It had been a long time that I failed to write down anything for almost a month, felt a little bit of guity but was really out of time...
Before going to Taiwan, MLDA was invited to a dinner orginized by Persatuan Peniaga-peniaga Kecil at Min Kok Restaurant on 19 Sep 11, just 3 days before we flied off to Taiwan. We were hoping to meet up with Dato' Sri Liow Tiong Lai as he was the invited VIP for the dinner.
We had our 1st committee meeting in Baharudin/Yati's house in USJ end Aug on this. And we also had our 1st Skype conferance call a week before the dinner to make sure things are on the right track. We felt the most important thing will be the memorandum to Ministry of Health. The memo write up only got started in the early Sep after the first meeting. We were hoping to be able to pass Dato Sri' Liow during the event. But unfortunately YB could not make it in the very last minute, nevertheless Datuk Yeow Chai Thiam had received the memorandum on his behalf and promised to pass on the copy to Dato' Sri Liow. This event was out in the 3 major Chinese Presses China Daily, Sin Chew and Nan Yang in the local news section. Besides, the organizer was very kind to offer help to get us donation during the night. And CSL too donated 10 cell phones, the sales of the proceed will be the donation for the night. We got RM6866 in total, thanks to all that came forwards to help us boost the donation.
The memorandum really took a lot of my time as I just wanted to make sure that it is short but at the same time long enough to tell Dato Sri' Liow about LSD patients request. And it should not sound too pushy, nor shall it be too flat of a tone. It must have some desperate feeling in it...So ended up, I was looking into the memo over and over again... I didn't really have the heart to do my Taiwan trip packing and moreover. To add on to my last minute job list, my girls' infusion fell on 20 Sep, the next day after the dinner. It was supposed to be on 16 Sep, but it's our Malaysia Day; the doctors did not allow the hospital to have any infusion during holidays or weekend. However, they can't cope with too many patients on 15 Sep. We had no choice but to accept on either 19/20 Sep, on the following week. 19 Sep was totally out as it clashed with the dinner.
Ended up, every preparation was rushed on 21 Sep, a day before the trip. I went to bank to bank in the donation. I went to bank to withdraw money to be changed into Taiwan NT$. I went to the souvenier shop to pick up souveniers for the Taiwan MPS and TFRD. I must make sure no dirty laundry will be left in the house as we would be 10 days away. I must made sure no perishable items were left in the fridge, got to start to distribute things to my neighbours. Towards the evening, then only I was settled for the packing. Then I got to think of how to make sure enough clothing for all and not exceeding the checked weight. I regreted not asking for a bigger checked in weight when coming back from Taiwan. A total of 40 kgs was not enough, therefore I got to reduce my clothings. It was into early morning on 22 Sep that I was finally satisfied with all the packing. I was tired to death...My mind was looking forwards to the 4 hours fligt hoping to be able to catch up on sleep.
Did my plan work out? We will see...
Wednesday, October 12, 2011
Thursday, September 15, 2011
A Great Fund Raising Piano Concert From Rare Disorders Society Singapore
Our family plus my parents in law attended the RDSS organized fund raising Piano Concert in KK Woman & Children Hospital in Singapore on 3 Sep 11. It was a very rushing trip, my girls were at KL for their infusion on 2 Sep 11. Then we were at Singapore the next afternoon. Nevertheless I enjoyed the concert very much. RDSS has done a great job. All the children that appeared on stage had tried their very best to play the pieces that I believed they have practiced for some time. Though some may have showed a little bit of panicky, but they never quit and played on.
My attention was attracted to 2 of the presenters. One of them is the little girl Adelyn that is blind with a rare eye disorder. She is in her 9 or 10 years old (can't remember clearly now), she had really played whole heartedly; you will be able to sense the extra energy that she had put in on the keyboards. Despite her vision loss, her pieces were so touching. I would still give her perfect 10 even though she is not blind, there is no difference at all...
There was another great presenter, a young chap at 13 years old if I was not wrong. I was enjoying his music, but could not tell where the music comes from...It felt strange to me that I had never heard of it before. I love to listen to classical music but just haven't heard it before. It was only when he had completed both pieces and when the MC interviewed him that it was revealed both songs were actually composed by him. I just can't believe my ears...At the time of his presentation, I noted that he was a talented player but I would never expect his talent is so much more.
Then Patricia (RDSS's president) went up stage to share a note written by a recently passed away little angel, Xin Er's mother. The feeling was very heavy. But I got to salute Xin Er as she had fought her battle in a warrior way though she lost at the end of the battle. My tears run down when Pat's nieces started singing the song "Firefly" in Mandarin....A lot of mixed feeling...
At the end of the session, I got a chance to carry Chloe (Pat's daugther with Pompe) and we have taken photos too. She is left to fight on without Xin Er around but I see her strong fighting spirit and her parents too. I think she will be grow up just like Wei Ling one day. Wish her well...
There are 3 videos's that I am attaching with this blog, take a look yourself...I was trying to upload but it took hours and not done by. So, I settled for attaching the link. Once you move your moust to the text for few seconds, you will see a line appeared under the text. Click on the text again, it will direct you to the youtube page.
Little Adelyn
Little composer
Tribute to Xin Er
KF wrote on 15 Sep 11
My attention was attracted to 2 of the presenters. One of them is the little girl Adelyn that is blind with a rare eye disorder. She is in her 9 or 10 years old (can't remember clearly now), she had really played whole heartedly; you will be able to sense the extra energy that she had put in on the keyboards. Despite her vision loss, her pieces were so touching. I would still give her perfect 10 even though she is not blind, there is no difference at all...
There was another great presenter, a young chap at 13 years old if I was not wrong. I was enjoying his music, but could not tell where the music comes from...It felt strange to me that I had never heard of it before. I love to listen to classical music but just haven't heard it before. It was only when he had completed both pieces and when the MC interviewed him that it was revealed both songs were actually composed by him. I just can't believe my ears...At the time of his presentation, I noted that he was a talented player but I would never expect his talent is so much more.
Then Patricia (RDSS's president) went up stage to share a note written by a recently passed away little angel, Xin Er's mother. The feeling was very heavy. But I got to salute Xin Er as she had fought her battle in a warrior way though she lost at the end of the battle. My tears run down when Pat's nieces started singing the song "Firefly" in Mandarin....A lot of mixed feeling...
At the end of the session, I got a chance to carry Chloe (Pat's daugther with Pompe) and we have taken photos too. She is left to fight on without Xin Er around but I see her strong fighting spirit and her parents too. I think she will be grow up just like Wei Ling one day. Wish her well...
There are 3 videos's that I am attaching with this blog, take a look yourself...I was trying to upload but it took hours and not done by. So, I settled for attaching the link. Once you move your moust to the text for few seconds, you will see a line appeared under the text. Click on the text again, it will direct you to the youtube page.
Little Adelyn
Little composer
Tribute to Xin Er
KF wrote on 15 Sep 11
Wednesday, September 14, 2011
I am going to Taipei soon
For the Taiwan trip, I had no time to do any packing yet, even though this time, my entire family will be flying over to Tao Yuan. We are going to stay in Taiwan for 10+ days. We are going there to attend a MPS conference and the kids could attend their children workshop. 1 stone 2 birds. We think it's a good family outing plus it's time to get my kids to learn about what me and hubby do. There will be a gathering too for Pompe patients. This is great as my girls are yet to meet up with any Pompe patients of their age. Those that we had met are mainly babies and 1 adult. Can't wait to meet up with other Pompe families from Taiwan and Hong Kong. Out of the 10+ days, the first 4 days are mainly for official matters. The left behind 6 days are completely free of any obligations. We have booked the hotels and had our trip planned. This round, we will go to Taipei, Tai Chung and Sun Moon Lake. There are a lot more places we would like to go, but time does not allowed us to do so. We will just go there and execute the travel plan, the pace of the travelling is very much dependent on my little princess Wei Ling. I am not sure how well she will cope up, so we are going to bring her stroller after some good advise from Kwan and Wan Yu (she is from Kao Tsiung). But this Taiwan trip is not well accepted by the school as we are going to make use of 7 school days...The new principal almost refused to release my kids, but luckily it's not school exam time yet. We come back just 1 week before the exam...I have to promise her that this will be the last time that we have such a plan. In our nowadays society, result and exam is our kids's entire life...It is a pity but I don't know how to turn it around...
Why do I sound too busy until no time to pack, cause there is a "tumpang" dinner on 19 Sep 11, MLDA had gathered about 40 members and families to submit a copy of a memorandum to our beloved health minister. In the memorandum, we are voicing out the patients' treatment right even though the diseases are rare and costly. For the past 1+ week, I was cracking my head trying to put down words into the memorandum from the skeleton given by the adviser. I am not a good writer so it takes me a longer time to compose. Besides, I have to call the parents 1 by 1 to invite them to join the dinner. Hardly do I have 1 call kautim everything. I have to make at least 2 calls to get the members to join us. In certain cases, I have to talk for a long long time before I could convince the parents to come. Apparently, I am not a very good negotiator. After joining MLDA, notice that I need to polish up a lot of skills, writing, convincing, counselling, presenting and time management...Those are just some of the more critical ones, there are more skills to be mastered...Like a Chinese saying "活到老，学到老；学到老，学不了！“。 It means we have to continue learning as long as we live, and there will be no end to the learning.
KF wrote on 14 Sep 11
Saturday, August 27, 2011
我的婆婆妈妈,我的守护神!
这一路走过来，有两位我一定要谢谢的贵人；那就是我的家婆和我的妈妈。如果没有他们我想现在的我不知会是怎么样？
每一次她们都在我有需要的时候伸出双手，扶了我一把。小时候的玮玲是医院的长客，久不久就来一个肺炎，间中或来一个大泻不止。搞到我差一点精神分裂。。。现在回想起也不知自己是怎么样走过来。只有惨惨惨的回忆。。。
她们两位老人家总是我一个电话过去，下一刻（通常是家婆，因她比较急性而且也住得比较近）或第二天（我妈都是安顿好老爸，然后自己撘巴士来）就到我家帮我照顾两个大东瓜。让我在医院陪伴小瓜时没有后顾之忧。
我的妈妈甚至在我生了老二及老三后（这是老爸也被逼跟过来），陪了我老半年才安心回老家。虽然她还有老爸都不太适应我家的环境，但都硬硬撑了下来。我的三餐都是她老人家在张罗，想想还真是有点惭愧。但同时也是超幸福的。。。
而家婆总是在每两个星期五我带两位公主去KL放药时来我家报到，帮我看看我的王子。从来没有听过她言累。。。
虽然今天不是母亲节，但还是想谢谢她们无私的奉献及不求回报的付出。
妈！真的有您们真好，但愿您们都能身体健健康康，每一天都能安枕无忧。。。
建芬 于二零一一年八月二七日
她们两位老人家总是我一个电话过去，下一刻（通常是家婆，因她比较急性而且也住得比较近）或第二天（我妈都是安顿好老爸，然后自己撘巴士来）就到我家帮我照顾两个大东瓜。让我在医院陪伴小瓜时没有后顾之忧。
我的妈妈甚至在我生了老二及老三后（这是老爸也被逼跟过来），陪了我老半年才安心回老家。虽然她还有老爸都不太适应我家的环境，但都硬硬撑了下来。我的三餐都是她老人家在张罗，想想还真是有点惭愧。但同时也是超幸福的。。。
而家婆总是在每两个星期五我带两位公主去KL放药时来我家报到，帮我看看我的王子。从来没有听过她言累。。。
虽然今天不是母亲节，但还是想谢谢她们无私的奉献及不求回报的付出。
妈！真的有您们真好，但愿您们都能身体健健康康，每一天都能安枕无忧。。。
建芬 于二零一一年八月二七日
I Decided To Get A Portable Hard Disk...
My old Toshiba notebook is running slower nowadays, unlike the earlier day when my sister passed me. It used to run pretty fast. But not now...So, I have brought it to see my friend in S2 that knows how to fix up the notebook. I thought he would be telling me that my PC was too old and needed to be replaced. Then I could have a good excuse to replace my notebook. But no, that's not what he told me. Instead he told me the notebook was ok, only thing that the storage was not. Almost 90% of the capacity (miserably 60G) had been used up, therefore there was not much resources for the PC to run.
So, instead of getting a new notebook for myself. I got myself a 500G portable hardisk, that is a cheaper solution. I had planned to transfer all my working files into the new hardisk as those files were the ones that took up most of the spaces.
After buying the new hardisk, I started with the file transfer. While I was doing that, I found so many old photos that I had almost forgotten about their existence. There were some videos too especially those that had been taken while the kids were much younger. I was like going back into time, all the old memories started to resurface after so long...Things were no longer in my normal storage, suddenly appear out of nowhere. No wonder we need to take photos and videos cause it is really the best way of keeping the progress of one's life. At the same time, all the emotions embedded with the memories started to get agitated too. There are sweet, bitter and neutral feeling behind each photo and video. But when I take a new look at it now, I noticed I could be at ease with the emotional roller coaster that I once in...
I think it's a good practice to revisit the old photos once in a while, then we had a chance to do some reflection. I do not know for others, at least for me I think it's a good way to consolidate all the loose thoughts in my mind through refreshing of the old memories. At the end of the day, I became more settled....
KF
Wrote on 27 Aug 11
Side note:
This blog is supposed to be published earlier. But I have overdone my file transfer so much so that I have accidently removed some of the system files, so my notebook got too upset and refused to run at all...Now, it's in the hand of my friend. I don't know when I am going to get it back but I hope it will not be too long cause I missed it so much...
So, instead of getting a new notebook for myself. I got myself a 500G portable hardisk, that is a cheaper solution. I had planned to transfer all my working files into the new hardisk as those files were the ones that took up most of the spaces.
After buying the new hardisk, I started with the file transfer. While I was doing that, I found so many old photos that I had almost forgotten about their existence. There were some videos too especially those that had been taken while the kids were much younger. I was like going back into time, all the old memories started to resurface after so long...Things were no longer in my normal storage, suddenly appear out of nowhere. No wonder we need to take photos and videos cause it is really the best way of keeping the progress of one's life. At the same time, all the emotions embedded with the memories started to get agitated too. There are sweet, bitter and neutral feeling behind each photo and video. But when I take a new look at it now, I noticed I could be at ease with the emotional roller coaster that I once in...
I think it's a good practice to revisit the old photos once in a while, then we had a chance to do some reflection. I do not know for others, at least for me I think it's a good way to consolidate all the loose thoughts in my mind through refreshing of the old memories. At the end of the day, I became more settled....
KF
Wrote on 27 Aug 11
Side note:
This blog is supposed to be published earlier. But I have overdone my file transfer so much so that I have accidently removed some of the system files, so my notebook got too upset and refused to run at all...Now, it's in the hand of my friend. I don't know when I am going to get it back but I hope it will not be too long cause I missed it so much...
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