morning. Then I have to decide if I want to go on a diet and if so, which one? I dieted once several years ago BC (before children). I went on Atkins for 3 months. I lost 15lb, which is about what I want to lose now. Atkins prevented me from eating ice cream and chocolate, which are my downfalls. However I'm not sure if I can survive my current rather stressful life with no chocolate. And I don't do sugarfree stuff.

So I'm considering Weight Watchers, not the meetings, prepared food etc, just the point counting. Jenny just started Weight Watchers point counting and has this spreadsheet. That seems kind of a pain. C says I should exercise more and eat less. That seems sensible. To be honest, I'm not sure if I can even diet. For me to a certain extent, food and sleep are fungible. If I eat more, I can sleep less. I think I read somewhere about a study that proved this point. Anyway I'm still not getting enough sleep. Guess that means I should go to bed now. But before I go, if wouldn't mind sharing what diet and exercise works/ed for you? Goodnight!

NJ & Morrisa's party, BMC list lunch

We had a lovely time at NJ & Morrisa's party on Saturday. I hadn't seen them for too long. So long that they'd never met my husband or either of my two children and I'd never meet their child, Miranda. Miranda talks a lot for her age and we were impressed by her vocabulary. She loved Special K and followed her around and tried to take back her toys. Special K didn't mind. Miranda's very sweet and cute. Here's a photo from their album. They also took some photos of Special K too, which I don't have yet.

I also had fun at the BMC list lunch on Sunday. Special K insisted on coming with me. Then she sat on the other side of this long table with Julia's twins and not even strawberries could entice her away. My little girl is growing up. Time was when she was glued to my hip.

Saturday, July 23, 2005

Why am I up late and blogging instead of writing?

Getting the stitches out yesterday seemed to set Little T back a bit. He has terrible gas and spitup and we feed him at night through a pump, so it's worst then. Last night was difficult because he would spit up and scream at the top of his lungs. Getting stomach acid where you just had stitches out must hurt a lot. But the screaming makes the gas worse, so he'd spit up more. Eventually we'd calm him down. Then we had to clean him up and change his dressing. We were up at 1am 3am and 5am. I hope tonight is better! I stayed up tonight to hear if he'd awaken and start screaming, but then I just realised I'd have to stay up until 1am. I'm too tired to do that. I should be writing, but it's hard to write while keeping one ear out for screaming. Goodnight!

My first picture book

I'm getting some lovely comments on my first children's picture book. It's amazing to me. Yes I worked really hard on it until I think it's compelling and I'm excited about it. I really think it needs to be published, so it can help children. But I'm delighted someone else feels the same way. However she's now on vacation for 3 weeks. And I don't want to submit it without some good comments. So to use an old fashioned journalistic term, it's held in obeyance. We used to play this game Scoop, which was made in England in the 50's and "typeform in obeyance" was one of the states your article could be in.

I'm sad to say that based on my research, books about "special needs" kids are rather marginalized and there's only one major publisher that has published books like mine. Good news is that being the case, I don't need an agent. Though of course it bothers me it's a one-shot deal. Some folks have said "Why not publish it yourself?"

Two reasons:

  1. I’m looking for realistic but warm and humorous illustrations to reassure parents and children and further explain the complex topics and feelings depicted in my book. Illustrations are the essence of any children's book. I don't know any illustrators who have experience with children's books. I don't know that many illustrators period or any professional ones.

  2. I don't have the network or money or experience to get this book into every major hospital in the US or to get into libraries and bookstores. For that I need a publisher. If people don't know about it, they can't read it. And my goal is for it to get read.

I'd love to be wrong, but so far I haven't seen anything that tells me different. Please tell if you know differently.

Friday, July 22, 2005

Another busy day & big girl princess pants

Little T seems to prefer the Mic-key to the NG tube. He used to kick his legs and grunt disapprovingly when we first put on the pump at 150ml/hour. Last night he just grinned away. Unfortunately it also seems to give him more gas, so he spits up a lot more.

We went to CCS OT today and with some help, he stood for a quite a while watching the other kids. His OT suggested making a bracelet of bells using elastic band.

At his surgery apt, the NP removed his stitches which made him cry. I had brought some Ibuprofen, but I forgot to bring a syringe. Fortunately the Mic-key kit the NP brought had one so she gave him Ibuprofen and then we vented his tube. That made him feel better. Then we picked up his Prilosec and bought some Tylenol at the pharmacy. I also dropped off a doctor's form and tried to get some ace wraps, but neither Surgery nor Hemo had any. Go figure.

As I stood outside the car, the ground seemed to move under my feet and I swayed slightly. Either we had an earthquake or I have an equilibrium problem. I felt a little weird driving to the mall, but then I felt okay.

I drove to the mall and walked around pushing Little T in his stroller and did a bunch of shopping. I bought some ace wrap, Pedialyte (for emergencies) and more Tylenol at Riteaid. I stopped by Sears and looked at dishwashers. Then I had a lunch at this noodle shop. Then I bought some elastic bands and bells at JoAnn's. Then I bought a cute onesie. I'd have bought more, but that was the only in his size that had poppers all the way down the front. I also bought Special K some "big girl" princess and Barbie pants. Then I bought groceries at Trader Joe's. Finally Little T and I went home.

Special K squealed over her "big girl" princess pants. She wanted to put them on them and there. I said she had to use the potty, so she immediately did so. Then she proudly put them on. And then she kept saying "I'm wearing big girl pants."

Little T's already such a boy. He loves to whack things preferably to make noise. Last night he started yanking on the mobile really hard with a big grin. Special K used to bat at the mobile, but we never saw her go at things like T does. I never used to believe in girl/boy differences before I had kids.

Thursday, July 21, 2005

Little T's home!!

It was 48 hours, his shortest hospital stay ever and his shortest discharge too, taking about an hour. They're probably related. He tolerated his first feed through a G tube quite well. When we arrived, he was in his stroller parked in the hallway next to the nursing station. A nurse was bending over him and he was smiling away. The doctor joked "He's been kicked out of his room already." and C believed him for a second. Little T normally protests a little at being dressed, but this time he just grinned. Maybe he's figured out now that getting dressed means going home. He fell asleep on the drive home and is still sleeping. It must have been hard to sleep in the hospital. BTW he was staying in room 3333.

Wednesday, July 20, 2005

Delegation and relaxing

I wrote this in response to Mary Anne's journal entry.
My life is filled with lots of things to do and unfortunately many of them are unpleasant and draining. I can't say I'm always sanguine, but I am coping better than I feared.

Here's what helps me:

  1. Delegate, delegate, delegate. As my friend Jenny says, "these are your rainiest days, so spend money if you need to." I ask myself "Would I enjoy my life more if someone else did this job at least part of the time? I ask this one first, because it's harder for me to admit that other people can do the job as well as I can.

    Cleaning and child care are tops of my list here. With both I struggled, because as a stay-at-home mother, I felt like I should be doing both these things all the time. However both can take infinite amounts of time, because they never end. I still have to train someone. And I still do the bulk of both. Someone just helps me.

    Some folks ask "How can you have servants?" Well the fact of life is if you live in the first world, you have servants, but most of them are invisible to you. There are people paid far less than most people on the Internet w/jobs who make our electronics, clothes and toys, pick crops, wash dishes, etc. Almost all are paid far less than I pay my nanny/cleaner and have worse working conditions. I almost never have the opportunity to say thank you or try to help them in any tangible way. I'm sure my nanny would rather have a nice office job, but due to reasons I won't get into here, this is actually one of the best jobs she has open to her. Not that I pat myself on the back for being better than any other mother. I think most mothers are at least sometimes grateful; Nanny Diaries, not withstanding. What I mean is most working class jobs suck. At least I pay her what I say I will. If she's sick, I try to give her extra hours to make up for it. I'm courteous most of the time and at least never outright rude. And my kids are cute.

    Some folks say "I don't have the money for that luxury." Some of you genuinely don't. But some of you have Internet access for recreational purposes, eat out, buy clothes, electronics, computers, new cars, and/or other luxuries. These things involve money and servants just as much as hiring a nanny or cleaner does. Personally I'd rather have a cleaner every other week than eat out with the family. But my point is that most of you do have discretionary income and make your own choices on how to spend it.

  2. Time relaxing is not wasted time. Your body and mind need time to rest. If you don't rest, you actually end up doing less, because your battery winds down. You need to recharge your mind and spirit. What recharges you is different for everyone. I used to think it was sitting around meditating or being still. Maybe I'm not evolved enough to do this, but I find it makes me more restless. Letting my mind wander too much right now is a bad thing. I start worrying a lot. But reading a book, talking to C, watching tv and reading and writing certain kinds of email, and taking leisurely walks with Special K and Little T all recharge me.

And now I have to go back to the hospital, but I'm glad I got a chance to recharge a little.

Tuesday, July 19, 2005

Little T's Broviac removal and Mic-key surgery

Poor C had to take Little T to the hospital at 6am for T's 7:30am surgery. Thanks to our nanny, I was able to have breakfast with K, then drive over to the hospital just in time to see T before he was sent off to surgergy. Our nanny dropped off K at preschool. The operation went well. The surgeon said there was no bleeding either removing the Broviac or putting in the Mic-key gastronomy tube. T took a long time to wake up, but when he finally did, he started crying loudly. This actually reassured me, because with the bad anesthesia experiences he's had, he just whimpers or worse just stares up at me, scared. It took some time to calm him down. Clearly he was hungry, because when I held him, he still cried, but Daddy was okay. Even though I'm no longer a source of food, he still expects me to feed him.

It took a while for us to get a room and it's very noisy next to the nurses' station and another crying baby, but hopefully we'll only be there 48 hours. T is quite fussy, because his stomach hurts from the stitches and because he's not allowed to have anything in it for 24 hours. Also the Broviac site hurts too. Unfortunately it all hurts badly enough that he needs morphine to deal with the pain. He's already tried pulling out the stitches, but fortunately they appear to be firmly sutured in. And it's good he's well enough to protest.

I have more to say about the day, including the fact that C gave blood for the first time in over a decade, but I'm really quite exhausted. Both C and I had trouble sleeping last night. And C had to set the alarm at 5am in order to get up. I didn't really get back to sleep after that. I would have gone with him, but I didn't want to wake Special K up at 5am.

Monday, July 18, 2005

First paying submission ever

Today I submitted my first writing to a paying publication. I sent "His Tube Ate My Boob and Other Feeding Fables" to Brain, Child Magazine via email with a return receipt, but I guess their editorial assistant hasn't looked at my email yet, because I haven't received a receipt yet.

The timing is somewhat deliberate. I've waited a while to get critiques and I figure tomorrow and the next several days after I'll be worrying too much about Little T to think much about my essay. Also waiting for T to get better will remind me of the value of patience. At least that's the theory. We'll see how it goes.

More importantly writing the essay helped me confront some of my feelings and history with formula that I'd sorta been hiding from, because I like to think I'm not bound by prejudice and silly beliefs, but in the end we all are. I'm not sure if I'd have been as willing to sign on with the G tube right now if I hadn't written the essay.

I think the G tube may be another chapter in the story. The whole thing seems simple enough, but I have a feeling it won't be. I don't know if it's continuously being burned w/Little T, or mother intution. I just have this feeling of "clear the calendar for the next week, because we're going on another rocky ride." Maybe he'll just be sore and grumpy. He loves to roll on his tummy now and he won't be allowed to for a week. Still rather hellish, because he screams loudly, but by no means life-threatening. We'll see. Please wish us luck.

Little T's ped apt

Little T had his "9 month apt" with his pediatrician today. Although as you may know, he's now 10 months old. He's gained a little bit of weight since Wednesday, or it might be the difference in scales. According to the ped scale, he now weighs 16lb 8 oz (7.484 kg) though he hasn't grown, because he's 26" long and his head is 18" which are about the same as last week. His ped was amazed at how much he'd grown and how much better he looks. She said "You probably can't see it since you see him everyday, but I sure do." It's good to be reminded how far he's come. I'm still worried about how much recovering from tomorrow's surgeries will set him back. But the apt also reassured me what a resilient boy he is.

Alumni weekend Part 2: San Francisco & K cuts her lip

The next day C dropped me off near SBC Park in SF. Well he was supposed to drop just me off, but Special K insisted on coming along on the tour. First stop was the Mission Bay visitor center where a representative of the developer waxed on about all the great development plans they have. K wanted to rush around the large building so I followed her around half listening to the lecture. Then we were driven over to the new UCSF building of Sciences with a magnificent set of arches similar to the ones at Green Gables except of course they were made of modern granite and instead of climbing down stairs to see the view, you climbed up stairs and saw a magnificent view of SF.

We were shown around Mission Bay for a little more then were dropped off at the terraced entrance of Yerba Buena Gardens. As our tour guide advertised, it's the best entrance. We walked up the terraces then up the steps over the top of the MLK fountain and saw another good view of the city. Then we walked to the top of Yerba Buena gardens and back down around to SF MOMA.

K rushed around and chased pigeons. Unfortunately she tripped and fell abrading her lip. Pools of blood gushed out of her mouth and she started screaming. Fortunately I could see that the cut wasn't serious. Lip cuts always bleed terribly. I picked her up and got blood on my cheek, neck and shirt and K got blood on her dress and hands, but after a few minutes she stopped crying. Putting a wet tissue on her lip seemed to help. I wasn't sure if it was the coolness of the tissue that soothed or just having something to do. Her lip swelled up nice and fat. Fortunately a pediatrician was among the party and she suggested ice. Kind alums helped carry my bag and find ice. K made some effort to put ice on her lip, but it was clear she found the request slightly baffling. After another hour her lip looked a lot better.

We met C and Little T at Market Bar where a lunch was served to all the alums. I liked the stuffed eggs topped with crab, and roast chicken. My parents and Saskia also arrived and had lunch at a separate table. Little T loved being dangled on S's knee and laughed and smiled.

Then Kate '75 kindly gave me ride to a tea. K wanted to go too, but she seemed tired and there was the issue of the car seat. The tea was hosted by Emily Murase '87, and Caroline Marks '53 who said her husband had been 30 years in the state senate. She's a grand old lady. She has photos signed by various dignitaries including Bill Clinton. She has a lovely tea set that reminded me of my grandmother. I had a great time talking to alums from '48 down to '04. Then Kate gave me a ride to the Presidio and met up with my parents, my husband and my kids. We walked around a bit. It's a lovely campus with little artificial streams and a huge fountain. Then finally it was time to go home. We took part of the scenic 49 mile drive, so we didn't get home until after 8pm.

Alumni weekend Part 1: Filoli, Green Gables Estate & Stanford

We spent a lovely weekend with alumni from Bryn Mawr College Here's the itinery. On Saturday we drove up to Filoli. The last time we visited Filoli was for a bird watching tour, which was early in the morning. Afterwards we had a picnic lunch in the cafe outside. We didn't see much of the house, and it was a self-guided tour.

This time we had a guided tour of the house. We scrambled to catch up with the later Bryn Mawr tour and missed the introduction. The tour guide gave us lots of details about the house and furniture. Some interesting like the person who donated the furniture was more Eastern oriented than the original owners, but he happened to have the owner's favourite knitting chair. Others like where such and such film was shot, not so interesting to me. About halfway through the tour when we met up with the earlier group, one of the alums said "We really want to see the gardens. This is just a house, but the gardens are lovely." So the tour guide started rushing through the house.

We lagged behind and stayed with the other tour group that was lingering in the kitchen. To me kitchens in great houses are always interesting. The hub of a house is always the kitchen. And in old-fashioned children's books, the children always sneak down to the kitchen, where they have a wonderful time. The tour guide showed us the bell system which was state of the art at the time with circuits instead of a system of levers. He also showed us the enormous drawers in a large table. You could pull out the drawer from either side of the table. I thought that was neat.

We finally went outside to the gardens and the gardens were nice, but to me they were just gardens. The owners had tried to imitate French and Italian gardens of the time, but really it reminded me most of English gardens in smaller great houses. I'd seen a lot of them. But there aren't that many old mansions left in California. We had trouble walking along the gravel paths with the double stroller. Sometimes the path was too narrow, but more often there were steps. It was also incredibly hot and Special K got a bit grumpy and insisted on riding in the stroller and eating Cheerios.

Then we drove to the real treat of the day: Green Gables Estate. Green Gables is a private estate designed by Greene and Greene. Delia '52, a Bryn Mawr alumnae grew up there as a child and it's her summer home. She stays the winter in SF. We ate lunch on the veranda outside the house and had a lovely view of the terrace. At the bottom of the terrace was a view of the Roman Garden. I'll have to put up my photos sometime, but here's one for now

I had an interesting chat with Amy Campbell, the Director of Athletics about the Wellness classes they have. They had a class in my day, but I don't remember it, so I guess it wasn't that useful. The health seminar I went to in 2001 was much more useful. And from talking to her, it sounds like they have improved the class a lot to teach women how to take care of themselves.

D also kindly opened up the entire house to us, so we rambled through the house. K loved it so much or perhaps enjoyed its coolness that she kept asking to go back inside and wandered through the numerous bedrooms. Her favourite room was one of the few rooms covered with wallpaper: a green flowery pattern which was continued to the ceiling. An extremely feminine room. D said that was her room as a child. My favourite was the room entirely designed and furnished by Green & Greene. It had cool tiles and a brown ceiling with brown floral motifs. It was also the coolest room in the house, though the house was a lot cooler than the sweltering outdoors.

The roof had just been recovered with individually hand-pressed cedar shingles. They gleamed blond in the sun. D said they'd darken with age. I enjoyed looking at the cedar store room with cedar closets with glass windows. They were carefully labeled and filled with pink towels and white sheets.

I noticed that the electronics were all pretty ancient. I think I have a bigger tv and we bought ours in the early 90's and they only had VCRs. No DVDs in site. Though there was a laptop computer.

The kids fell asleep on the way to Stanford, so C dropped me off. I walked on a short tour around the campus to view the various sculptures, most of which I'd never seen. My favourite was Timetable by Maya Lin. I'm a sucker for anything with water, especially water you can easily touch. I also liked that you could tell the month as well as the time.

Of course we saw the Burghers of Calais by Rodin, and Gay Liberation by George Segal. I've seen that many times before, and I enjoyed seeing them again.

The Stanford Legacy by Don Yeomans was a Haida totem pole that told the story of Stanford. The top was a little boy who represented Leland Jr who died at age 15. He peeked his head out from the crest of the crow of knowledge who joined tongues with the mystical frog. Below them was a crying woman who cried copper tears, Jane Stanford. Then below that was Stanford himself holding a copper of wealth while a student reached up to take the copper.

After the tour I got a ride home with Anna Cusack '04 (no relation to John or Joan who I think said she's going to join the list) and collapsed on the sofa with a headache. It was very hot outside and I find looking at art, examining it closely and thinking about it really tires me out.

Friday, July 15, 2005

Little T's tube ripping & K helps herself

Little T now rips out his NG tube twice a day -- once in the morning and once in the evening. It reminds us we have something to look forward to if his G-tube surgery goes well.

K has taken to helping herself to food from the fridge and taking paper towels and wiping any messes she makes, not necessarily actually cleaning them, but at least trying to. She also wipes T's face. He doesn't mind, though he cries when C or I do it. I'm torn between marvelling at her newfound independence and frustration because she leaves bits of cheese, and crumbs all over the floor. I also worry slightly if Special K will remember her childhood as one where she had to scavenge for food, because her parents were too busy looking after Little T. Never mind that C and I still provide 3 meals a day for her and of course I shop for everything.

Thursday, July 14, 2005

Yesterday's exhausting afternoon

Yesterday afternoon was so exhausting, I didn't even want to recap it until now. Little T, Special K and I all went to Little T's CCS OT apt. T's sitting up better and shrugged his left shoulder for the first time in front of the OT. The OT was reassuring about T bouncing back after his G tube operation.

Then we drove to the hospital and parked there. Then we walked to a little sushi box place and ate some sushi. My hand twitched and I spilled my Snapple all over the table. K said "Don't do that, Mommy." I said "I can't help it. I jerked."

Then we walked to Andronicos and bought some grapes at K's request, some teething biscuits and some Tetley tea. K and I ate grapes outside while T sucked on his teething biscuit. He really enjoyed it and made a huge mess. It reassured me that whatever's wrong with his throat or vocal cords, he does enjoy some eating things like a normal baby. Then we walked back to Pediatric Surgery and waited about 20 minutes until our appointment. That wasn't too bad, because they had two kids' movies playing and K made friends with someone and sat with her and watched a movie.

T was weighed at 7.45kg and 66.5 cm long. Yay he's still growing! Then we were shown a exam room and we sat there for literally over an hour. K was overdue for her nap. She was actually really good, considering how tired she was. But T got really bored and tired. He kept fussing. I tried to entertain T with games of peekabo and shake the baby toys. After a while that got old even for T. I also tried to keep K awake, because I knew she'd only have to wake up once the exam was over. If I'd known it was going to be an hour wait, I wouldn't have bothered. Finally she fell asleep with her head and tummy on the chair and her legs on the floor. She was that tired. When the NP finally came in, both kids were asleep.

The Nurse Practioner made no apology that we waited so long nor did she seem to notice Special K. She examined Little T briefly as he slumbered on. She said not asked really "Do you mind if I look at his [left] arm?" I said grumpily "Yes, I do. He's just fallen asleep." She left the room. Then 15 minutes later, the surgeon on duty came by and did notice Special K and gave her a pat on the back. She slept on. He said "Wow, she must be really tired." I said "Yes, we've been waiting here a long time." He apologised. Then a nurse showed me the MIC-GT which will be placed in T's stomach.
This image shows two of them. As you can see, it's small. The surgeon puts an endoscope in his belly button then uses that to place the GT in his stomach. The plug is outside his stomach. The tube goes through the hole in his stomach and the balloon holds it in place. The entire thing comes out once every 3 months when it's changed.

Then we walked over to Hemo and got his (hopefully) last labs drawn through his Broviac. C wanted me to have T's doctor look at his arm. It feels harder now. I think it's probably muscle. C doesn't know. Anyway for the first time ever, she refused to come see him. It made me sad that she said no, but also happy that he's well enough that she can say no.

Then I had to drive through rush hour traffic home.

Wednesday, July 13, 2005

Snapple Favor?

I've not bought a Snapple in months, but today I bought one and on the lid, received a "favor" -- a free Snapple lip balm. I'm torn between curiousity to see just what Snapple lip balm might smell like and the hassle of sending the lid in. What do you think I should do?

Harry Potter Quiz produces error

Here's my result from the Harry Potter Personality Quiz

Pirate Monkey's Harry Potter Personality Quiz

except that the headline at the top says ENFJ and the text below says ESFJ. Hrm. Which Harry Potter character are you? And did you find more bugs?

It's a small world and reschedule of T's surgery

In another version of "It's a small world", my friend John Abbe sent me a mass email with a link to his blog where he mentions he's considering living in the N Street Cohousing where my high school friend Barbara West lives. I just called her last week after years of being out of touch. It was great to talk to her. John also wrote that Guns, Germs and Steel is now a 3-part PBS special. I missed the first episode, but have Tivoed the other two. I'm sure it'll be back again.

The nurse rescheduled T's surgery to Tuesday. Good news: Cancels interference with alumni weekend. Bad news: more time to worry about it.

Tuesday, July 12, 2005

T's surgery is on Thursday, I got carded & management

I'm exhausted, did still more stuff today, some of it a repeat of yesterday aka more calls about T's upcoming surgery, tests, referrals, etc. But I'll spare you another list.

Forgot to mention that T's Broviac removal and G-tube surgery is scheduled for Thursday. C and I both feel quite anxious about it.

I went to Trader Joe's and I got carded for the first time in ages. :) It must be my new shorter flippy 'do.

I spent a nice afternoon with my friend Dave. It was good to be reminded that I could go back to management if writing doesn't work out. And some aspects of management and parenting are similar. I did enjoy managing engineers. It's just really difficult if impossible to find part-time management positions. I even have a book in me about managing engineers, but I quit working shortly after I had the idea, and no-one will want to buy a management book from a stay-at-home mother. Sigh. I wish we were better respected.

Monday, July 11, 2005

Another cranky day but it was productive

I had another cranky day today. Little T cried a lot, not sure if he was cranky too due to his cold or the heat, or just tired of having a cranky mother.

Here's what I got done today:

  1. Took K to gymnastics
  2. Got my hair cut
  3. Revised cover letter and manuscript for my children's book
  4. Coordinated surgery for T - He's getting his Broviac removed and a G tube inserted
  5. Coordinated blood work for T that needs to happen before his Broviac is removed
  6. Called PT twice to try to get first apt
  7. Called T's ped twice to try to get approval for his Infant Dev apt
  8. Ordered a sun hat for Little T that needs to be picked up at REI
  9. Rescheduled Respite care for T due to surgery
  10. Did several loads of laundry
  11. Attended T's OT apt
  12. Called cleaners of 2 years to cancel service

I try not to have too many lists of what I did in my blog, but I think it does illustrate why I'm cranky. I am also cranky because T will have to stay at the hospital for 1-2 days after his surgery. And if he stays more than a day, it will interfere with my long-laid plans to go to an alum weekend tour of Filoli and SF. At least this time we have some warning he's going to the hospital.

Does blogging affect good writing?

C found this interesting article "Writers make good bloggers, but does blogging affect good writing?" by Tom Dolby. I do agree with Dolby that the immediacy of publishing online is gratifying. I'm still waiting on some comments from my sister before I send off "His Tube Ate My Boob". I've only published in college newspapers and magazines, so I don't think I count as published yet.

However I'm fully aware that my blog doesn't contain my best writing. Is that fair you might think reading this blog? Well, yes, because you see, you have the immediacy of reading something I write almost everyday, and you don't have to pay anything to read this beyond Internet access. "Long form writing" as Dolby puts it, well it takes a long time. You write one draft, then you revise it, then you give it to some people to critique and if they're good, they say "Well, Thida, this bit is muddled and this bit needs expansion." and ask other questions and state other things that show that it's not quite the beautiful baby you hoped it was. And sometimes they disagree, and you revise it again and again, but in the end you find the heart center of your piece and it's much better for it. And that's even before you submit it for publication.

After writing the bit above, I realised I'd created this myth in my mind that I'd never published before, forgetting about an article in a college magazine, the college newspaper, where I eventually became editor in chief, and how I'd interviewed for a reporter job in Philly. Writing for a weekly or daily newspaper is a different beast than writing for a literary magazine or a novel. Closer to the truth is that until recently I was to scared to subject my writing to close peer review and therefore make it good enough for someone to actually pay for my writing. I do know enough to realise that's required. Obviously there was editing for the college newspapers and magazine, but not to the extent one would hope for in a professional setting. Perhaps I'm naive about this. We'll see.

So my point is that yes perhaps I'm "spilling some blood", some good ideas that might germinate into a fully grown novel or story. But I can also ramble on with no editor to tell me to cut that bit, revise this bit. I like that. I also don't find it the sapping of fertility that Dolby seems to find it, because I believe that part of the "alchemy of writing" is that painful critiquing and revising process.

Perhaps most importantly, blogging keeps me believing me my writing is a stream and not a well. It's the belief that I won't have enough that paralyses me. As my friend Jenny said "You have many interesting things to say. You don't have put them all here [in "His Tube Ate My Boob"]. You can cut this bit out and expand on it in another essay."

Saturday, July 09, 2005

New hardcover book

My friend Mary Anne's new book Bodies In Motion arrived today from Amazon. I'd forgotten the lovely unmarred surface of a new hardcover book, the uneven surface of the edges of the closed book, the soft sound when you open it for the first time, and the feel of cotton in the crisp pages. Buying books is something I gave up almost entirely when I stopped working. We have a good library within walking distance, and a large library of books in our home. Not buying books saves money and space, which my family could always use more of. I miss it, but not enough to cut back on other treats like eating out.

Friday, July 08, 2005

Grumpy Day

Today both K and I woke up on the wrong side of the bed, as the English would say. Little T woke us all up at 4am by screaming. He ripped out his NG tube and C had to put it back in and change the sheets. The night before I changed the sheets. But this morning my head started pounding, I felt nauseated. I knew if I helped, I'd wind up with a migraine. Instead I was next awakened at 8am by K wailing downstairs. I felt grumpy. After 15 minutes I walked downstairs. "Why are you crying like a baby?" Hardly a good beginning, but better than if I hadn't taken the 15 minutes. K wailed on. I asked "Why don't you talk to me? I can't understand what you want if you just cry." K whined "I don't want to eat." "Okay, then don't eat." I said. She stopped crying and got off her chair. Clearly I had missed some epic battle in her mind.

Soccer was our next test. "I don't want to go to soccer." she whined. I said "Well you said you wanted to go to soccer and we're going to finish the class." After I said it, I wasn't sure if I was talking or my parents.

My parents would say it's a waste of money not to go. My MBA training tells me that the soccer fee is a sunk cost. I've already paid the money and it's too late for a refund. Therefore my going or not should be irrelevant to how much I paid. The continuing cost now is time. Should we go and try to eke out some enjoyment? Maybe she'll find she likes it. Should I maintain the principle that if you start something you should finish it? Is a sign of weakness or bad parenting if I let her quit soccer because she doesn't like it? These questions spin around in my head and make me more grumpy.

After soccer, K wanted to play in the park. But there are trees full of pollen nearby that triggered my allergies and made my head hurt once again. We negotiated going to the park for a little bit then going home. It was a little tough, but we both got to the car without a meltdown. As I buckled her in, I said "I love you."
"I hate you. I don't love you." was her reply.
"It's okay to be mad. It's okay to say you're mad. But those words are hurtful."
"I'm mad at you and I don't like you." she said pushing me away.
On the ride home I talked to her more about anger and love and not liking someone and being grumpy. I probably didn't explain very well, but these concepts are hard for many adults.

I decided not to take her to swimming. Last week when she was in a good mood, it was difficult in the beginning, because she's very afraid of the water. I just wasn't up for more drama today.

Stupid car gadgets

I saw an infomercial for Hey Horn, a horn that sounds like a clown horn. The entire web site amused me.

Playlist Shuffle Meme

A Playlist Shuffle Meme caught from owlmoose. See if you can guess the song title from the lyrics!

  1. Put your playlist on shuffle. ( I don't have playlists across albums, so I just did a shuffle of all my albums in a particular directory. You get extra points if you can guess why I have this directory.)
  2. Post the first lines to the first 25 (I only did 15) songs to come up (along with these instructions).
  3. Have people guess the songs and artists in comments to the post.
  4. Post the answers to the ones people guessed correctly. A couple of days later, post the first two lines of the ones no one got and get people to guess again.
  5. Repeat, adding the next line to the unguessed songs each time, until they're all guessed/you've posted the whole song/you've gotten bored/no-one's going to get the damn thing if you don't tell them.

Notes: no duplicate artists. A few are obvious, others may be hard.

  1. My little girl,drive anywhere - "Behind the Wheel" - Depeche Mode (luvmoose)
  2. The snake, it moves so quietly through the long long grass.
    Wave as it goes past
  3. For millions of years, for millions of homes.
    A man loved a woman,A child it was born
  4. When the outside temperature rises
    And the meaning is oh so clear
  5. With one wish we wake the will within wisdom
  6. I know when to go out.
    And when to stay in. [spoken]
  7. If blood will flow when flesh and steel are one - "Fragile" - Sting (owlmoose)
  8. Tonight I’m tangled in my blanket of clouds
    Dreaming aloud
  9. Very superstitious,writing's on the wall
    Very superstitious, ladders bout' to fall
  10. I came here to let you know
    [song title]
  11. What I dream I had, dressed in organdy. - "For Emily, Wherever I May Find Her" - Simon and Garfunkel (owlmoose)
  12. I'm packed and I'm holding
    I'm smiling, she's living
  13. I love the time and in between
    The calm inside me
  14. Oh, why you look so sad?
    Tears are in your eyes
  15. Love is but a song we sing
    And fear’s the way we die

Thursday, July 07, 2005

2nd CCS OT apt & T rolls from back to front

Torin had his second CCS OT apt. In a week, he can sit up more steadily and for longer. He has better balance. The OT feels he will catch up in no time. I'm more cautiously optimistic. We've already learned that his road has many twists and turns.

The OT said I had lovely feet. No-one's ever told me that before. It must be the pedicure. I got another one last week with Jenny.

I put Torin on his back while I was on the phone. I came over to look at him because he was crying. He had rolled from his back to his front! I rolled him onto his back and he grinned up at me. He's definitely making progress.

I found out my dad was sleeping, because he had the day off and was recovering from jet lag. It figures.

London today

What a shock to go from celebration to mourning. As befits the blogging age, I first found out about the London bombs by reading owlmoose's blog. I called my parents who are thankfully back home from London and woke my father. He hadn't even heard there were any bombs, so I must assume that my cousins are okay. Now I wonder why my dad was sleeping at 9:30am, but that's another blog.

Wednesday, July 06, 2005

London 2012

London beat out New York and several other cities to win the 2012 Olympics. The BBC explained why London won. Typically, the BBC News broke the news in the context of the G8 conference. My grandad would be proud and happy. We may even go and watch, but it's hard to think of what my life will be like in 2012.

Help! Please will someone fix my template?

I sent email to the author of the template as I said in my previous post, but I've received no reply. Please can you fix my template? As you can imagine from reading my journal, I have little time, and css is new to me. I've tried three times in little snatches, but I haven't gotten anywhere. Probably someone's reading this who does know css and it would be relatively easy for them to fix the problem. The code for my template is here. Thanks so much!

Tuesday, July 05, 2005

Little T's latest hemo apt: His big head & G-tube

Little T's left arm continues to shrink and his hemangioma is now 6.5cm x 5cm. When he was born it was 24cm wide, not sure how long. He gained 200g to 7210g, gained .3 cm in length to 62.5 and his head shrank .5 cm to 45.5cm. Well not really. The .5 cm was probably measurement error. Even so, he's just above the 50th percentile for his head circumference. Everything else is still below the charts i.e. below the 3rd percentile, so yes, my boy has a big head.

We talked about removing his Broviac and putting in a G-Tube at the same. Both procedures are supposed to be low-risk and the highest risk is the anesthesia. He's had various adverse reactions to anesthesia including high blood pressure, rapid breathing and it seems to make his throat sore. Once he almost had to spend the night in the recovery room.

It's a little earlier for the G-tube than we'd like. We were hoping to give him a chance to eat more on his own and perhaps get rid of any feeding tubes. But he hasn't had any chemo since June 8th, so he's running out of medical reasons not to eat except for his NG tube. It's still a tough decision. We'll see if they can schedule both at the same time. If they can't, I'll take it as a reason not to put in the G-tube.

As I drove there, I remembered the words of the counselor I had years ago when I first discovered I was molested at age 7 by a next-door neighbor. She said that I was hard on myself; that I should talk to myself like a friend. If a friend came to me and described the situation I was in, I wouldn't tell her it was in the past, so she should just get over it. So I've been talking to myself as a friend. It helps.

When Little T had sepsis, the right thing didn't happen at first. But we kept taking him back, kept asking for help and eventually Little T got what he needed. "We've been through the worst of it" is not steady ground. I don't know what might lie ahead. What I do know is that I have gotten through somehow and I am a survivor. This Indigo girls song keeps running through my head: "The less I seek my source for some definitive, the closer I am to fine."

My friend's new book is out today: Bodies in Motion

My friend Mary Anne Mohanraj sent out this mass email today.

Just a quick note that my book, _Bodies in Motion_, launches today,
after five years of work (or ten, depending on how you count), and I
am giddy with excitement and anticipation. I will spare you the long
description and note only that it is Sri Lankan-American immigrant
fiction, that one of the twenty stories has a tiny fantastic element,
and that you can read much more about it here (including book tour info):

If you were thinking about buying a copy, it is hugely helpful to
me if you buy it in the first week it's out, since publishers look
at first week sales figures to determine further printings (or so I have
been told). I will be equally delighted if you read it at your local
library, though. Thanks!

- Mary Anne

And yes I preordered the book. I'm really excited for her, because she's worked really hard for it. She's not the first of my friends to publish a book. Despite years of being pretty shy about my writing, I've managed to accrete a few writer friends. Perhaps it's pheromones. I meet someone, talk with them for a while, because I think they're interesting, then find out they're a writer. But this is the first time I've known someone before they published their "first book" as many reviewers are calling it. She's published several other books, but this is her first book in literary fiction. It's pretty darn cool.

Monday, July 04, 2005

Disney Princess TV, Smart Glove and George Orwell

Yesterday I bought a Smart Glove at Fry's. It should help with my RSI. They sell them singly, not in pairs. Fry's only had one, so we went to Best Buy. There Kerensa exclaimed "You have to see this!" It was a Disney Princess TV.

We had a fun time at Sonya and Robert's party. Robert made cherries go up in flames. Torin was at his most charming and sat by himself on the floor for a bit. Then he sat in various people's laps and chewed on Jed's knee. Today Torin cried a lot so I guess we stayed too late. Jed brought along a new Treo, Ipod and the same camera we have. The first two gathered a small knot of geeks around him, including me. The Treo glows with lightup keys and chrome plating.

Today we walked downtown and ate dimsum. We browsed bookstores on the way home. And I saw Finding George Orwell in Burma
a nonfiction book in which the author used a pseudonym, because "she wanted to be allowed back into the country. It made me worry if I should use a pseudonym also for my novel The Road to Mandalay. Otherwise I might not be allowed back into Burma, or worse my mother won't be able to go there. Oh, well I'll cross that bridge when I come to it. Hopefully it won't be a bridge on the River Kwai.

Saturday, July 02, 2005

The gift of writing

I'm feeling a bit better today. I feel blessed to have the gift of writing. If writing about my difficult journey, my personal truths helps others, it provides some meaning. We can't choose our gifts or our genetics our bodies or our children. It's part of a complete package.

I'm still scared of having my work published, of being exposed, but everything that's happened to me, to Little T shows me that I can handle it. A rejection slip, someone telling me my writing sucks, or worse, that my writing horribly wounded them can't possibly be worse than last week.

So I put together a mockup of my children's book with some photos borrowed from Google images. The publisher will provide photos or illustrations, but the mockup is for folks who are used to reading a children's picture book with pictures.

If you'd like to see the mockup, please send me an email.

Science RSS Feeds

C and I just installed a new version of gallery which has RSS feeds. And I just downloaded Inforss an RSS extension to Firefox. It scrolls headlines from your RSS feeds across the bottom of your Firefox.

One of the defaults is a feed to The Register and through it I read "Are Brains Analog or Digital?" It's a poorly written article that starts with a specious claim "we think in analog, not digital. It's a bold claim which if true, threatens to make thirty years of linguistics and neuroscience metaphors look very silly indeed." I really don't know a serious scientist who truly thinks "digital" is anything, but a flawed analogy to try to explain the brain to nonscientists.

Then frustratingly the article presents part of the story that makes it seem like the digital analogy actually explains the whole story. "We know that with brain neurons, at least 90 per cent of the bandwidth they use is digital. There is a fibre or there is not a fibre, there is a pulse or there is not a pulse." Well that's true. However it neglects to mention a key point: unlike a computer, each neuron accumulates chemicals or "weights" and fires a pulse if these get above a certain weight. Therefore the brain is both analog and digital. Well not really either. My dad says he hates scientific analogies, because they don't properly explain anything. In this case, I have to agree.

C already told me The Register is "unqualified journalism" and now I've unsubscribed from The Register Feed.

My main source of science articles is The Economist. The Economist provides 2-4 a week. I also read National Geographic, but the articles are in small font, so I read it less often on the computer. I'd like to add another science RSS feed. Technical or abstracts are fine, hard to read isn't. If you have any recommendations, please add comments here.

Friday, July 01, 2005

My Sister's Keeper, sadness and depression

I'm somewhat depressed. Or is that sad? I am grieving. The closest analogy for me is when I'd break up with someone. My heart literally aches in the same way. My jaw tightens. My throat hurts. I feel the weight of sadness on my chest. Part of me is so glad that chapter is over. I have no regrets. But I'm processing what happens. I need to process, to feel sad, but it drains me.

I don't really want to do anything. Special K's angry at me, because I started withdrawing. I started reading My Sister's Keeper, a very depressing book about a girl whose parents created her so they could harvest her blood, organs, etc for her sister who has leukemia. I realised I had fallen into old habits of reading a book instead of dealing with my own feelings. I remember clearly in grade school after a classmate said something to me that made me want to cry that I biked to the library and read Moreta. I could feel sad, but it wasn't about me. And it didn't show on my face as much. Sadness was wimpiness. Sad people were too vulnerable. It wasn't until age 21 when I first broke up with someone that I learned to cry.

Special K loves a good cry. She cries everyday. In fact she just woke up crying. She said "Hurts" probably her neck had a crick in it. I'm not ready for a good cry yet. But I'll try to take a leaf from her book and feel more sadness.

Little T's first apt at CCS MTU

I'm amazed at how much progress Little T has made with his legs. He kicks a lot and can now bear weight on both legs. He made some good progress towards rolling from front to back with his left arm on top, so he has to use his legs and torso. Right now he roll with his right arm on top, so he can use his left arm as a weight to pull him forward. C says he's close to rolling from back to front by twisting his legs. The CCS MTU OT did a thorough job and gave me some useful exercises to do with him.

We talked a little about my need for OT especially with driving. I realised I'd forgotten all about it.