The Kims could have been my family

Last night I saw the news that James Kim died of hypothermia.  With a sudden shock, I realised "I know that guy!"  I wracked my brain.  Then like a true geek, I used google.

James Kim was a senior CNET editor.  He appeared on my Tivo every week explaining the latest digital audio gadgets.  His eyes lit up and he smiled when he showed something he thought was particularly marvelous.   I will miss him.  I watched him both because I really want an IPod and because he was cute.

I had heard there was a family that was lost in the Pacific Northwest.  I didn't really pay much attention.  I broke my toe ten days ago and I've been craving more mindless entertainment.  I didn't expect to actually recognise the guy.

I know that James Kim left the car to help his family.  I could see that James Kim was clearly an intelligent man.  He and his family were very resourceful in their efforts to survive for a week with no food and no emergency supplies.

It made me realise that the only thing currently in my car is a basic first aid kit, a small water bottle and some jumper cables.  Before we drive in snow, I'll buy some space blankets (very small and cheap), some flares and a few emergency food rations (again they're small).  I already have my earthquake survival kit at home that fits in a backpack.

It's hard to write a post like this without sounding like I'm blaming or criticizing James Kim.  I'm not. In fact when I was about nine, my own family narrowly escaped Kim's fate of dying by hypothermia.  They hiked down Grand Canyon without correctly estimating how long it was until sunset. My mom tripped on a rock and hurt her leg, which further slowed them down. They wound up hiking on very narrow trails with no flashlight. They too got lost. They also got very cold.  Luck saved them.  Their wrong trail eventually led to a road.

I think that lesson didn't quite sink in because it had a happy ending.  I will learn from James Kim and be more prepared, because you never know when you may get stuck in a very bad situation.

Kind blog but not any kinder

After some thought, I decided to join Karen of Chookooloonks in designating this a I hope you find what I say occasionally insightful. I don't promise to be uplifting since my life is sometimes sad, and I also think that's a adjective others give to you rather than one you can give yourself, but the sign didn't say uplifting. It said "kind." I suppose I feel kind is also an adjective that others give to you as well.

On first impression, I don't think I come across as kind, so I'm not sure this blog comes aross as kind. I'm often preoccupied. I hvae a sharp wit. I'm slow to warm to people. But yes, I suppose I am kind. I help people. I used to do more when I could do more. I'm the sort of friend that people drop in or call when they're having a really bad day, even now. I sometimes say nice things, which are true, and always seems to startle people. But I'm the Elizabeth Bennett type. You'll have to read a fairly long way into the story to find my acts of kindness.

I've always been very careful in this public blog about what I say about other people, both those I know and don't know. Too many people have said cruel things to me either intentionally or unintentionally on my journey as a disabled person, especially, and sometimes as a woman of color for me to want to be cruel to others. Anyway, I find it's not very productive for me personally. It's more of a selfish thing. I'd rather devote my energy to people who are actually nice to me.

But still I'm English and I'm not entirely comfortable with the label 'kind'. So mushy. A part of me says stubbornly, "I absolutely refuse to blog any differently." But I don't think I have to. And the flower is very pretty.

Laughing in the hospital

Little T literally laughed in the ER. You'd never know from this picture that he was here in the hospital recovering from a life-threatening bacterial infection back in July 2005. He turned blue in my arms at home twice. He coded twice at the hospital. Teams of doctors rushed in and saved him.

But a few hours later my sister held him and he laughed again.

I no longer worry each day whether he'll still be here in a concrete sense. And I've been bogged down a lot by the constant grind of day to day care of a special needs kid. I've also been feeling depressed lately due to the medication I've been trying from my movement disorder. But this photo really lifted my spirits. It reminded me how far we've come and how he still laughs with that same wide open grin. I hope it lifts your spirits too.

She's Such a Geek now available in bookstores

She's Such a Geek is now available in stores. I just saw two copies in my local book store. It's also available on Amazon. 

My essay "Gimp Geek" appears in the second section of the book right before an essay by Violet Blue the sex writer for the Chronicle.

Bracing myself dorky for my kids

For want of this lace-up ankle brace, I couldn't go on a "leaf walk" with my daughter today, so I'm sitting here typing to you. I sprained my ankle again. A repeated pattern I have.

This time, I was walking out from the flu shot clinic. I felt a little woozy. We were supposed to sit in this crowded room with other families. I think I may have even said out loud "I don't want to stay in this cesspit of germs." I meant no offence to other families. My own family has their own germs. My son has a perpetual cold and is still on a low dose of aspirin with no shots. I'm still nervous from his long period of being immunocompromised.

Anyway, I paid for my sins. We stepped outside and I stumbled on a gouge on the sidewalk probably carved out by the devil of germs.

Yesterday a podiatrist gave me an ankle stress test. This is where he yanks your ankle in a weird position and x-rays it. He told me if the bones split apart I need an operation. Yes, it's painful as it sounds. My bones are okay. I limped back to the exam room.

The podiatrist said I have hyperflexible ankles. Nothing to be done, except physical therapy to strengthen my weak muscles. I also need to wear a lace-up ankle brace when I walk on uneven surfaces, and especially when I go on a hike or play sports. The hyperflexible ankles are supposed to be part of my movement disorder myoclonic dystonic.

Premotherhood, I might have just said the ankle brace is a bit too dorky for me to wear except when actually hiking or sporting, but now I have two young children. In fact prekids, spraining my ankle was just somewhat annoying. I'd hobble around. It was painful, but life went on.

But the past two Halloweens I've not been able to go trick-or-treating with my kids, because I sprained my ankle. So I will actually follow the doc's directions and wear the ankle braces on uneven surfaces. Therefore my ankles will look dorky on many occasions.

Now understand, I'm no fashionista despite the fact that a photo with me in it launched our local paper's fashion section. But there's not being fashionable, and then there's looking like a dork.

I really can't think of a good shoe or fashion accessory to go with this brace. It comes in black (above) and white. They remind me of Victorian boots...sorta. If I were a man, I might try spats but that was the fashion for men not women. What do you think?

Crossposted in Silicon Valley Moms Blog

I can't vote on my own anymore

For the past two elections, for the first time in my voting life, I couldn't vote on my own. I had to ask my husband to help me use the touchscreen. I have a movement disorder, but I can use an ATM touchscreen on my own just fine. However, the touch screen bubbles on the voting machine were placed so close together and the screen was so poorly designed that I could not pick the candidates on my own. Just one of the many flaws of the touch screen voting machines.

Like the rest of the country I was really embarrassed about the voting shenanigans in Florida. In response, the California politicians rushed in these touchscreen machines. Many people don't trust them and rightly so.

More than terrorists hijacking airplanes, I worry about terrorists and other extremists hijacking our voting systems. It is too easy to change the software of our current machines and therefore change people's votes. The code is proprietary. Under current law only certain groups are allowed to test the machines.

Even with no malicious intent involved, computers crash. Software has bugs. You can not count on any computer system to work flawlessly. Yet our current voting system is based on that assumption. The error checking and auditing is laughable. No business would stand for such a system. I used to work for bank systems at credit unions. Believe it or not, yes there's a paper trail for every single transaction you make, even at an ATM. And occasionally the credit union must go back and audit every single transaction. The incumbent Secretary of State only got the machines to produce a paper trail after massive protests. The fact the machines weren't designed with a paper trail to begin with indicates the massive ignorance of the current Secretary of State about technology.

Some folks say "vote absentee." That will not help you. A human will merely use the same machines to put your vote into the same flawed machines.

Before my life as a mom, I help design and deploy the infrastructure of a major broadband ISP. I thought a lot about security issues. I don't believe in government conspiracies. I do believe that my vote counts if the machines work. However I don't trust that computers will always work perfectly.

We're at a crucial time in this whole voting machine process. I actually haven't made up my mind who will get my vote for governor. I still haven't made up my mind about the huge numbers of other ballot initiatives, except I'm pro choice so I'll vote no on 85. I still have to sort through piles of information and actually read the text of all the initiatives. But I do know I'll vote for Debra Bowen for Secretary of State.

One of the first things she did as a rookie congressperson was to pass a bill to put the State Congress online. She also passed a bill to prevent identity theft. Her web site says sensible things about the voting machines. If you care about the integrity of our voting system, I urge you to vote for Debra Bowen.
Crossposted to Silicon Valley Moms Blog

Dad carries his love

C frequently carries both kids, even though he has a bad back. They're both bigger now too and Little T is a lot more squirmy. Yet he rarely says no.

She's Such a Geek Blog

The anthology She's Such a Geek now has a group blog and already has some interesting posts. The anthology's coming out in November. It contains my essay "Gimp Geek" about my life as a computer geek with a movement disorder.

My baby can dance

My baby can dance. Put some music on, and he dances as well as the proverbial white guy. He's a quarter white and a quarter size of the average white guy. He gets up and shakes his booty. He shuffles and sways to the rhythm...sorta.He holds your hands and smiles into your eyes. He likes music with a smooth steady beat. Sometimes he stamps his feet. He doesn't like it too fast or too slow. He smacks me if I put the wrong music on. Disco is good. Hiphop, but not Death Cab for Cutie.

He also shakes his head a lot at random moments and smiles at you. You have to shake your head back. He doesn't say anything, but maybe that's because I haven't given him a microphone.

You can sing him out of almost any bout of crying. My daughter knocks him down...accidentally she says. She also says, "He's not a baby anymore. He's a toddler." But I mean baby like the rock and roll term, okay? She sings "You are my sunshine" to him. He stops crying. Works everytime.

Well, except when it comes to pants and shoes. Most of his temper tantrum involve pants. He screams and yanks off the wrong pants. He's made it very clear you have to wear the right pair of pants. Baggy blue nylon pants are his pants of choice. He doesn't care about other clothing, but pants matter. He prefers them hanging low like any teenager.

Shoes are important too with a good bright color like pink. Not girly shoes, mind, but Vans. He picked them out at the shoe store. Too bad they weren't his size. He cried and cried. He insisted on trying them on anyway and clomping about in them.

On our latest shopping expedition, he led us straight into Pac Sun, most definitely a store for teens. I'm totally serious. I thought sure, why not. We're still in the 'walking is very novel' phase. He tugged onto a t-shirt. I told him he was too young, but he wouldn't listen. He lay down, and cried. We had to carry him out. Bemused teenagers watched us go.

Now I don't let him watch MTV, but of course the media controls everything. So maybe he has dreams of being on MTV as the next toddler star. They start younger and younger these days.

My mom tells me I sang songs at age eighteen months. I rode on my dad's back and sang songs to him as they hiked across the world. I also held my hairbrush as a microphone and danced in front of the tv to "Top of the Pops" a Top 40 show in England. I also told my mom I was going to grow up and be a star. Sadly for the world, I decided not to pursue a career in music. But who am I to crush my baby's boy dream? I'm signing him up for a Music Together class. We all have to start somewhere.

Weddings are for hugging

We attended a lovely wedding last weekend and love was all around. My son and another little boy had a wonderful time together. So did all the children there. My husband captured this brief moment. But it was just one of many. It truly was a wedding of hugging and love.

My baby got new shoes

I was horrified to learn my boy was wearing shoes a size too small for him and yet he learned to walk anyway. What a hero! So we set out to buy him new shoes. They must be flexible, cushioned and most importantly shoes, he'd wear. My boy cares about two items of clothing: shoes and pants. He'll rip off disapproved choices in a hurry. But shoes and pants he likes are a dream.

We're still in the honeymoon phase of walking. Little T loves to carry things to me. Anything, a stuffed animal, a sock, whatever. Just so I can watch him walk down the passage carrying that thing. Little legs go straight up and down. A toy soldier's march. Not yet the proper gait of a real walker. I find it so endearing.

We spent most of Saturday shopping. We walked and walked and walked on a trek to find shoes for Little T and Special K. Who knew shoes would be so hard? Little T loved every moment of it. It's hard to believe he just started walking three weeks ago. I marvel at each new terrain he conquers. On Thursday, he scaled sand, but only ventured a few steps on grass holding my hand. Yesterday at a friend's party he strode confidently across the lawn. He still holds his hand high in victory sometimes but less and less.

He also wants my hand less and less. Occasionally he grabs me firmly, and I must follow. But most of the time he walks off. He never looks back. I must follow after him.

At the park on Thursday a little girl threw sand in his eyes. He cried and cried. I scooped him up, terrified. I examined his eyes closely. The tears washed the sand away after thirty seconds. He sniffed and pushed me away. He wanted to get up and play walk again.

When we go to other people's houses, he just walks off now. I must go find him. At this age, my daughter used to come back for a little hug and a sit in my lap. A little warmup. He's off as soon as he can. Sure, he smiles when he sees me, but if I try to hug or kiss him, he pushes me away with a soft annoyed grunt.

Now don't get me wrong. He's a very cuddly guy, but at sleepy time, naptime, story time. All times when he doesn't have shoes on. These shoes are made for walking.

Love is a battle

Pat Bentar sang "Love is a battlefield." She must have been singing about Special K and Little T. Special K call this "a battle." "I just decided to do a battle that day." They playfully wrestle all the time together and hug and laugh and laugh. Here's the video proof.

Special K holiday sing

Special K said "What about me?" So here I give you two snippets from her star performance at her holiday preschool sing.

For every song she sang like this with her heart in every note, faithfully miming every motion to every song. She might have a career in show business. Do you know who Shirley Temple is? I think America's ready for a Eurasian one, but alas these are among the only two where she faces the camera most of the time! ;)

Little T walking

Here's my wonder boy's first day of walking. He still walks with his arm held up in victory.

Snuggling right from the start

Special K has snuggled her brother right from the start. Every morning she loves to climb in our bed and snuggle everyone. I got this on camera, because we were at a wedding in May of last year.

His hair looks so funny from the chemo. We call it his old man look.

Little T's growth is delayed but he's walking

Little T's bone age said he was between 1 year 3 months and 1 year 6 months. Chronologically he's 2 years and 1/2 month. This means his growth is indeed delayed. In the strange world of Little T land, it's a good thing, because it means he won't be a shrimp and explains why it took him so long to walk.

We're going to see an endocrinologist on Monday.

On the bright side he started walking on Saturday. He can walk household distances. On his first day he could already turn, pivot and squat.

Sorry I haven't been posting much. I have a cold and bad allergies. Everyone had health problems in September including my cats. Even my daughter got sick. I needed a bit more support than this blog currently provides.

Now as least my daughter got over her flu. My husband C is slowly recovering from his pneumonia. My cat Mori seems to have recovered from his respiratory infection. My cat Sephi has lost weight, and may have hyperthyroidism, but tests showed that she was on the high side of normal. So I'm going to wait a couple months. If she's still losing weight, we'll test her thyroid again. If it's still the same, we'll look for cancer.

My photo launched a local paper's style section

Imagine my surprise when I found a photo of me and five other of my Silicon Valley Mom bloggers on the front page above the fold. They're launching their new style section with us! It features a huge photo they took of us Silicon Valley Mom bloggers over the summer and an article written by one of the founders. Congrats on your MV Voice fashion debut, Tekla! :)

Article is here without the huge photo.

If you want to see the photos, you can download the MV Voice as PDF files
Front page

Style section

The irony is that no mention is made of me in the article, because I wrote nothing about fashion or style for the blog. I missed the Nordstrom's show and I've always had an strange relationship with fashion. In college, I was asked to be a fashion model in NYC, yet I find shopping for clothes sheer torture. I sorta feel obligated to write something now. What do you think?

Being total nerds, we're keeping Little T's food diary here on blogspot.
http://littletfood.blogspot.com/

Little T's not growing

Little T's GI doctor called us. To make a long story short, he shares our concern that Little T isn't growing.

Little T's weight and height have been basically flat for months and I've been concerned. Nice and proportional at 60% and a few months ago, one could argue the chemo or steroids were retarding his growth. However, he's been off chemo since May and on a very low dose of steroids for two months. He looks like a year old. Okay, he has the head size of a two-year old, but frankly all little kids have huge heads.

The doctor ordered a bone age test. I was all ready for general anesthesia like all his other tests. No, it's a simple x-ray. Hooray! If it's normal, my boy is just destined to be a pint sized fighter. If it's abnormal, he goes to see an endocrinologist.

We also have to keep a food diary.

C gets relief

We saw a very nice doctor today, and I don't think I liked her just because she had an English accent. She really took the time to explain things to us. I had to go too, because C couldn't talk for more than a sentence without coughing.

She explained C had viral pneumonia, not bacterial pneumonia, and that's why it wouldn't show up on the x-ray. She gave him medicine to stop the coughing and help him breathe easier. Needless to say not coughing all the time and not being able to breathe was weakening C. His O2 stats were 95, not hospital worthy, but not normal either. Normal is 100.

I'm so relieved. Much of my worry was because C was not getting better. But after just one dose he was able to go about without coughing unless he exerted himself. Now the trick is to keep him resting so he heals. Best news was she said he should get better in a week IF he rests.

When we got home, we had our longest conversation in days since C could actually talk ... in bed.

My husband blacked out

On Thursday night my husband C "blacked out" (his words) and a very kind friend took him to Urgent Care while I stayed home with the kids. Urgent Care said he was dehydrated and gave him IV fluids. Ironically my cat received the same treatment earlier in the week.

Urgent Care thought he had pneumonia as did his doctor on Tuesday. However, his chest x-ray on Tuesday didn't show pneumonia and the preliminary results from the x-ray on Thursday pneumonia didn't show pneumonia either.

Today he'll have been sick for four weeks. His breathing and coughing are worse than ever. He still has a low-grade fever and night sweats. The antibiotics his doctor gave him don't appear to be doing anything. We go to a different doctor today.

I really don't know what to think. Mostly I try not to think about it too much. My recent experience with illness that lasts longer than a few days hasn't been good.

Mori

Mori is a brave sock killer. He hunts down socks from our neighbours and bring to them to our back porch. He purrs constantly. He has been my friend for ten years comforting me by sitting on my lap. He has taken bad boyfriends two moves two kids and the whirring machinery that accompanies Little T with calm grace. He lets Special K carry him dragging his hind legs on the ground. He does his best not let Little T grab his tail or fur but if Little T does he escapes gently.

My husband has pneumonia and maybe my cat too

My husband was just diagnosed with pneumonia.

Ironically there's a possibility my cat Mori may also have the cat equivalent of pneumonia. We must wait and see.

Fabulous Four

Special K wrote her entire name for the first time today. Of course being a Silicon Valley kid, she has been able to type her name for several months.

She also just discovered the meaning of puns yesterday. She asked me "Where do cows go to have fun?" Answer: "The moovies." When I explained her how this was a pun and why, she gave me THAT look, that look which I'll prolly see a lot of when she's a teenager, "I know, mom." she said. Last month when I tried to explain puns to her, she said "I don't understand." I'm steeling myself looking forward to many years of puning ahead.

How friends does a little boy need?

Lately I've been feeling bad because my son has only three friends his age and two of them are twins.

I know that the term friend is stretching it a little for a two year old since he treats everyone about the same. He smiles hugely at them. He'll look them in the face and talk to them. It's even odds whether the words will be English or his own special language. Then later he grabs their stuff.

And then on top of that, he has an older sister who says she has "so many friends" (her words)
Of course we have to play with them, or she tells me "[X] isn't my friend anymore, because I never see her/him." Yes my daughter knows the exact guilt-inducing words to get me out on a playdate.

But sometimes I feel my son could really use more playmates nearer to his own age. Yesterday at a park he and an eight-year old boy were wrangling over a plastic spoon. My son won, because the eight year old just felt too ridiculous fighting with a boy, the size of a one-year old, who was yelling loudly. My son typically deals with older kids and this technique works for him almost always.

I want my son to learn that while it's good to hold on to your stuff, but you can't win all the time with this technique, nor is this a good way to win friends. His friends hold tight too and they just walk away holding the toy triumphantly.

I just realised I had the same concern about my son last year. And then he had another relapse and secondary infections and even if he'd gotten more friends, he wouldn't have been able to see them since he was immunocompromised. And I'm not sure where in the past three months of actually being able to see other people, I can it all. And I thought maybe this is just a proxy for my worry that it's been so long since we've been out in the world that I've forgotten how to make friends. And maybe my son actually doesn't care that much as long as we see people.

At age three he'll go to preschool (if he manages to stay off chemo and steroids long enough to get his shots). I worry he'll get picked on, because he's small and grabby. Maybe I just need to get out more and stop worrying so much.

Turandot

Turandot is one of my favorite opera. We played the last aria from Turandot at our wedding where Turandot discovers the true meaning of love. Her suitor offers her his life even though he's won the challenge to marry her.

I know I was an opera lover when I was almost moved to tears by the plight of a mother who accidentally threw her own child into the fire instead of the child of her arch enemy. Not something I'd condone in real life, but in the opera it all makes sense.

Outsource your mom work

One of the many ironies of my life is that I decided I could "only handle two kids". Then nature had the last laugh and gave me a kid who's so much work. His list of medical needs, therapy appointments and developmental exercises take up hours a day. And that doesn't include the fact that he's not walking at almost two and has various other delays, so we have all the typical baby stuff too.

He's also the happiest person I know. I laugh with him every single day. I find myself drowning in cliches. But he really is like the super sweet smiley cancer child you see on tv, bravely enduring chemo and other noxious procedures. At least as long he gets his own way.

But while he makes it all worthwhile, it doesn't reduce the sheer amount of work. I dunno how I and my husband do it. I dunno how any parents do it, except one thing at a time. Sometimes when I think of the sum total of what my son needs and what my daughter needs and what I can do, I start to panic, and feel totally bad and inadequate. In fact in many ways I have battled and overcome these need to do it all and be the perfect mom at the same time as my son has battled his medical issues. It helps a lot that my son is so sweet about his illness. But like my son, I have these little relapse and setbacks.

But the biggest lessons I've learned is outsourcing. Yeah a Silicon Valley term. This is Silicon Valley Moms blog. Before my son I totally underestimated the value of outsourcing. One of the best things a friend did for me in the midst of one of my son's medical crises was to say "Thida, you REALLY need a break." and take me out.

But before my son, I'd get stuck on guilt. Sure I'd take time off. But in my heart, I believed moms must do every aspect of motherhood, and never take any time off or I was a BAD MOM. Well okay if I had work, I could do a little less, but not really. I had to be there for everything, do everything.

I still encounter this attitude all the time. I see moms who are totally stressed and overwhelmed to the point where they no longer enjoy their own children. When I suggest they might want to take some time off, other moms chime in like I'm crazy for suggesting it. In my experience, the more work your children are, the more necessary breaks are. When I come back from a break, I come back refreshed and I appreciate my children ten times more. My children also appreciate me for about five minutes, then they go back to taking me for granted again.

Sometimes outsourcing means hiring someone, but outsourcing can also mean old-fashioned swapping with other moms and babysitting from grandparents. I do have a nanny because like I said before, my son is just too much work, and we can afford it. I also swap child care of my daughter with a couple other moms.

According to my mom, a wise Burmese woman, this "need to do it all" is a)Western thing since most women outside the West don't raise their children in houses as a couple, but rather in an extended family and b) a phenomenon of the past century. In the past, even in the West, people lived in extended families. People other than moms help raised children. Everyone acknowledges single parents have a tough job, yet somehow the two-parent family is supposed to be sufficient. With all my son's needs, I need more help than just my husband can provide.

Perhaps some moms never need a break, but that doesn't negate the fact that others do. Nor does it mean that the parents who need breaks love their children any less. This is not a question of love, but of parents' capacity to give and children's demands. Some children are more demanding than others. Some parents have more energy than others.

Mom work is very undervalued and not paid at all, but it can be very hard. Let's help each other. I rally you all to outsource mom work! Moms who have more energy and/or less demanding kids, if you see a mom that's stressed and overwhelmed, tell her it's okay to take breaks. If you live close enough, offer to exchange babysitting. Moms who are stressed and overwhelmed, please ask for help, so you can enjoy your kids again. You'll be a better mom if you do.

Crossposted to Silicon Valley moms blog

My children the aquarists

"What was your favorite part?" Special K asked over and over again on the way home.
My favorite was watching Special K and Little T laughing and laughing and exploring everything.
But Special K asked the question, because she really wanted to say "My favorite was watching the otters bang the ice against the glass." We watched the sea otters feed. Towards the end they were given rings of ice with fish buried inside. So they had to crack the ice to get at the fish.

Many of the Monterey Bay Aquarium exhibits are at Little T height, so he pulled up over and again and cruised around, even taking a few steps to see everything. If it weren't so far away, I'd take him there all the time, because it's great for his physical therapy.

We also got stamps for our Special K's Official Explorer passport. Special K got a poster for collecting 4 stamps by visiting various booths. If we get obssessive visit a lot of different places by December, she can earn 30 stamps and get a sweatshirt. But I think we're going for 20 10 stamps. Must not get obssessive. Must not get obssessive.

Mother worry

Yesterday was the kind of wonderful day I'd always hoped to have when I decided to have children. Now that's not to say that these days are so remarkable. The amazing thing I find about both my children is that they are essentially happy.

I want to say despite the medical issues that rise and fall in our lives, but that's my deal. They seem a lot less affected in general. Special K says in a matter of fact voice "Well sometimes [Little T] goes to the hospital and sometime he doesn't."

Right now I'm not living under the constant shadow of life-threatening disease, but it's left its mark. I was never a worrier before, but now I've become one. When he gets a fever, I worry that he will have to go to the hospital. Okay, so far we're only one fever not going to the hospital versus four fevers landing him in the hospital. But when he got a fever on Friday night, I didn't take him to the ER despite the hemo doctor's recommendation, because he started playing. The ER is so germy. It's a great place if you're coding, not good if you're immunocompromised. Then he got better. So I guess I'm not so paranoid in that respect.

Today he has a rash all over his back and my first instinct was to worry and call the doctor. His doctor was on vacation and the other doctor who has seen him wasn't available today. Then I thought "it's just a rash." He doesn't have a fever. Sure he's whiney. But he was sitting around waiting for me. He hates waiting.

I used to be essentially happy also. And yesterday left me feeling more like I could be again. I see a long tunnel and happiness at the end. But I could never be happy worrying that my son's life was in danger. And I was miserable for months.

To be honest, I'm not sure if I believe that he won't be in the hospital again. No one can tell me if Kasabach Merritt will return or not. They guess it won't, but they've been wrong before. My son's tumor is particularly aggressive. I get different answers about how much the drugs affect his immune system and how vulnerable he is to the nasty secondary infections that landed him in the hospital before.

I wrote this because sometimes I feel this pressure to be happy, to be in my old life. Writing this all out helped me see it's just part of where we are right now. And it's okay. I do really enjoy the joyful moments with my children, but then worry returns.

I guess I'll live with worry a little longer. My worry level has definitely gone down too. I used to go up to code blue and actually take him to the doctor or ER and find out that yes indeed he was really really sick. Now I just worry a bit he might be seriously ill, but don't actually take him anywhere. This is in fact an improvement. As the months go by, I hope my mother threat level will go down further.

Mixed headlines on the causes of autism

This graph shows the rising number of cases of autism. And the headline of the Washington Post on Monday read
Autism Risk Rises With Age Of Father
It began with "Children born to fathers of advancing age are at significantly higher risk of developing autism compared with children born to younger fathers, according to a comprehensive study published yesterday that offers surprising new insight into one of the most feared disorders of the brain."

According to a United press article released yesterday, the study was comprehensive, but it was done in the 1980's and while the number of fathers was large, the total number of children with autism who had older dads was small, only 13. There were also only 4000 children born to fathers over 40 versus 128,000 children with fathers under 40. It makes the possible margin of error enormous. It means that the higher number of children with autism born to fathers over 40 may simply be due to how the data was collected and there may be no age difference at all.

The United press article then goes on to argue how autism isn't genetic, but caused by environmental factors. I think more data definitely needs to be gathered to make any sort of conclusion. But I suspect as with most health issues, both genetics and environment play a role. Perhaps certain genes combined with toxins in the environment give you autism.

Even though I didn't agree with either article, I was glad to see more discussion about the causes of autism on the front page of a major newspaper. Also for once, dads' age is getting the spotlight instead of the usual moms' age story.

My little girl's strength

When my son was in and out of the hospital, sometimes people would say "It must be hard to have another one at home." I reply "No, it's wonderful to have her." She was my ray of sunshine in my darkest days. I'd come home from a long day at the hospital and she'd give me hug and kisses like this.

She can be sweetness and light. She can be a very demanding girl. She wants her fair share of attention. I can't say I blame her. I can be distracted with Little T, and his numerous apts, stuff to do for him, writing, and stuff to run the house. Right now she wants chocolate, her favorite dessert. She's asked nicely, so I should deliver.

How do I tell her Steve Irwin died?

I'm really bummed that Steve Irwin, Crocodile Hunter died. And I'm not sure how to break the news to Special K.

I have to admit that at first I wasn't a fan of the guy. And I certainly wasn't going to expose my children to him. I heard he wrestled with crocodiles. He sounded irresponsible and stupid. His show with the Wiggles called Wiggly Safari won me over. He seemed to have a genuine love and respect for all animals. I learned about his conservation work and his Australia Zoo. He carefully explained to the children about dangerous animals.

I watched a show in which he did wrestle a crocodile, but it was to save the crocodile. Somehow the crocodile had gotten trapped in a tiny drainage ditch and the only way to get it out was to wrap it around in chains and haul it out.

My first reaction on hearing the news was "A stingray? How could he get killed by a stingray?" Stingrays usually aren't that dangerous. In fact while I've never wrestled a crocodile, Special K and I have both petted stingrays at the Monterey Bay Aquarium.

Steve was swimming with a much larger and clearly more aggressive stingray than the ones in the aquarium. From the ABC story it sounds like a freak accident. And this is my dilemma. And this is my dilemma. My daughter is already afraid of bugs and other creatures that she deems scary. It's an arbitrary list. For example spiders are scary, but she loves reading and watching about lions and crocodiles and many other animals. Steve was her hero.

How can I explain to her that her hero got killed by a creature that she herself has petted? I will tell her that the barbs at the aquarium are clipped.

But sometimes people are just in the wrong place at the wrong time and they die. I don't know to explain that to her without making her really scared.

Edited to add: As I was writing this post on Silicon Valley Moms Blog, my daughter came and asked me to read it to her, so I broke the news. Her only question was "What do stingrays eat?" I think she's taking it better than I am.
Technorati tag:steve irwin

Love of Learning

Edited: My two kids' relationship goes in waves of fighting, or sweet sibling bliss, never in between. A couple weeks until yesterday we had a particularly long bout of fighting. Little T was smacking Special K on the face. She cried in pain and bewilderment. He'd climb over her to get somewhere else, kneeing her in the process. He'd grab her toys and scream until she gave them to him. "He's so annoying!" was Special K's constant refrain. Not exactly a great photo for Love Thursday. :) Then today as if on cue for Love Thursday, as we were driving to gym this morning, I captured more recent love.



Yesterday Special K and he had a playfight where they tumbled about and tangled legs, and laughed and laughed. After that he kept jabbering to her sweet nonesense. "I don't understand what he's saying!" Special K exclaimed as bewildered but also delighted. He follows her everywhere, tries to keep up with Special K and her friends. When she was sitting at dinner yesterday, he pulled himself and leaned his head against her several times putting his arm around her. Then today this moment. I hope love will reign for a couple weeks.


Here's the original photo of another time when love also reigned, but back in November. Special K is copying Little T, who is pointing at something and I'm sorry, but I've forgotten what he found so fascinating. So it shows Special K and Little T's love for each other and their curiousity aka love of learning.



For Love Thursday

Little T's first haircut

Check out my mullet!
My hair's in my eyes! I need a haircut!

I'm not too sure about this haircutting thing...

Hey! Where did my hair go?
Getting my hair cut is interesting


Ooh a mirror!


So handsome with my new haircut!

Hey it's a thumb!

Little T's OT poked his right thumb in some theraputty and showed him how his thumb made an impression. Then she pushed his left thumb in the same putty and showed him how it also made an impression. He stared at his left thumb in fascination. I could see the little light bulb go off in his head, "Hey it's a thumb!"

He now moves his own left hand onto the bar of his stroller. He shrugs his shoulder up or uses his right hand to lift up his left hand. I've putting both hands on the stroller for months.

Slowly catching on to this mommy blogging stuff

I've been really busy with Little T and out of the cyberloop for about two years. Eons in Internet time. In the meantime some very cool mamas started blogging.

Amazed Toddler Mom adopted JR from Kazakhstan. She's also a fellow alum of Bryn Mawr.

Chookooloonks has beautiful photos and insightful commentary about her life in Trindad with her adopted daughter Alex. I love her Love Thursday meme.

Charlotte's Journey Home is the tale of Charlotte who like my son has a number of medical challenges which are different but similar in that they both have a g-tube and had periods of being immunocompromised. Irene, Charlotte's mom found me over g-tubes. I never thought I'd be grateful about g-tubes ;)

Silent I is the journal of Glennia whom I met through my local parents' club. She just started podcasting for Career Mom Radio. I enjoyed her piece about going back to work after six years as a SAHM which is an expanded edition of her blog entry No Mom Left Behind.

State of Grace - I met Grace at the photo shoot of Silicon Valley Moms Blog. She gave everyone including me her card, so I checked out her blog. She's a very courageous blogger. I had already half decided to come back out to blogspot again, but talking to her and reading her blog pushed me off the edge.

Sister and brother love

For Chookooloonks and Momster comes another Love Thursday. From the first day she saw him in the NICU, Special K has loved Little T. This photo was from the first day she was allowed to hold him. She was so thrilled she gave him a big kiss.


Special K and Little T laugh together every day. They share private jokes between them that I don't understand. Most are non-verbal since many of them began before my son could say a word.

Special K says about Little T "He's so handsome!" "He's so sweet!" "He's so annoying!" (when he pulls her hair)

At almost two years old, but only 30 inches and 22lb, my son's small but scrappy. Special K's quick to intervene if anyone gets in his face. She says "That's my brother!" If he does something wrong, she says apolegetically "That's my brother. He doesn't know any better cos he's a baby."

Technorati Tag: Love Thursday

I celebrate my son's half shoe size successes

My son has grown half a shoe size. I know for many parents this isn't a cause to jump up and down and celebrate, but for us with a child who didn't grow for months, we're so thrilled.

On Friday, we had my son's Individual Family Service Plan(IFSP) for Early Start. We discussed his progress for the past six months, or in our case the past nine months because his IFSP got delayed like everything else. ;) The report and the goals outline which services he receives.

His ISFP report outlines how my son had another relapse of his tumor, his third, and a secondary infection. After he started chemo and massive amounts of steroids, he stopped talking if one word a day counts as talking and he stopped pulling up. He started pulling up again a couple months later. He didn't meet his goals to walk or to be weaned off his g-tube, but he's worked hard.

He met these goals:

get up on his knees, cruise 90% of the time, reach up on his toes and walk with assistance of another parent or a walker - hooray

He can also stand independently if standing for 10 seconds counts. :) Okay it doesn't, but he's working on it.

He initiates conversations. He says these words all the time "go", "ball" "bubble" "bye" "yum" "uh oh" "wow" "yeah" and "mama". He says "backpack" "car" and "dada" maybe once a week. He'll say "mo" (more) "baba" (bottle) "fire truck" "bird" and "ca ca" (cracker) if you say the word first. He understands quite a bit, but other words he won't repeat.

I list these individual words, because now I'm a parent, I no longer believe the quote "The limits of your language are the limits of your world." But these words surely reflect his personality. He's a "yeah" guy not "yes" and "wow" is actually "wowwwwwww", a term of great approval. "go" tells me to go outside where he wants to play all the time and rush around. He's so active. Backpack reflects his and his sister's passion for Dora the Explorer.

He made some progress towards feeding. He eats like a typical toddler now instead of examining each bite like an inspector. He eats 3 tablespoons at each meal instead of 1-2. He drinks 3 oz of formula a day instead of 1.

His goals for the next six months are to walk, talk more and to eat more.

And to me, half a shoe size symbolizes where we are right now. It's not the full shoe size of typical kids. But when I think about where those little feet have been in the past nine months, I feel incredibly proud of what he's accomplished.

Crossposted to Silicon Valley Moms Blog

Mother and child love captured

By serendipity, using this new bloglines tool, I stumbled upon Love Thursday asking folks to post a photograph of love. What a lovely idea!

Sometimes folks ask me "How do you do it?" One answer is that when he was born, I gazed into his eyes murky with pain and I saw love. I never expected that. I also fell totally in love with my daughter when she was born, but she wasn't hooked up to wire and monitors fighting for her life. Every day when I look at my son, I see love. Nurses, strangers and friends have described him as "engaging." I say he loves people, he loves life.


Love between me and Little T

My friend and photo genius, Morrisa captured this moment.


Technorati Tag: Love Thursday

Walking the education balance beam

On Monday my daughter graduated from Mini Star 1 gymnastics. I have mixed feelings about it. On the one hand I'm proud of her. On the other hand she seemed happy to stay in Mini Star 1 forever until her friend Sylvia moved up to Mini Star 2. I know it's the beginning of a long line of graduations and keeping up with her friends.

She's always loved gym. However when she started, she was terrified of the balance beam. She wouldn't walk across it unless someone held her hand. Passing Mini Star 1 requires her not only to walk across the beam unassisted, but to tiptoe across it.

She used to laugh and giggle at gymnastics. Now she looks more serious. I don't want to push her, at least not about gymnastics. I've talked to parents around here who sneer at parents who say they won't push their kids. I have a more nuanced view. I think sometimes we all need a little encouragement, a little nudge to do better, strive more, at the right time, because the balance beam, life is scary and discouraging. But I never want my kids to feel my love is conditional on their performance. I also think kids need unstructured play time or they will grow up as adults unable to sit down and relax.

I personally was a product of parents who pushed me too much. When we moved here from London, I was attending a boy's boarding school. My parents thrust me into sixth grade at age ten. I had a fair degree of social intelligence, but even the most socially saavy ten year old can't navigate the intriacies of twelve-year old social networks. I was lost and they knew it. It was also a small class of about fifteen girls. I made one friend each year. Then that friend's parents would notice she only had one friend and she's get transferred to a different school. Now my parents tell me not to worry about my children's education. It's terribly ironic.

And here we reach the crux of the matter. Twenty five some years later and I worry I'm not recovered enough from my horrible educational experiences to make choices based on what my daughter needs. Actually worry is too strong a term. In the grand scheme of things that concern Thida, this is a 2 where 10 was serious worry that my son would die. I know my daughter will be fine and I'm conscious this is a land of plenty problem. But nonetheless I want the very best for my daughter and my son. And it's something I can endlessly discuss with my husband, because we're deluged with choices.

But you know gymnastics is part of my recovery process. I'd never take it in a million years. It's the type of thing I'm spectacularly bad at. It requires eye hand coordination and good balance which I don't have due to my movement disorder. Horrifying stories of my youth buried and forgotten surround gym. The first time she was tested, I clenched my fists half convinced they'd flunk her.

Of course they didn't and it's all worked out beautifully. We took it because her friends were taking it. If I take that lesson to her education, we'd move to Los Altos. All her friends were living in Mountain View, but almost all are moving to Los Altos school district. Problem is Los Altos doesn't have as good special needs resources and I don't want to live in a town without sidewalks. But still I'm trying to learn to walk the education balance beam without being so scared. I'm not my parents. And while school was a place of horror for years, I did eventually go to a wonderful college and get an MBA from UC Berkeley, so my parents did pretty well after all.

We've tentatively decided to put my daughter in Spanish Immersion in the local Mountain View district. She's four this year and already doing Kindergarten math and learning to read. She has asked us to learn both. I hope learning Spanish will keep her interested enough that she won't get bored. I think the mix of students will be enough of the achievers. I think she'll do fine as long as she's not with girls who think it's good to be dumb and pretty. You know the type of girls I mean. I actually don't care about test scores so much as the social mix and not getting bored.

I have no idea what to do with my son who's almost two, but has multiple physical delays, speech delays but is socially advanced and seems bright. I think he'll catch up with his speech in the next year, but he'll need occupational therapy for his arm for years and years. We think about moving to Palo Alto, but with the money we'd spend we could pay for so much therapy. Plus we really love where we live. It's walking distance to the library, park, shops. And two of the neighbors have boys my daughter's age.

Sometimes it sounds silly to me to be thinking of education now when the kids are in not even in kindergarten, but if we change our minds, the waiting lists are long and moving, well, that's a whole other nightmare. How are you walking the education balance beam?

Blogging the Tumor

Blogging has saved my sanity in the darkest period of my life. I could not talk about it, though the problem was incredibly large and led to lots of staring when we did venture out in public. “My son has a life-threatening tumor.” It took me almost a year to be able to say that phrase. A year in which I flailed around swimming in medical jargon. I used terms like Kasabach Merritt Syndrome, hemangioma, and blood-clotting disorder. Nobody understood what the hell was going on and often they were afraid to ask, so they settled for staring or unfortunate misunderstandings of the problem. I’ll never forget how someone told me very sympathetically how her sister had bad eczema as a child, but she had gotten over it and my son would be fine too.

My son only added to the problem. I only brought him out in public when he was relatively healthy. When he was on massive doses of steroids or chemo, he had to avoid people, because his immune system was compromised. But the effects of steroids linger. Puffed up with steroids to a cherubic ideal of a fat baby, he laughed and smiled, so happy to see people. How could he not be healthy when he had such fat cheeks and a round belly? When people asked me, “How are you doing?”, I often said “Okay” or “Hanging in there.” I didn’t have any energy left to explain, not even to friends.

Finally my little ‘okay bubble’ burst when he had a relapse and his tumor regrew. It’s pretty obvious things are just not okay when your son is in the hospital receiving chemo. His fat belly remained, but his cheeks grew gaunt, his arms and legs whittled down to sticks. He looked the picture of a Third World starving baby shown on tv. The few times he ever went outside, people would stare and if I saw them staring would ask uncomfortably “How old is he?” When I’d reply, they’d look away. I wish then I’d be able to tell them I was not starving my own child. In fact at that time and up until now 600 calories pumps into his stomach every night through his G-tube, a small plug that connects directly to his stomach.

The chemo killed his appetite and destroyed the lining of his stomach. The steroids ruined his digestive system. He relapsed another time. He had infections. More hospital stays. His tumor has finally started shrinking, hopefully for good leaving in its wake lots of collateral damage. I’m still recovering.

But back to blogging. During that second relapse when I was so brokenhearted, one of my friends said “Why don’t you blog about it?” I’d been blogging in a desultory way since 2002, back before it was even called blogging. But not regularly. I didn’t have a blog voice. Now I had something to blog about. I blogged about what was happening with my son. But of course I discovered I had more to say than just a medical journal. I also disclosed more than I would have in person. This medical stuff is so hard to talk about. It makes people uncomfortable. And I have this very English tendency to just shut up when people look uncomfortable.

To say it was therapy both trivializes what I was doing and therapy which can be deep exploration. I’m learning to talk about a deeply taboo topic, infant illness. If you don’t think it’s taboo, ask yourself how many celebrities, except tough football players admit to having sick children. Now I can talk about it out loud. I no longer say “I’m okay” when I’m not. I no longer hide my son’s condition behind medical jargon. I’ve never spent a second feeling ashamed of my son or quailed from his long list of medical conditions. However for a long time I took other people’s reactions as shaming.

Last year I even put a link on dotmoms among the 600+. And I reached the point where I started to get a little traffic. Then spam arrived. I was struggling to feed my son. He was losing weight and vomiting. And I’d log into spam about diets. Now I could have complained to blogger about this outrage, but instead I ran back to more private blogging spheres.

A few folks found me anyway and commented on my posts about feeding tubes, the NICU, tumors, and other special needs stuff.

Then lately several nudges at once brought me back out. This blog. Last week I met Badgermama at a social event unrelated to blogging. Lots of post about blogher. At our photo shoot,I talked to Glennia about how hard she tried to get parents to connect to parents in the hospital and largely failing due to the hospital not getting that parents can't do two months of training. I gave Jill the Reader's Digest Summary of my son, because she asked, and I felt okay. Not comfortable because it's not a comfortable topic, but not worrying that it's not comfortable. I've crossed a new threshold.

I listen when several things happen at once. I start to believe perhaps enduring spam is worth venturing forth into more public cyberspheres again. So here am I. I know how hard it is to have a child with serious medical condition/s. I welcome your comments, but not your spam. I've only gotten this far because other folks broke the silence.

Mother and children

Thanks to my friend 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


Technorati Tag: Love Thursday

Little T makes a stand

Little T stood for the first time today. Being him, he wanted to look at a car. He's been trying to rise from his knees to standing for a couple weeks now. He bounced up and down, up and down. Today was a slow graceful rise.

But this also came at the exact same time as my neighbor came to tell us my cats have started pooing in her yard. She told us they have been for the past three weeks. C has put out for a litter box for them. Our neighbor tried cat repellent. I hope the litter box works, because if it doesn't I'm not sure what we'll do.

Technorati Tags: sons, milestone, parenting mom blog,mommy blogger, cats

I need deadlines

I spent three mornings with Mary Anne ostensibly to write, but no actual writing occurred. We had a lovely time talking and I met one of her writer friends. Actually I probably needed to talk.

We went to a mellow potluck on Wednesday. I met several bloggers from Silicon Valley Moms Blog and got my photo taken. I already wrote about my Sunday brunch. Previously a social situation in which I had to catch up or tell folks about Little T's medical issues would make me feel uncomfortable and unhappy. But I'm starting to feel more okay with it. I notice the people around me aren't comfortable, but the topic itself isn't comfortable, so why should they? I'm conscious that I prolly talk a little longer than people want, but I think that talking longer has gotten better the less I steel up to speaking and spill over like a dam breaking.

I interviewed Judy Winter on Wednesday. She was inspiring but still no writing.

My sister came down today. She said she was going to read my book proposal. And here we come to the crux of why I'm bothering to do the book proposal and not write the book first. I need deadlines. I edited my book proposal yet again. Minor tweaks. We talked about it more.

Writing good. Check. Concept clear? No as clear as it could be. I'm very clear on the concept, but the book proposal could be more clear. Will it never be finished? I'm soo sick of it. And yet I'm still excited about my book.

Why on earth didn't someone sit down years ago and tell me "see Thida writing is like parenting." The daily grind, well, the discouragement, the seeming to do the same thing over and over again, it's awful, terrible. Sometimes you wonder why on earth you're doing it. Inner voices and other people line up to tell you how inadequate you are. Your success or failure is due to your hard work, but is also due to factors completely outside of your control. But you live for those moments it's so beautiful and so right. You do it because you have to and because it changes your life and you really want it to change other people's lives.

And yes, I'm back to writing my book again.

Little T the talker

In the past week Little T has made a huge leap in his speech. He's started having conversations. I admit these conversations are on the level of Koko the gorilla and not typical conversation, but they charm me.
Mama mama, up up
I pick up my 23 pound baby. My wrists hurt.
He grins hugely at me.
Mama mama down.
I let him slide down my leg just the way he likes. He laughs and laughs.
Mama mama up up
I pick him up again. My wrists hurt even more.
Mama, down.
We repeat this game several times, even though my wrists are killing me.
Yes, he's learned "Mama will do whatever you want as long as you talk to her."

Top Ten Signs My Kids Love Silicon Valley

Top Ten Signs My Kids Live In Silicon Valley, my second post on Silicon Valley Moms Blog.

10. My 4-year old daughter says, "I can speak Spanish" and says a Spanish word. We're not a bilingual family nor does she attend a bilingual preschool.
9. My daughter takes her own pictures with our digital camera.
8. My daughter asks me, "Why don't we order that on Amazon?"
7. My 2-year old son's playgroup is coordinated entirely via email.
6. My daughter asked, "Is the opposite of ok 'cancel'?"
5. When I asked "Do you know the recycling song?" on the playground, the kids knew several different recycling songs and sang them to me.
4. My daughter sent her first email at 3 years old and received her first email at that age too.
3. I first discovered my daughter could read when she read words on a video game.
2. My daughter says, "Let's go out for sushi."
1. My daughter says, "I need to go do my work" and goes and types on her own laptop (an old IBM Thinkpad) given to her by her dad.

Hello, my name is Thida and I love exercise

I feel basically happy right now. 48 hours ago I felt totally stressed and sad. My brain kept telling me "Please end this now. I want this to stop." I wasn't exactly suicidal. Just so overwhelmed that I didn't know what to do with myself. The overall stressors in my life haven't changed much. I've fixed two things. I have arranged for more childcare. I went to the gym for the first time in two years.

Ten minutes into exercising on the elliptical machine, I realised I was smiling, partly from the endorphin rush and partly from the absurdity of it all. My legs felt a bit tight and stiff but the up and down motion felt soothing. The knobs sliding in the grooves looked silly and mechanical. The little LED lights go up and down like one of my son's toy. The timer tells me just how long I exercise like a little child on timeout. And there's something supremely absurd to me about paying to exercise on a machine. I bow to the machine. I can push myself on the machine in a way I can't left to my own devices. It makes me smile how I need technology to exercise.

I also only like the really expensive elliptical machines at the gym. My body does in fact notice the difference. The less expensive machines don't glide as well. The ellipitical machines at the gym push my knees just a tad, but not enough that they hurt. Non gym elliptical hurt my knees after 5 minutes.


I also did a few weights. See, the weight machines have a little LCD display that lights up as you lift the weight up and down. So satisfying!

I realised I have my stress relief all wrong. One of my first hits should be the gym. I get free childcare, exercise and time to contemplate the absurdities of life.

I had this idea that I hated exercise. So I'm surprised to learn I was in fact wrong. I loved the elliptical the last time I was at the gym. I just forgot about it, because it didn't fit in the 'I hate exercise' belief I had about myself. But now I must stand up and say "Hello, my name is Thida and I love exercise." I promise I'm still a nerd too.

Stress and hand

I went to my first hand therapy appointment today. My wrists are in constant pain. These folks can help relieve the tendonitis and RSI, but not the underlying issues of how I use my body due to my movement disorder. However when you're in constant pain, treating the pain is good, even when it won't treat the underlying cause of the pain. It's bad when taking 3 Advil doesn't make much of a dent.

The therapy was relaxing, but also stressful in weird ways that have to do with me and my disability. Like trying to put my hands in the paraffin wax made me jerk and the assistant was all stressed about my spilling paraffin.

After the session my wrists stop hurting for about an hour. That was really good. I may also get referred to someone who can actually treat me for the underlying issues. Even better.

The proximate cause of this recent flareup is

1) stress. duh.

2) I'm doing too much with my hands that involves locking my wrists. Luckily for you folks, that's not typing. Typing while not exactly great for anyone isn't actually a big load on my wrists. I tried no typing days in a row. Wrists didn't notice. Unfortunately for me, it's mostly activities difficult to reduce like driving, housework and childcare. Depending on who you ask, locking my wrists is my brilliant but painful adaptation to my movement disorder. Or something I can be trained out of.

I'm starting to go to the gym this week to help deal with the stress. I'm cutting a few of his OT and PT apts since he's doing better than I am.

I'll get more help with childcare and housework. I've tried for weeks to get back respite care. Finally yesterday the case worker called back and said she'd get me the PO for a new agency. She said a few days. It'll prolly be a couple weeks.

Where everybody knows your name

The place I've visited most often in the past two years is the Lucile Packard Children's hospital.

I find the place both very comforting and incredibly annoying.

I find it comforting that many of the people there recognise my son (and sometimes me) and say hi. Folks from the NICU which was two years ago still remember him. I love the people there. Almost everyone seems to be kind and keep in mind how stressful it is to be there with a very sick child.

When my daughter was visiting there a lot at her insistence, because we didn't have reliable childcare at the time, but clearly half not wanting to be there, Child Life (a hospital service) gave her an enormous stuffed dog. She named it 'Dell'. Dell has an active life and still accompanies my daughter on adventures. Never mind his size, though she can barely see over his head, my daughter lugs him around. Sometimes when Dell is not around, she'll say "I have a dog named 'Dell'." It will be a little while before the other person learns that Dell is in fact a stuffed dog.

I can't stand the parking garage. Even after almost two years, I still don't know how to park there. I often wind up parking in a compact space squashed between two SUVs. Normally I'd grouse at the SUVs, but I can't really blame them since there's nowhere else to park. About a year ago I backed out of a space in a hurry and completely scraped the side of my car on a pole, ripping off the side of my passenger mirror. I replaced the mirror and kept the scrape. I figured I would just do it again. I haven't so far, but I believe the scrape wards off the poles.

I like the carpets. Somehow they seem nicer than linoleum. I like the art on the walls. My daughter comments to me about Babar. Sometimes entire stories are told from those pictures.

I like how you can sit outside with your food, but I dislike how they are always doing construction. All of Stanford is under construction for some reason all the time. And I can't stand the constant noise. The building was built what fifteen years ago, but it has the thinnest walls ever. You can hear everything everywhere. The construction, the people in the next room, the traffic outside. My son sometimes manages to sleep when he stays there, but I never really managed much sleep there.

I love the kids' faces on the big posters that proclaim that Lucile Packard is the top hospital in the country. It used to say top ten, but it slipped down to thirteen. It's okay I don't hold it against you. I've met a few of the kids on the posters. Like all professional photos, the kids didn't look as good in person. But they were still very cute. It was both comforting to see them as real people and sad that we were there so often that we happened to meet them.

And I'm very glad we're visiting the place a lot less often.

We're not color blind unless we can't see colors

Just as I think it's silly to deny that the men and women are biologically different, I think it's silly to deny there are races, or whatever you want to call, specific genetic characteristics that tend to cluster together. There are slight differences in biology beyond gradiences in skin color. However we're far more than our biology. I think the main ways race actually denote any differences of importance is in medicine. Even in anthropology and archaelogy, people are discovering that people are more interbred than previously thought. Like gender, race is mostly huge layers of cultural constructs layered on top of a thin layer of biology. So please don't tell me you're color blind unless you can't actually see certain colors, or I'll laugh at you.

These babies all look slightly different in terms of body shape, hair type, not just skin color.


Though people fail to recognise that many multi-racial people break their standard filters for determining race. Transgendered or intersexed people break people's filters for determining gender, but that's another discussion. And especially if you're a doctor, you had better ask someone's race rather than just assume you know, because it should affect how you treat them medically.

So I don't see anything wrong with identifying someone by race or ethnicity anymore than I see something wrong with identifying someone as a man or a woman. It's usually easier to tell someone's sex, than someone's ethnicity and you might be wrong more often, but it is an identifying attribute. However I do see something wrong with using race as the sole identifier to describe someone. I'm not the Anglo Burmese woman. There are others like me.

And then of course there's the problem that once you've identified someone as belonging to a particular race or ethnicity, what you do with that information. Small children like Special K don't understand race and ethnicity, but the construct is embedded in our culture and after a certain age, it becomes part of one's way of thinking like gender. Special K already understands gender. And unless you're somehow incapable of absorbing cultural norms, I just don't believe that people don't assign people to some category of race or ethnicity. Categorizing is what humans do. How we make sense of the world.

I would argue that a person who says "I'm color blind" actually assigns everyone to the category of white. People who are rude, or uneducated, or somehow don't fit zie's notion of whatever white means are then downgraded to whatever ethnicity they actually are. That way zie is free to comfortably keep zie's stereotypes about race or ethnicity, because these people fit the stereotype anyway.

The Boob Tube

For a few years of my life, the boob tube was literally the boob tube as it was the only thing I could do while breastfeeding. Yeah breastfeeding is supposed to be this magical bonding thing between mother and child and it is for the first five minutes. However if you're fortunate and your child is healthy, your child then breastfeeds for another 15-20 minutes. There's only so long even the most adoring mother can stare at her baby's guzzling mouth and the back of her baby's head. My babies never let me read, so I turned to tv. Now I turn to tv at the end of a long day. I have talked to C. I'm tired. My brain is full. I'm still too keyed up to sleep. Here's six shows I watch.

• Veronica Mars - If you're not watching this show, and love intelligent drama, you should be. It's hard to find strong female characters anywhere on the tv landscape. Well, here you have one in the title character. Film noir meets California high school drama. Veronica is a tiny blond bombshell who's not afraid to use her sex appeal or her smarts to solve mysteries or deal with jerks in high school. The disturbing and intricate mysteries involve murders embroiled with local town politics and teen angst. Veronica has a quirky offbeat sarcastic humour and so does the show. My main beef with the show is there are hardly any Asian Americans in Veronica's town, supposedly a rich town in Southern California, surely a mecca for certain types of Asian Americans. And pretty silly of the producers to miss a key demographic.
  
  
• Six Feet Under (on DVD) - The only show I know that features a gay couple like any other couple with their problems and heartwarming moments, not as a joke or the stereotype. I fell further in love with the show when it had an episode with Susie Bright. Some folks criticize the show, because at the beginning of the show, someone always dies, sometimes in silly ways, sometimes banal, sometimes shocking. The writers research and draw these vignettes from actual deaths. People die every minute and in all sorts of ways. Life doesn't stop being weird and funny because death is involved. I discovered this show a year ago and I found myself watching this show when things were really bad. I found it comforting not in a schmaltzy tv sort of way, but because it's the only show I've seen that understands grief. How grief can make you laugh inappropriately, trust inappropriately. How you can go along seeming fine, but grief catches up with you later. It's not a linear process. This show even has an Asian character. Woo hoo!
  
  
• House - The medical details on this show don't bear too close scrutiny, at least not the one time I looked, so pretend they don't matter. They're all supposed to be medical conundrums. I just accept them as given. Anyway it's not about that. It's about House, a misanthrope doctor who professes to hate patients but loves a good puzzle. He has one friend, an oncologist, but otherwise browbeats and insults the rest of his team who stay with him, because he's brilliant and right most of the time. He's so mean and unhappy, because he hates himself and self medicates with drugs. Because of his drug addiction, other doctors missed the fact that House's own leg had muscle death and he now walks with a pronounced limp. With a bad actor, this could be an awful show, but Hugh Laurie pulls it off. And you're sucked in wondering watching him take slow halting steps between self destruction and saving himself.
  
  
• Jeeves and Wooster - Hugh Laurie used to play his complete opposite, Bertie Wooster, a English upper class twit with lots of friends who got in silly meaningless misunderstandings. Also utterly captivating and so is his very proper and very clever butler Jeeves who quotes Pope and gets Wooster and his friends out of their mad cap schemes with quiet efficiency. He also brews a good cup of tea and makes a wonderful cocktail for a hangover. Who wouldn't want a Jeeves in their life? Never mind he's a servant. In this show he loves it.
  
  
• Daily Show with Jon Stewart - If you don't know about this show, I don't know which rock you've been hiding under.
  
  
• The Simpsons - Somehow this show manages to be funny even how after all these years. Occasionally it misses, but I have to say I laugh almost every episode.
  

There's more, but my mind wandered off. I do like my tv, but in small doses unless I'm sick or I really really need to escape from real life.

More on Trader Joe's milk

tempusfugit asks "Can you talk more about the Strauss Family products? Is this for all Trader Joe's or only in the West Coast or East Coast. What about the Trader Joe's brand milk and yogurt?"

I don't know about the distribution of milk of Trader Joe's nationwide. What I do know is that the cream top Trader Joe's milk is almost certainly Straus Family. Currently this is sold in whole and 1% half gallons. In our local Trader Joe's, the only organic yogurt isn't Trader Joe's brand, but is still Straus Family. Straus Family is a northern California dairy producer, so it may not be able to produce enough for Trader Joe's nationwide. On the other hand, there actually aren't that many Trader Joe's relative to other grocery stores. You should check your local Trader Joe's.

Technorati tags:organic food,organic milk,Trader Joe's

Free food for bird brains

A month ago I installed a finch feeder

and a hummingbird feeder. I have two cats, but I've seen hummingbirds feed from flowers on the front lawn where they could (theoretically) be caught by the cats. I think I've heard finches. Both feeders are high above the ground far from where the cats could climb. Yet I've never seen any bird feed from them. The hummingbird liquid is going down slightly, so it could be getting fed from or evaporating. The finch feeder is down a touch. My friend Chris told me it takes me a month for the finches to notice and feed. Why does it take the birds so long to notice and get free food? I hear birds are smart, but this sounds very dumb to me. Oh, well. At least now they're using it. I just wish I could see them feed.

Trader Joe's Organic milk gets four cows in my book

Earlier I blogged about my difficulties finding organic milk that wasn't factory farmed. Well I'm 90% sure that Trader Joe's organic whole and 2% milk is Straus Family milk and therefore four cows.

• Trader Joes sells Straus Family Yogurt.
  
• Straus Family milk is unhomogenized
  
• Trader Joe's whole and 2% milk is unhomogenized.
  

Note that the 1% milk and other homogenized milk is NOT Straus Family milk. Therefore the cows are not guaranteed to have the idyllic conditions seen here,

but more like here



Technorati tags:organic food,organic milk,Trader Joe's

Little T has severe nerve damage, roar!

Sorry I haven't posted for a few days. My heart broke again. I went to Little T's Hand apt on Wednesday and the report said in black and white. "These electrodiagnostic studies provide evidence of severe loss of sensory and motor axons in multiple nerves in the left arm."

This doesn't actually change anything. I mean the boy's arm barely moves. And in fact since the report the boy now slightly twists his arm inward. But somehow I let myself believe what the EMG doctor told me. Why this stupid doctor (not his hand doctor BTW who's really wonderful) told me this. I dunno. I believed him, because I'm his mother and I believe in my boy. But believing he had moderate damage for a week and then hearing he had severe loss was crushing to me. I feel horribly betrayed and sad.

On the day Little T was born, they told me they would have to cut off his left arm to save his life and I honestly thought if they did so, he would die. Now I would have just refused the operation. That day I accepted him as he was, a one-armed Popeye. His arm no longer resembles Popeye's, but he's still a fighter. I think his arm will do more than what it can do now, which is mostly hanging by his side, but I'm not sure what that means. Whether that just means he pushes it around or not and makes it grasp and ungrasp things with his right hand. I'll leave that up to him and what develops.

For Little T, life is fun and a big happy game, but Little T is not a laid-back kid. He's always pushing himself. He's aggressive. He roars. When he falls down, he literally gets back up and tries again. So that means that as his mother, I can't give up on his arm whatever the numbers say, because he wouldn't. He's just too young to understand what his arm can do.

But I can't live in fantasy moderate nerve damage land either. It's a very hard thing. The past couple days I've cried several times. I think not just about his arm. But because this also feels safe to cry about. I wrote in my book that I rarely cried when he was seriously ill, because crying meant facing his death and that I couldn't bear. I think that's really what I'm still grieving.

Grieving not being able to fix things. I never dreamed I'd have the perfect baby, but I think I did dream I could be the perfect mother and not make mistakes, especially not mistakes with scary names and consequences like brachioplexus. We still don't know if that's what he has. We may never know. I will always know he should have been born via c-section.

And being Little T's mom, well being mom to any child, means that you have to leave your heart wide open to all possibilities, to dream and strive for your child's potential, while looking at him here now and loving and working with what he can do today. Little T has so many unknowns, more than most, so I'm resigned to more heartbreak. I read these books about special needs kids that don't match me. I never feel sad about him. And when I go to the hospital, I always see kids that look so much worse than he is and feel so grateful for his vitality, his zest for life, how incredibly charming he is. I always feel joyful to have him around when he's happy which is most of the time. And like any mother when he's cross sometimes I wish I could run away. Rather I'm well aware of the challenges of being disabled in an ableist world. I want him to be happy with who he is. I want to make sure I've done everything I can to help him accept himself, to live up to his full potential and to make his path easier. There's still a lot of soft biogtry of low expectation for disabled people. It's changing, but I still encounter it from time to time.

But today I woke up still feeling sad but lighter. I don't think about the past much except when the present reminds me of it. I used to blame myself for that. Why do I think about these depressing things when I want to forget them? But a couple weeks ago C asked me "What is your brain trying to tell you?" Oh! Light bulb moment! My subconscious is trying to tell me a life lesson from my past.

My past also tells me we got the most crucial bits of that bits of that day right. I saved his life. I refused pitocin which would have killed him. He didn't get surgery which would have killed him. He's still here by some miracle. I felt so all alone that day. I stared at the ceiling. I had never felt so raw and broken in my life. I wasn't sure if I wanted to live. Then a light - a nurse whose baby had died came to talk to me. She was still alive and actually working. And I realised that even if the unthinkable happened, I might actually be okay and I started to get back up.

Today I feel less alone. I have C now. We have figured out how to support each other in the ways we need. I also know other parents who had kids with life threatening issues with whom I've talked with honestly. I have close friends without kids who will listen, though of course none of them really understand. I have some kind parents with kids who will help babysit Special K when my nanny isn't available and I need help. But I still find myself crying with Special K and Little T in horrible pain not sure what to do. I didn't call any friends the past couple days. I didn't know what to say. I dunno if there's anything to say.

C says that "a support system doesn't make this stuff any easier, it just makes it so you don't fall off the deep end." I guess that's true. I didn't fall off the deep end. And I did just figure out like 90 seconds ago that maybe I should let my friends know beforehand when we're doing these upsetting tests and appointments, so they can call me and ask what's up. I tend to just avoid thinking about them until at the last minute, because I know they'll be bad news. But it'd prolly be better for my mental health. Our next upsetting appointment will be our meeting with the brachioplexus doctor on the afternoon of 8/7.

Anyway I'm still sad, but I also wanted you to know I've started to roar again. I leave you with

Special K talks about Racism

Special K has a strange understanding of race. We don't tend to talk about race much, more ethnicities, because she's a multi-racial child and those around here tend to be also. When we attended my brother's wedding, she suddenly started talking about her "black friend." I got all worried. What kind of message was I sending my child that this was the way she referred to people? But C asked her "Who's your black friend, honey?" "Eliot." she responded. Eliot is a blond, blue-eyed child who wore black that day.

Yesterday we went to the Stanford museum and saw a photo of the Klu Klux Klan. "Who are those people?" she asked. I said "They're bad people who dress up in white masks and white hats to try scare people, because they think that looking white makes them better than anybody else." She said "I don't think they're better than anybody else."

An angry young black girl according to Special K's definition

Knock knock walk me

Yesterday Special K discovered 'Knock Knock' jokes. Over forty-five minutes we spent telling them until we begged her to stop. Thank the gods for the Internet, so I could look them up. And she got her first pun. The classic

Knock Knock
Who's there?
Boo.
Boo who?
Don't cry. It's only a joke.

Most of hers were more estoric like:
Knock Knock
Who's there?
Skunk.
Skunk who?
Skunk Flower.

I hope she's not going into that heavy joke-telling phase. If she's in that phase and Little T's in the 'walk me' phase, I may truly go off the deep end.

I give you a skunk flower