Discussion thread on fund raising for Charmaine is up:
http://www.facebook.com/home.php?#/topic.php?uid=53217919641&topic=8358
We need more ideas, and more funding for our dear Charmaine. I have also approached a public funding,pending for a medical social worker to submit the application form up. However, such fundings are usually only applicable for patients in Singapore, we are hoping that they can understand why we need to send Charmaine to US, since Singapore hospitals could not provide for that.
As for Charmaine, minus the hair drops, you basically cannot see that her body is fighting with the monster right now. She keeps jumping, webcaming, eating, demanding for Yakult, Meiji Milk etc . She has put on quite a bit of weight, and her cheeks are so chubby right now. Very cute. Today, she stopped me from heading home and said I had to go to her place before I can go home. So, almost reaching her place, Char called my cellphone.
"Hello, Charlene jiejie, where are you? Why so late haven come?"
"I am in the lift (ok, i lied), coming up, you count to 10 ok?"
So when I was at the doorstep, the kids shrieked out loud for dont-know what reason. And Cynthia was very amused that Charmaine really counted 1 to 10 by the door after we hanged up the phone.
The treatments by Charmaine also meant that Jase do not have a proper schedule to follow, and studying wasnt the top priority for any of the two kids. Jase has spelling test the next day, learning : Noodles, Cereals and Biscuits. I wonder who he has the genes from, but everytime without fail, when i take a book to him, it takes less than 3 secs to hear him saying, later, tired etc.
But it is also very interesting to see how he skips no opportunity to impress his mum, Cynthia. He stood there, memorising the three words, wrote them down a couple of times, until I was sure that he remembered all, and let him show off to Cynthia. And all it takes, was less than 15mins =D
After that, there is nothing more to say, except, PLAYTIME! We rolled, jumped, curled around the bed and mattresses, until Charmaine's hair was soaking wet.
Till tomorrow then, lovelies!
Love, Charlene
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... her body is fighting with the monster right now..here's a story about the monster written by Steve Dolling, father to Spencer (diag NB stage IV at age 6). warning... tear jerker.
The Monster
There's a monster. It lives in our house.
It moved in a long time ago. It must have been hiding in the walls because we didn't notice him for the longest time. But it was there. It's the funniest thing because I never really believed in monsters. I thought they were the stuff of fairy tales. Imaginary beasts that people made up to explain their fears. They weren't real though. Were they?
But now I know they are real. The thing about monsters is they're not just big and scary and with sharp teeth. Bears are big and scary with sharp teeth, but they're not monsters. The difference is that the monster has a malevolent streak. It's not there because it wants to eat your garbage; it's there because it means to do you harm. Disney got it all wrong in Monsters Inc. Don't believe it. That's all imaginary. Those kinds of cute cuddly monsters don't exist. Steven King has it right.
The monster sometimes comes into our room at night and slithers underneath the bed. Its hot breath comes right through the mattress. It leaves me sweating, scared, unable to sleep. And then a chill settles in like the window was left open on a January night.
We’ve tried to kill it a dozen times. Sometimes it seems like we’re winning, but still it won’t die. And even if we kill it, I have this terrible feeling it will come back from the dead like just like in the sequel to a bad horror movie.
It's a clever beast and follows us wherever we go. There’s no escape. We can never see it because it hides in the shadows, but it’s always there and has ways of making its presence known. We can’t live a normal life.
When we got the dog, we thought maybe he would scare the monster away. The dog is smart and brave, but somehow he doesn't see the monster. The monster, though, is keeping its distance. But somehow I think it might be smarter than the dog and just waiting for its moment.
Try to explain a monster to your friends. They can hear what we’re saying, but they don’t quite believe us. We still have all of our body parts, and none of us has quite gone insane. They’ve never seen the monster even though they’ve been to the house. Still they get the sense that something isn’t quite right. Some of them keep their distance. Now we just smile and say, "Oh the monster...he’s gone back inside the wall. We’re doing fine."
Sometimes our monster doesn't seem so scary. On a sunny day, when the kids run in the park laughing and playing, we forget that it’s back there waiting for us. You have to forget for a while, or it will get inside your mind and drive you over the edge.
There are professionals who know how to deal with monsters. Ordinary folks never meet them other than on a social basis. We feel better when we're with the professionals. They seem to know what they're doing. But at night when we are home alone, there is just us... and the monster. The chill returns.
There's a monster. It lives in our house. It lives in our boy.
http://www.caringbridge.org/canada/spencer/
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