Monday, July 31, 2006
We had Mathilda and Julia over today. Four hours of insane playdate. Vince and Mathilda had a great time.
Edda did well also, following the kids around, being close to them and being interested. She also was a bit agitated. There were screaming sessions, but I think no one was too freaked out or anything.
Sunday, July 30, 2006
It was strange to wake up without Dad. I had gotten used to having him in the house again.
We booked a taxi for Dad - he insisted that we shouldn't wake up, but Jeremy did hear the door close at 4:50 am and he woke up and ran to say good-bye, but Dad had already gone off in his taxi.
Saturday, July 29, 2006
Well Vince was so distraught after watching the safety video (abandon the duck! abandon the duck!) that he demanded a life jacket ("I need the thing that will protect me!!" he wailed) and clung to me for dear life. Edda wanted a nap, so she screamed much of the time. Dad seemed to enjoy it as he was sitting far away from the distressed kids and close to the tour guide who answered all his questions. You know dad, he loves to ask questions. Find a stranger and he will figure out a question to ask them...
This evening, we had a potluck at Julia's house to say goodbye to the Bodes. We got there at 7 pm sharp and it looked like we wouldn't make it until 7:30 pm, but somehow we pulled it off and stayed until 9:30. Jeremy made a kick ass salad..
Dad is leaving tomorrow morning at 5 am. It's been great having him around helping with the kids.
Mom! He washed the dishes every night!
I love you!
I love you too!
I love you three!
I love you eight!
I love you a million!
I love you a million plus 1!
Playing with Edda for the past three weeks, I realize how much tough & hard work are ahead for us as a family but, as an optimist, Edda will do her best. She is a brave girl.
Love you all :)
Friday, July 28, 2006
My dentist in New York was so cool and so smart. She had her office decorated with all modern furniture (I'm sure all flea market finds, tastefully matched but funky too). She played eclectic music over her sound system and had nice retro art prints hanging on the wall. I never knew a dentist could be so cool.
She also went frequently to dental conferences where she could learn about the newest techniques in dentistry and she loved to go and hang with the other cool dentists. But she still didn't hold back the bad news that my crown needed replacing and it would run, oh, about $1000. Yikes! And then she headed in with her drills and picks.
But this dental story isn't about me, it's about Edda. Edda loves to grind her teeth. Lately it's gotten pretty bad, you can hear her do it every 5 seconds and you can hear it clear across the room. It's sounds really, really bad.
I also noticed one of her molars had this brownish crap in the little crevice which I was dreading was a cavity.
So what do I do with the fact that I feared a cavity in a 2 year-old's mouth? I promptly got 4 recommendations of dentists and then didn't call any of them! For months! I finally made Jeremy call. I'm such a big chicken.
We finally went today to see the dentist. He was very nice - looked about 20 and had a huge collection of Coke cans in his office. (Strange, huh? A dentist collecting sugary drinks... Hmmmm...)
Final verdict: No cavities. Nothing much to do about the grinding. We got shooed home in about 10 minutes and didn't get charged for the visit.
Thursday, July 27, 2006
Many people have talked to me about grief and crying. I have found myself crying many times in the past 6 months, most often in the middle of the night when the house is quiet and everthing is dark. It is then I don't have shrug my fears aside and the magnitude of Edda's disabilities sometimes overwhelms me.
Since my dad has been here, I've left Edda at home a few times so I could visit friends with Vince. My dad is great with Edda, in the afternoons, she needs to nap and eat frequently. I hate to admit it, the visits were easy with just Vince to manage. Vince does have his own issues (don't think he is an angel every moment), but Edda is unpredictable with her moods and awkward in strange places and when she is pissed, it is often hard to console her or figure out what she wants. Each time I left Edda behind, Vince asked why she wasn't coming. I felt bad for leaving her behind. I know in the future, our family will be splitting up trips and activities. This is almost what pains me the most, that we can't do absolutely everything that I thought we would be able to do together, but perhaps this is an unattainable fantasy for even completely non-disabled families.
Vince and Mathilda playing. Where's Edda? Not around.
Wednesday, July 26, 2006
He told me all the regulations on the subway, no food, no pet, no duran (? smelling fruit), etc. Well, the good news was that we didn't get lost. The bad news, it was just too short.
We bought Edda a new swimming suit. Vince treated himself with ice cream, of course. And I had the privilege to take the subway with my grandkid.
Vince was a great tour guide.
Tuesday, July 25, 2006
Jeremy: (shrugs) I dunno.
Doris: I want to go home.
We have no house in the US. We have no address. The address we use for our mail is a mail stop at Jeremy's US office in Austin, TX. It's hard to miss home as much as I miss home and not have a physical place to miss.
In the 10 years Jeremy and I have been together, we have lived in the following places: Catalina Dr, Pasadena, CA; Lyndon Ave, South Pasadena, CA; McLaughlin Ave, San Jose, CA; Hester Ave, San Jose, CA; Fair Oaks Ave, Sunnyvale, CA; Riata, Austin, TX; Barton Hills Rd, Austin, TX; Juliet St, Austin, TX; Hsinchu, Taiwan; Bard College, Annandale, NY; Millbrook, NY; Wappingers Falls, NY; Singapore.
That's a lot of places (13) and I'm not even listing the 2 times we moved to Bard College or the hotels we've stayed in for at least 3 weeks. It's been hectic around here.
I love to move, I love throwing old crap away and staring new again someplace else, but having my kids really makes me want to settle down and get to know my neighbors and see the same dentist for more than a year. (Every dentist I see asks if I've had my full mouth x-rays within the last 5 years - that usually means 2 or 3 dentists ago. How can I possibly remember?) Maybe have some friends I don't have to re-explain my past (engineer), my present (mom) or future (who knows?). Now that would be great...
My mom is so cute. Look what she got us from Old Navy. Vince is grumpy, but Edda and I look great!
I am still in Singapore right now and will leave early Sunday morning. Although my stay is a short one, I treasure every moment of it.
Vince is a good boy and Edda is brave, to say the least. I saw her fell so many times, but almost every time, she walked with her knees until she reached a chair or sofa in order to get up again using her hands also. Sometimes, she gave those innocent smiles you really couldn't interpret. Occasionally, you called her and she turned her head and I thought that was one of the most memorable moments that I experienced.
Too bad, three weeks stay is almost coming to an end. And it gave me some memories that I always remembered :)
Sunday, July 23, 2006
Saturday, July 22, 2006
I've pretty much reached a good enough milestone here, and I'm able to store and verify all my files from the various storage archives that we have. It's nothing fancy, and there are some features I'm missing. It's a work in progess as they say.
I did manage to take a break and go out to dinner with Choon, Pei-Sun and Joe. Joe is a friend of Choon's from high school and he's out here on an extended business trip. Also, he's making his way to Austin next week, so if you Austinites out there have any restuarant recommendations to give, I'll gladly pass it his way.
Also work won't stop me from preriding Downieville on Sunday. I'll have to try to get in this ride as fast as I can, and then drive back to the Bay Area. Hopefully we'll wake up by 6-7, do the ride, be done by noon, drive home and I can be at work around 4-5. I hope I don't kill myself . It's super technical.
In more Jocelyn news, oh joy of joys - She's moving to Milbrae sometime very soon to work up in the Bay Area for a year or so. Her new guy actually lives in Sunnyvale, which of course, means that I'll probably cross paths with her quite a bit more in the coming year. I'm doing cartwheels. I am. Really.
I'm going home now....
Friday, July 21, 2006
Thursday, July 20, 2006
Edda got her first EEG today. I suspect it will not be her last. She didn't enjoy getting the electrodes pulled off her head. But the test went fine, we'll get the report in a few weeks.
Tuesday, July 18, 2006
I sat with Edda in her school all days last week and met a bunch of special kids with lot of disabilities among them. It was heart breaking to see all that. Well, all mankinds are not created equal.
This week, since Edda does not have school, I am taking Vince to school and back. His school is just across the street. He is enjoying his school very much. After school, we were in McDonald's twice already. I guess that was everyday. Tomorrow, absolutely, no McDonald's.
At home, I hanged around with Vince and Edda. I also went to swimming almost everyday. The pool is shallow and fairly clean. It is a nice place to be. But, I miss Mom a lot :)
Monday, July 17, 2006
Here's a funny picture from Lynn and Jack's Wedding reception the other night. From left to right, Choon, Pei-Sun, Lynn and Jack. Choon was a bit tipsy as you can see in the photo, and was pretending to take off a few buttons from his shirt. HAHAHAA.
Sunday, July 16, 2006
We saw her last night at her hotel and this morning at the zoo and Edda sure did put on a show about how difficult she can be. Lots of crying, mainly because of the heat and the fact that she didn't eat at the right time. But lots of crying in public always puts me on edge... Blah.
Can you stand another picture of us at the zoo? I didn't get a picture of Charlotte. Grumble. Only me and some birds.
Hmmm, I'm not really the best dresser am I? The pants are a bit large and what's the deal with my belly button? And the wonderful laynard with house key and magnetic card. Spiffy. Oh well, at least I look happy, that's nice.
2:40:38 AM blehargh: oh you're opening the floodgates here
2:40:42 AM blehargh: i'm warning you
2:40:51 AM james_s_robertson: hmmmm
2:41:05 AM blehargh: you can still take it back. heh
2:41:24 AM james_s_robertson: nah, i won't take it back
2:41:29 AM blehargh: heh. okay
2:41:47 AM blehargh: well the short of it is that Lynn and Jack had sorta of a wedding reception tonight
2:41:56 AM blehargh: and it was a really nice affair
2:42:11 AM blehargh: but somehow I ended up sitting next to Jocelyn and her BF.
2:42:18 AM blehargh: and you know that's fine
2:42:36 AM blehargh: I'm cool with, you know, being in the same room as her and all.
2:42:56 AM blehargh: i just really really really think it's rude when she decides to try to engage me in conversation
2:43:08 AM blehargh: when 1) I've made it clear that I don't want to talk to her
2:43:27 AM blehargh: and 2) I have never initiated any conversation with her in the past year
2:43:41 AM blehargh: you'd think someone would get the hint, that I DO NOT WANT TO TALK TO YOU
2:44:18 AM james_s_robertson: i see isee
2:44:19 AM blehargh: i just wish she respected me enough to accept that
2:44:30 AM blehargh: so I take it pretty personally there
2:44:45 AM james_s_robertson: so you think it was malicious or just negligant?
2:45:01 AM blehargh: niether in a way
2:45:38 AM blehargh: i think she's just trying to make herself more comfortable in an uncomforatble situation
2:45:51 AM james_s_robertson: hmmm, ok
2:46:37 AM blehargh: or i think, in a way, she feels like she's done me wrong, or the situation shouldn't be as it is, but i don't think she understands that it's not about how she feels anymore
2:47:19 AM blehargh: so she feels uncomfortable and wants to move away from that
2:47:30 AM blehargh: and use being on good terms is the only way to do that
2:47:53 AM blehargh: but she just charges ahead without taking my point of view into consideration
2:48:33 AM blehargh: anyways. there I'm done.
2:48:33 AM blehargh: thansk
2:48:43 AM james_s_robertson: np....
2:48:56 AM james_s_robertson: do you think you'll ever get her to understand your point of view?
2:49:06 AM james_s_robertson: (i guess that's hard if you don't want to talk to her)
2:49:14 AM blehargh: what's the point?
2:50:06 AM james_s_robertson: yeah, ok
2:50:39 AM james_s_robertson: man, is that all you've got? i thought there were more rivers of outpouring here :)
2:50:46 AM blehargh: heh
2:50:58 AM blehargh: her new BF seems nice
2:50:59 AM blehargh: ha
2:51:08 AM blehargh: how's that?
Saturday, July 15, 2006
I realize that this isn't Ruby's fault really, it's our fault because we are such wimps that Ruby feels like it's her duty to protect us from even the smallest schnauzer.
But with Dad at the other end of Ruby's leash, she seemed to know that he was in charge and with only one exception, Ruby pretty much behaved. (There was a bit of a growling match at the cafe, I think I saw Ruby's teeth, but the other dog was wandering off leash, not a good idea. I didn't get a good look at it, I only turned when I heard the growling).
Dad, who I know has always wanted a dog, loves Ruby and presented her to every little kid walking in the park. "Come on over! Nice dog!" It was very sweet to see.
Friday, July 14, 2006
Well, I would have posted this awhile ago, but there was other pressing concerns at the time. Anyhow, I've finally retired my old old sad pair of Birks, for this shiny spiffy pair. And black too! So thanks to Doris and Jeremy for the wonderful present!
Too bad I can't seem to wear my brown belt anymore... sigh.
But today for whatever reason - lack of sleep, Edda's last day of summer school school, the weekend without plans coming up - I was bummed. It's when I think about the years ahead of sleepless nights (Edda still gets up 2 or 3 times a night and takes about an hour of singing to fall asleep at night) or perhaps not being potty trained or if she is in pain, not know exactly where she hurts becuase she can't tell me, or even if she forever keeps putting her damn hand in her mouth for the rest of her life - well, I just want to throw in the towel. Kick the can. Bah humbug.
Don't worry, I'm sure this feeling will pass. It always does.
There are a lot of people coming to visit us next week. I'm not sure how the stars lined up, but so many people are flying 24 hours to reach our humble home in Singapore that we are going to have a party. Shhhh, don't tell Vince or else he won't sleep for days.
Thursday, July 13, 2006
Wednesday, July 12, 2006
Dad has also been rocking Edda to sleep at night. She usually gets up 2/3 times a night and either Jeremy or I get up. Last night, she slept though the night or so I thought. Dad had actually gotten up at midnight when Edda stirred and rocked her back to sleep.. Amazing. So sweet.
Vince this morning was on a nail polish kick. His friend Samantha has blue fingernails and he wanted to replicate it. We used dry erase marker which was driving me crazy because it kept coming off and Vince wanted me to reapply it. I had to pull out the old gender card and tell him that boys don't wear nail polish, and he wiped his nails clean and went to school. Now I have to say, I don't really care if he wants to paint his nails bright red, it's just that I know something is brewing on at his school about boys vs girls and I'm not sure what his teachers think about nail polish on boys..
Edda had a therapy session today and these ladies were interning for the summer with our physical therapist. This is their last week! They took a shine to Edda. It'll be another 2 years before they get their therapist degrees... (OK, not the best picture of Edda..)
Tuesday, July 11, 2006
One of my co workers, who was listening in on my call since we all have cubes, was making fun of me over IM during the phone call. He wanted me to get her phone number. laff.
I went to the prata shop today, and the guy who works the register said to me, "You are always so happy and lively when you come in, what's your secret?" This came as such a surprise to me because I consider myself a grouchy-grouch. I told him that the prata shop was the only time that I really had to myself and I felt just a little bit removed and relieved from my responsibilities, I'm happy to sit for a few minutes and eat a prata and have a glass of fresh lime juice. Such simple things make me happy these days.
Monday, July 10, 2006
Dad made it to Singapore. He got in at midnight last night and at 5 am, he managed to pat Edda back to sleep! Pretty impressive. He was a trooper today, went to Edda's school and stayed up almost all afternoon. It's going to be nice having him at home. We don't often spend this much time together.
Saturday, July 8, 2006
We all had a great time, especially Edda who spent the day laughing and enjoying herself, even though there wasn't any air conditioning. She ate well and walked a lot through the zoo. Vince also was great, even though he didn't have a playmate his own age around, he enjoyed all the adult and baby company.
Jeremy loved figuring out how to fit 2 babies, 1 preschooler, 2 strollers and 4 adults (3 of which are taller than 5'10'') into our minivan. He loves to pack things, minivans, tupperware, vacation schedules. It's all good.
Here's a photo of Edda which I have to post even though it is blurry and generally a terrible picture (look at that flash! ugh!) simply because she is looking straight into the camera and smiling. Because she doesn't really answer to her name or commands like, "Hey! Look over here!" gettting her to look in any particular direction is particularly challenging. Vince took the photo, he might have better luck than the rest of us at getting Edda's attention.
Friday, July 7, 2006
It was very very nice to see you after all these years. Sorry that Chris is
taking your place now.
I do not know how to say to Doris. Please send my best regards to them when
you visit them next month. My heart is always with the little girl. I
never thought that it will happen to my family, but it does.
Good luck to you and wish you a happy boy always!!
Edda is very happy and healthy and does not seem to be in any physical or mental distress at this time and for that, I am grateful because I know these things are not a given for children with Rett. Actually, in the grand scheme of things, I still consider myself a fortunate person. I have loving family and friends, I have a roof over my head, plenty of food to eat and access to good schools for my kids and doctors for anyone who gets ill. It's a good place to be. As for having Edda, she is 1 in 10,000 - she's a pretty unique girl and if her soul had to end up anywhere in the world, it's just fine that she landed into our little family. We'll do our best to care for her, just like we all do our best to take care of each other each day.
We will see day by day what the future holds.
Thursday, July 6, 2006
After reading articles from the internet and judging from the current conditions- Edda has normal size of head and she can walk, it is not that bad. Hope she is on the better side and has mild forms.
But we are not alone. As a matter of fact, every family has to face some kind of challenges, big or small. Life can never be perfact. Lets face the challanges and you have all the supports from us.
Dad is leaving the day after tomorrow. We will be in office and are going to make up some time tomorrow. Take care of yourself first. Then you can take care of the rest. Love you all.
Tuesday, July 4, 2006
Sunday, July 2, 2006
We went hiking today in the rainforest. It wasn't as humid or as mosquito-ridden as our trip to the marshland last week, but it was much more effort. Lots of uphill parts. We climbed a whole 500 ft to the highest point on Singapore. Jeremy and I parodied our first argument as a married couple. We were climbing a 14,000 ft mountain in Colorado on our honeymoon and about 4 hours into this hike that I didn't really want to do because I had been a bit unwell (I was proceeding rather slowly), Jeremy offered some hiking suggestions which for some reason, I took really personally and I just sat down in the middle of the path and cried. It took us a few moments to recover from that argument and it has been smooth sailing ever since. Ha ha! Yah for hiking, it's great to have a chance to do it again, I really enjoy it - just walking and looking at nature and the vast diversity of it all. Vince' would have never agreed to hike this and Edda, well, we would have had to carry her most of the way. Although I did see other 2 and 4 year olds hiking with their parents.,.,