Beautiful Awesome Peoples

Last weekend we have spent our time for a reunion gathering. It was so fun. At first, I don't really like the place that we stay, well....because I don't really enjoy being close to the nature, forest, rural....well I live in kulim...so...come on...its green already :)

But then being with these amazing peoples is really fun, exciting. They were nice peoples with great personality. My soul partner was a lucky man, having a bunch of amazing friends.

Friends are the peoples around us, close to us that have great influences on us. Spending time with them is not only about mingling, socializing but more than that, we get inputs, feedbacks, critism that leading us to the better one or vice versa. True friends are those who are able to guide us, help us to unleash our hidden potentials, getting the best out of us, branding us and of course support us in joy and in pain.

It is certainly not easy getting a true friends as you need to be a true friend first in order to get a true friend. and of course, in any type of relationship, putting effort is mandatory. So, don't worry about finding true friends because I strongly believed, once you are one, you will get many.

The point here is, appreciated the reunion organisers and come and join the reunion. At least once, please try to attend and be there for your friends. Your presence is like telling your friends....hey I'm here and thank you for giving this opportunity to be a friend. Can you imagine your life without your friends...must be damn boring...

So, come to reunion, thank the organisers and pat your friends. That is actually the least you can do. And if you don't....don't call yourself a friend....yes, you may meet in the social media networking...but it still can't beat the meeting face the face... because it still matter....significantly :)

if tomorrow never comes

if tomorrow never comes
or if there are tomorrow
or today or tomorrow or next next day
or the next next year
i wanted you to know that i love you
that i am proudhearted loving you
that you are adorable
and i love you so much

i felt blessed being chosen to be with you
it is an honour being your partner in this affiliation
loving you is never an obligation
but is a gift that i treasure so much

for always being there for me
for listening to me
for carrying my burden my sorrow too
for accepting the whole me
the good of me
and the dark side of me
for loving me wholeheartedly
for all these...for everything
thank you so much....

if tomorrow never comes
be strong
and stick to the plan
to be together
to meet again
in the hereafter

i love you and may this love
grant us happiness
here
and
hereafter....

little things from big hearts.....

little things that are significant....

have u done little things that are significant? i am not sure whether i've done it or not but i have a few experiences on it....the little things that you kept in mind and it changed you...it gave a strong impact to your life...the little that you count as gold...and the person that do or say that little things to you did not even realised it...

when i was in school...i used to be such a good student....i was in the first class every year...then i changed school....i entered the boarding school...i do not know what goes wrong...but my grades are really bad....dropping and dropping....i just can't focus and don't know where to focus...due to this bad results, the students are called and were given talks on how we should improved....my chemistry teacher suddenly realised that i was among those poor results students...and he said...why are you here? you shouldn't be here....his words struck me to the face like lighting....after the session...the next next day...he called me to have a personal tutorial class with him on chemistry....that are little things to him but to me. ....that means a lot....that words...that tutorial classes....even though i don't really scored in chemistry during the school years but i am really thankful to him for what he did....and because of what he did....i was so much into chemistry and further my studies in chemistry...

that are little things that have high impact on my life....

so from here i learnt...if you want to do good things or to say good things to somebody with the intention...to help them....to consult them...to share....no matter how small it is..how little that things are....please proceed...don't think too much....you'll never know on how big the impact may be on that little things that you've done....you'll be surprised....

little things from big hearts does matter :)

the driving heart

i am sitting and listening
i am not thinking
the voices seems blur...unclear...
may brain seems not functioning
it listen but not interpreted
it see but it see through....and i see my baby face and smile

oh....my brain can't function
cause my heart drove it away...
away and far far away...
i am high in my imagination
i am far away in my dreams
please let me go
please grant my wishes
please stop talking

i wanna go
leave
lost
with my heart
my driving heart

wanita itu

wanita itu seorang isteri
perlu menjaga hak suami
peribadi diri perlu kelas A
bukan itu sahaja...isteri perlu tampil berseri
perlu jaga badan..jaga makan...jaga pakaian
agar isteri mampu bersaing dgn yang ramai lagi di luar sana
yang hari-hari mendampingi sang suami
dan hari-hari juga isteri berdoa agar suami tidak lupa diri...tidak lupa isteri...
tetapi apabila lupa...isteri terpaksa redha jua
apakan daya....mahukan syurga
maka terpaksa menelan karenah dunia...
yang huru hara...

wanita itu seorang ibu
perlu berperibadi mulia
lebih kelas A
kerana si kecil si teruna si dara di rumah
memerhati sentiasa tingkah laku ibu
berdoa juga perlu hari-hari
kerana mahukan zuriat kelas A buat suami
walau pun suami selalu tiada di sisi
tetapi tetap suami mahukan yg kelas A
tanpa tahu tanpa peduli
sukarnya menjadikan yang A
kerana dunia yg penuh dengan yang D, E dan F
apabila zuriat tidak menjadi
salah ibu...salah ibu...kata semua

wanita itu berkerjaya
walaupun sibuk mengurus rumah dan tangga
walaupun sibuk menjaga diri agar boleh tampil seperti super model di hadapan suami
walaupun sudah macam bekerja 24 jam sehari
isteri...ibu itu...berkerja jua di kantor
untuk membantu suami menjana ekonomi
bukan kerjaya sangat yang isteri mahukan
tapi apakan daya
dunia terlalu memaksa...
no money no talk

dengan itu sibuknya wanita itu
menjaga rumah dan tangga
menjaga isi rumah dan tangga
menjaga ketua rumah dan tangga
menolong menjadi ketua rumah dan tangga
dan juga menjaga tangga di kantor...

walau pun sudah banyak tugas wanita itu
dia tetap perlu
menjaga diri
mendandan diri
menjaga berat badan
menjaga kedutan di muka
menjaga cinta

banyak yang perlu di jaga...
walau pun tak cukup masa untuk buat semuanya...

dan wanita itu tetap bertahan jua...
tetap mampu
tetap dedikasi
kerana mendamba cinta
dari suami
dari permata-permata hati
agar apabila mati
mendapat redha Ilahi

Adibah is 8 :)

thank you Allah
thank you Allah
for lending me Nurul Adibah
for giving me the opportunity to love to live to look after Your Jannah girl

thank you Allah
thank you Allah
forgive me for there are times in difficulties
that i wish to turn back time
to reverse back life
to give up hope
o Allah forgive me....forgive me....

thank you Allah
thank you Allah
for the strength
for the happiness
for the togetherness
for the health and wealth that comes together with Your Jannah girl
thank you so much.....

Let's choose to be fit and healthy :)

In my life, now is the phase where i have to think about health, about reducing weight so that i wont't be in the obesity category, to be fit, to enable me to run and play without having to face the out-of-breath situation at only the first 2minutes....hmmm....

It is not that before this i did not need to think about reducing weight and stay healthy but before this my life, my schedule is very different. I eat a lot but i remained thin because all the calories were used. But now...i eat a lot, but i do nothing. So the calories were all turned to fat which then turned me to over weight. I have lost the pleasure of eating a lot but did not put on weight. Missed those years...

Ok...enough of the pass....time move on and so do us...we need to move on....and this is what make life interesting...you were given different set of tasks at different time...so you need to once in a while strategize again to fit our conditions...or else life will be bored la kan ;)

I would like to be fit. This is my mission. And this mission is in my dream. Execution wise - failed.

I wondered why it failed. And i say to myself, because i love eating. I don't see ways on aligning the mission and the action. Hence the mission become mission impossible, the version of mission impossible without mr tom C in it...

I've read in Dr Covey book on how a man decided to be healthy....the story goes like this....

I had been working very hard in my career. By the time i turned forty-five, i was quite successful. I was also about sixty pounds overweight, a compulsive eater during times of stress, and one who didn' t have time to exercise regularly because of work. On his fifth birthday, my son, Logan, gave me a book on healthy living. Inside, his mother had helped him write the following words: "Daddy, for my birthday this year, I want you to be healthy. I want you to be around a while". Talk about a punch in the gut..ouch...that plea from my son changed my perspective of my lifestyle completely....

The story above is quite long in Dr Covey's book and i am lazy typing. But this man committed himself to being healthy for his children, not to lose weight but to be healthy. The plea from his son is a strong driver to him to be healthy. So, i need that strong driver too. I need a real purpose, the end in mind of what i wanted from this mission. And in order to stay persistent, i need to remind myself of the purpose and vision again and again...

But yes....what else could be a good driver for you other than your love ones. We need to be healthy for our love ones so that we could go through life with them happily. We can't compromise work and money with health. Working and working while ignoring health will most likely resulted with us spending that money that we earned to cure our unhealthy body. And if we die due to our recklessness in taking care of our body, then we shall have to answer to Allah. So, why choose this option?

No time to exercise? I often gave these reasons.....and well....there are reasons that you can get rid of...if you want to....

The truth is ugly....but yes....we are what we choose to be...We are responsible to our own body....so before its too late....minna san...let's practise healthy life style :)

12 years

it's been 12 years
thank you Allah for lending me
a wonderful husband
a generous caring best friend
an outstanding soul partner
a fantastic funny team mate
a kind-hearted man

thank you Allah
thank you Allah

but still i wanted to ask for more

let love unite us till we reach Your Jannah
let this love grow stronger with time
grant me strength capability and skills
to be the perfect wife for this great guy
because i am now so greedy ya Allah
i wanted to love and to be love by this man till the end of my life

o Allah....

but still i understood
your plan is the best plan and
hence your plan came fully equipped

thus again thank you Allah...for these lovely 12 years and more years to come...insyaAllah

my little big bunny

i have a little big bunny
she is little but she is big
she is cute like a bunny
she make noises like it was so funny
and when she giggles, my world so sunny

my little big bunny
why are you so big but little
why are so funny and make my world shiny
why you often smiley when the world is crazy
oh my little big bunny
oh my little big bunny

i was always confused with my little big bunny
because she was little but big
she was cute but is not a bunny
she is so funny, smiley and smarty
oh my little big bunny
don't worry
you will always be my baby

career?

Recently i have been thinking about quitting job. But it is not about whether i should quit or not but it is about what to do after i quit. What is my plan? Alhamdulillah...i have never thought that these days....the days when i am thinking about my life...about my passion without the element of worry-about-money in it....thank you so much to Allah and my husband for these days....

A few months back, i attended a wedding of my old best friend...she is a phd holder now...and another old best friend...a high rank officer that worked at an oil and gas company at klcc...hmmm....at that time...i am a bit shamed with my current career status...what if i quit my job and my status is housewife...how will it feel....i've been there for a short while and not so sure on whether i am able to carry the title again...will i...after having that housewife status, will still be interested to meet my sophisticated...intellectual friends...or i just stay home and away...to be emotionally protected and safe...

but another part of me...wanting to spend my time...my entire time with my kids and my husband....to live together under one roof and stay closer...like what a family should be, to me.... being far and away with my life partner often make me worries of his condition....and making me felt useless as a life partner...eventhough we have a mutual understanding of why we remain this way and leading this kind of life...but still the ideal case for me...a family should stay under one roof together....

and will giving up my career be fine with me...eventhough i felt ashamed with it but i actually have given up my career...this ladies working world is not for me....and now looking at my life partner's career....i felt proud because i have contributed to the born of another muslim businessman....he got what he wants, successfully...what matters most in having a career is that you love what you do....its your passion...then only it will be call...on top of your career ;) or else it will be call...working for money and money alone...

okay...so come back to me... the aging woman with low career status planning to quit and become a housewife but have houseless skills and still clueless of what to do at the house...hmmm that's me....

when i was at mid valley...we went to a bookstore and i found these books...








hmmm i was thinking....i can write these books....hehehe....i can, of course if i can really focus, consistent and persistence..the missing elements in my life...

no wonder nothing happens....

mirror...mirror...in my heart

i look at the mirror
and with a smile i start the day
and wonder where is he
and next i...check the phone
did he call while i were fast asleep
did he leave a message
if there is none
i wonder again....why didn't he
is he okay....

and my heart beat faster
i am smiling
happy....excited...with tears falling down
seeing him is all i need
hearing him is what i want
hold to him and never let go
is all that i dreamt of

i look at the mirror
and say to myself
i love him
so very much
and wishing for all the best in the world
for him
for the love
that i treasure in my little tiny heart...
for all that matters..
the love is in my heart
forever....unconditional...

and they looked and looked again

Yesterday, we went to Rawang. We, the 4A plus mak, abah, Ana and Umar....since it was a one day trip, it was a sort of tiring journey..

My parents don't usually travel with Adibah, hence they often get too excited when Adibah making loud noises or crying. However, with my beloved soul partner, I have no worries..

And Adibah of course will attract people like magnets to see her....so, we often have the situation when people looked at her and looked again with question-mark-like facial expression or sometimes the like-looking-alien facial expression. Either one is fine with us....again we applied the practice-makes-perfect attitude. I guessed it will be the same with me if i don't have a special child. So, it's ok.

Knowing that Adibah is an attraction, we often take time to introduce her to our friends. This introductory package is often conducted by my soul partner. He will decide when we shall took Adibah with us to meet our friends. Usually we shall tell them before hand that we have a special kid and then only we took her with us. This is done just to avoid an overwhelming situation. People will of course asked us why or what happened to her.

So, we shall explain and here goes the script
1) no problem at all during pregnancy
2) after 2 weeks born she start coughing because of the leaking of blood at the heart goes to the lung
3) from there we detected heart failure and other failures and that she is not normal
4) then she had a heart surgery
5) then the other check up that resulted with her having zero vision and zero hearing
6) we tried to go for cochlea implant but not possible as the implant may not work for her due to her nerve issues

These are the stories often told...what i usually don't tell is how we cried when she had to go through heart surgery...how i couldn't stop my tears when she was confirmed blind...heart break when the hearing test resulted with she can't hear even the noise at the highest desibel. Not to mentioned when the doctors put all sort of wires and tubing in and out of her body.....being so scared when she is sick because i don't know why she is sick and what to do....

But alhamdulillah...we were given her plus the strength to survive with her plus the rezki that come with her plus the love that unite us even closer and tigther to each other.

And alhamdulillah....we loved her so much. And even the doctors can't access to her brain, i knew that she is brilliant. She can't see but she knew where and how to move in and out from the bedroom to the living room. She knew we were around near her even though we did not touch her and she will come to us and put her head in our laps. Once i put hankerchief at her neck, she knew it's eating time. And most of all, she is very sincere. If you see her smile that means she is truly happy. Her expression is the truth.

When we were on our way back from Rawang, we stopped for solat at Tapah. At the praying room, there was a grandma resting. I then quickly performed solat and Adibah also quickly went to tempat ambil air sembahyang. It's like she knew that there's water there and making a fuss like asking me to change her diaper. The grandma was worried that Adibah was already ready to play with the water. She then asked about Adibah and as usual i told the same story. Earlier, when telling others about Adibah, i can't stop myself from crying. Tears will automatically falls....but again practice makes perfect...now i can do the story telling without tears or tears will be just in my eyes and in my heart.

Adibah had survived all these years and so does the family. She brings joy to the family. When we travelled with her or doing the intoductory package with our friends, we encountered many type of reactions. Some pity her and us and some congratulate us. Of course i would prefer the latter one....

No matter how others see her, to us,she is our daughter and so deserved to be love and treated like any other daughter. She may not see, so we shall be her eyes. She may not hear but we shall speak to her like she can hear us. Her growth may be delay, so we shall stay young with her.

This is our family and like any other family, we shall love and support each other in joy and in pain ;)

the vow

i vow to help you love life
to always hold you tenderness
and to have patience that love demands
to speak when words are needed
and to share the silence when they're not
to agree to disagree on red velvet cake
and to live long in your heart and always call it home

i officially love you
in all your forms
now and forever
promise to never forget
and this is once in a life time love
and knowing in deepest part of our soul
that no matter what that may tear us apart
we will always find our way back to each other

Di Kejauhan Ini

Sayang,
Di kejauhan ini
kusentuh hatimu dengan rasaku
debarnya debar cinta
denyutnya denyut setia

Kuusap air matamu yang jernih
dengannya kusulam rasa kasih
kutatap matamu yang duka
di situ kutemui makna rela

Sayang,
Di kejauhan ini kusapa salam setiamu kusambut senyum mesramu
onak, duri, dan jeriji besi ini
takkan menghalang bicara
rasa kita berdua

Sayang, sayang, sayang,
semakin terpisah cinta kita
semakin indah
semakin jauh cinta kita
semakin kukuh

Kita boleh hilang segalanya
Namun kita tidak mampu kehilangan cinta!

by Pahrol Mohamed Juoi - Cinta kerana Allah

answers

once a while....on and off....i'm doing the thinking process....thinking of where my life is leading to....to support the thinking, I've been reading and reading and feeling....trying to connect my heart and my brain...trying to figure out answers to all my questions....

often in looking for answers, we used to look far....beyond everything else....but to my great discovery, the answers to all my questions was not far....was very near....was in me....was i not realised that the answers was in me...was very close or i could not see the answers because i wasn't looking for answers at the rightful channel....

or even worst....i knew where to look for but refuse to do so because of my own self denial....i am trying to avoid the answers because the answers were not like what i imagine it would be or not as per predicted using my shallow way of thinking and the very-limited-resources that i have....

the answers were in a manual
all that we need is....
to have strong faith that whatever being written in the manual is the best for us
and to follow the manual...

it sounded simple but may be a bit difficult for a stubborn one like me
but it is doable

having to follow the manual will need high courage, persistance for may be you have to go against the world
and you have to realign your heart and mind
for what the things that majority is doing may not be the right things that should be done

hmmmmm
the guru is right
life is difficult
but we have manual
so cheer up
and ask for strength
for persistance
for love
to do the right thing
to follow the correct thing

may we achieve the goals of our life here and eternal :)

syukur Alhamdulillah

when i look up
i see the stars the moon
i felt envy....hurt
the stars were smiling
are they laughing at me
where is me?

i can't find myself
where is me?
i use to smile with big heart
with joy with the stars and the moon
but now i am down
with heart ache
with pain
with tears

i thought the stars were my friends
but then i discovered....the stars only wants the moon

and so i am torn between those two
i look down with tears in my eyes.
luckily my brain....still with me
and hence i am glad....
after those tears
after those pains
i knew where i stand
i knew where i belong
i knew where i should be
i knew where i want to be

every pain had a reason
and for that reason....i felt so bless
thank you Allah :)

cinta dalam hatiku

selalu hatiku teguh
yakin akan perasaanku
tetap akan pada cintaku
meluap-luap penuh dengan rasa kasih dan sayang
terhadap insan yang sangat aku cintai
demi membina istana yang bukan akhirnya di dunia
tapi di syurga

namun kadang-kadang
aku tertanya-tanya adakah penting elemen setia?
atau kerana cinta yang mendambakan syurga
elemen setia hanya untuk si bunga
bukan untuk si kumbang yang bebas mengaut cinta

dan bagaimana pula elemen percaya?
percaya akan cinta itu tetap bagiku
percaya akan terus ada cinta untukku
percaya si kumbang akan kembali setelah pergi
dan yang paling penting
percaya yang cinta itu bertambah dengan faktor usia
bukan berkurang dengan elemen curiga dan dusta

aku makin keliru dengan hatiku sendiri
aku tidak mahu curiga
namun acapkali hatiku kini ragu-ragu
bolehkah aku terus menaung cinta
tanpa mengharapkan setia
hanya berpandukan syurga

mampukah aku?

kereta kuda emasku

pada suatu hari indah berseri
ada seorang puteri bijak bistari
puteri rupawan berbudi pekerti
patuh dan taat pada tuan besar empunya bumi

suatu hari di hari jadi
puteri dianugerahi hadiah misteri
dari Tuan Besar empunya bumi
sebuah kereta kuda emas melengkapi diri

kata tuan besar empunya bumi
puteri.....
jagalah hadiah ini
suatu hari nanti
akan kupanggil kamu kembali
dan kereta kuda emas inilah yang akan membawa dirimu kepadaku kembali
dan jangan lupa mungkin suatu hari
kamu perlu berkongsi kereta kuda ini
dengan puteri-puteri lain di bumi
pada waktu itu hendaklah kamu rela dan berbakti
tidak hanya mementingkan diri sendiri

puteri sangat suka hati
menerima kereta kuda emas idaman hati
dijaga dibelai setiap hari
ke mana sahaja dibawa pergi
hari berganti hari
kereta kuda emas semakin berseri
girang hati puteri tidak terperi

tiba-tiba pada suatu hari
puteri menerima khabar dari tuan besar empunya bumi
puteri.....
seperti yang telah dijanji
sudah tiba masa kereta kuda emas dikongsi
sudah kutetapkan puteri yang satu lagi
maka bersedialah untuk memberi
kereta kuda emas yang sangat kamu sayangi

mendengar perkhabaran ini
dukacitalah puteri terus menyediri
meratapi takdir yang menimpa diri
puteri tahu yang dia telah berjanji untuk berkongsi
akan tetapi
kasihnya pada kereta kuda emas itu terlalu tinggi
tidak lagi dia ingin berkongsi dengan mana-mana pun puteri di bumi ini

datanglah puteri kepada tuan besar empunya bumi
tuan oh tuan besar empunya bumi
tidakkah tuan berasa simpati
puteri tidak mahu berkongsi
apatah lagi merelakan kereta kuda emas dinaiki puteri yang satu lagi
hati puteri bagai dipukul cemeti
sakitnya rasa tidak terperi
kereta kuda emas amat dikasihi

puteri oh puteri
kata tuan besar empunya bumi
sudahkah kamu lupa pada tujuan asal kereta kuda emas diberi
untuk membawa kamu kembali
sekiranya kamu tidak mahu menerima ketetapan ku ini
maka kereta kuda emas mu ini
tidak akan dapat membawa kamu kembali kepadaku...tuan besar empunya bumi
adakah kamu tidak mahu kembali ke sisi
selaku puteri yang amat kukasihi
adakah kamu lebih kasihkan kereta kuda emasmu dari aku, tuan besar empunya bumi
tidakkah kamu bersyukur dan menyedari
setiap yang aku beri pasti akan kuminta kembali
kerana hanya aku pemilik hakiki
akan semua benda, yang hidup mahupun yang mati

oh tuan besar empunya bumi
maafkan puteri
maafkan puteri
mengikut kata hati yang tidak mahu berkongsi
mengikut nafsu yang membutakan hati
mengikut rasa cemburu yang membelenggu diri

maafkan puteri
maafkan puteri
puteri mahu kembali kepada tuan besar empunya bumi
puteri mahu disayangi oleh tuan besar empunya bumi
maka puteri relakan kereta kuda emas pergi dari diri
walau amat pilu rasa di hati
namun demi mahu kembali kepada tuan besar empunya bumi
dalam keadaan indah cantik berseri
puteri bukakan pintu hati
untuk menerima yang semua yang terjadi
pasti yang terbaik untuk puteri

oh kereta kuda emasku yang amat kukasihi
kurelakan kau dikongsi
walau dalam hati amat terluka dan sepi
pergilah dari diri
dan ingatlah sentiasa bahawa kasihku tidak akan berkurang walaupun seinci
kau tetap kukasihi sentiasa dan tetap di hati
akan sampai tiba masa nanti
tunaikan tanggungjawabmu untuk membawa aku pergi
kembali kepada asalku.... tuan besar empunya bumi....

pergi...tidak kembali....

Melihat mereka pergi dan pergi lagi
Saban hari ada saja yang pergi
Pergi langsung, pergi tidak kembali
Yang muda, yang tua, yang bayi, sedia atau tidak
apabila sudah sampai masa pasti pergi jua…

Pergi itu sudah pasti
Kerana Janji yang sudah dimeterai sejak azali
Yang tidak dapat ditolak, ditambah, dibahagi
Samada mahu atau tidak
Tidak relevan lagi
Kerana apabila telah tiba waktu
Tiada yang dapat membantu
Tiada apa lagi yang perlu
Melainkan 3 perkara itu

Dan aku di sini masih termangu-mangu
apakah masih ada lagi
waktu untukku……


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C.H.A.R.G.E syndrome

I’ve almost forgotten to publish this entry….The Syndrome that Adibah’s is having – CHARGE syndrome. We did not learn of this syndrome from the doctors but from a meeting with another children with CHARGE syndrome. Until today, the doctor did not confirm of Adibah’s syndrome because of the unsuccessful blood test…we have been taking the blood since Adibah’s was born. But still the results are uncertain. They can’t confirm the syndrome because of this. But it’s okay.

Meeting a boy, named Faiz, somewhere in middle of 2011, assured me that Adibah is also having the same syndrome as he is, CHARGE syndrome. This is because, Faiz and Adibah having the same physical features, almost exactly the same especially at the ear, it is really obvious. They looked like siblings :) Only that Faiz’s sight is much better than Adibah. Based on the discussion with the doctor later after the meeting with Faiz, Adibah’s having severe CHARGE syndrome that leading her to deafblindness. Each children with CHARGE syndrome may be having all the 6 features of CHARGE but at different level or severity.

Anyway, we love her...so, we shall work it out to make sure that she's happy and we're happy....this is what count....the rest, does not matter cause ALLAH will clear the path for us :)

These are some of the information obtained from CHARGE Syndrome Foundation

About CHARGE

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments.

Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display.


History of the name "CHARGE"

The name "CHARGE" was a clever way (in 1981) to refer to a newly recognized cluster of features seen in a number of children. Over the years, it has become clear that CHARGE is indeed a syndrome and at least one gene causing CHARGE syndrome has been discovered (see below). The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Those features are no longer used in making a diagnosis of CHARGE syndrome, but we're not changing the name.

Clinical Diagnostic Criteria (2005)

Even though a gene for CHARGE syndrome has been discovered, the gene test is very expensive and isn't perfect -only about 2/3 of people with CHARGE have a positive gene test. Therefore, the diagnosis of CHARGE syndrome is still clinical - based on the medical features seen in the child. An evaluation for possible CHARGE syndrome should be made by a medical geneticist who is familiar with CHARGE. The clinical diagnosis is made using a combination of Major and Minor features. Major features are characteristics that are quite common in CHARGE syndrome but relatively rare in other conditions, and are, for the most part, diagnosable in the newborn period. Minor features are characteristics which are also common in CHARGE, but not quite as helpful in distinguishing CHARGE from other syndromes. They either are common in other conditions (e.g. heart defects), harder to diagnose consistently (e.g. typical CHARGE face), or may not be diagnosed until later (e.g. growth deficiency). Finally, there are "Other" features - these may be very important in terms of health and management, but are not very helpful in determining if a child has CHARGE syndrome or something else.

What causes CHARGE syndrome?

CHARGE syndrome is a genetic condition, caused by a change (mutation) in a single gene, most often CHD7. In August, 2004, the first major gene for CHARGE syndrome was reported by a group of researchers in the Netherlands. The gene is CHD7, located on the long arm of chromosome #8. It is a regulatory gene which plays a role in turning other genes on and off. Changes (mutations) in this gene have been found in more than half of all children with CHARGE tested to date. In the vast majority, the mutation was new in the child - not detected in the parents. This confirms that CHARGE syndrome is a genetic condition caused by a new mutation in a dominant gene. Further research is needed to find other genes that can cause CHARGE and to determine the function of the CHARGE genes in the developing fetus, babies, children and adults.


Can you have another child with CHARGE syndrome?

It is possible, but not likely. The empiric risk of reoccurrence is at most 1-2%. That means if you have one child with CHARGE, there is a maximum 1-2% chance of the next child also having CHARGE. Prenatal diagnosis may be available if a CHD7 mutation can be found in your affected child. Risk to children of individuals with CHARGE is probably 50%.

Love...Love...Love...

Today, I felt like going cheesy….I’ve watched a malay drama last nite, which I seldom do and it seldom touched my heart. But last nite, felt like crying. In the drama, the fiancé of this girl died. The dying part is not so tragic. The proposing part is sweet, and the being-in-love part is romantic, the togetherness is arghhh….I wanted to feel that again…….feeling so in love, like you can’t be without him, feeling like waking up the next morning and all that appear in your mind is him, feeling like smiling all day because of the way he look at you, how he smile at you….that kind of feelings…

The crying part is when the fiancé died and the girl missed him so much. She can’t smile, she can’t stop thinking about him and she called his number just to hear his voicemail. This part is touching….it really touched me because as usual….one of the things that I am so afraid of facing is losing my love ones….well, of course…everybody does…

Ahhhh….love need to be shown, need to be express, to be promote…
what if your love one leaving you without you having the chance to say how much you love him,
your love one leaving you without you having more time to spend with him,
your love one leaving you without you having the chance to say good bye…..

sometimes you may forgotten your love ones….so, love needs reminder too….
pretty face may not last,
age will increase,
strength may decrease….
so what will make you stay….LOVE…

Rama band – Saat-saat Terindah

Saat kau hadir dalam hidupku
Terasa Indah
Hanya Bayangmu Menyentuh Jiwa
Temani Sepi
Kini Semua Cinta mu t’lah pergi
Meninggalkan diriku
Dalam Kehampaan
Sendiri…
Waktu terus berjalan dan memberi perih di hati
Hanya rindu yang aku dapati bukan cintamu
Kini baru aku menyadari
Kau begitu berarti di dalam hidupku ini…
*Saat – saat yang indah
Saat masih bersamamu
Waktu kita berdua
Dan mewarnai dunia
Semua yang telah berlalu
Kini teringat lagi
Kini terkenang lagi
Ku ingin kembali…3x
Hanya rindu yang aku dapatkan bukan cinta mu
Meski kini kau tak mencintai dirku lagi
Kini baru aku menyadari kau begitu berarti
Di dalam hidupku ini…