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……


Selimut putih

Bila Izrail datang memanggil
Jasad terbujur di pembaringan

Seluruh tubuh akan menggigil
Terbujur badan dan kedinginan

Tak ada lagi gunanya harta
Kawan karib sanak saudara

Jikalau ada amal di dunia
Itulah hanya pembela diri

Janganlah mahu dikenang-kenang
Engkau digelar manusia agung

Sedarlah diri tahu diuntung
Sebelum masa kerenda diusung

Datang masanya insaflah diri
Selimut putih pembalut badan

Tinggal semua yang dikasihi
Berbaktilah hidup sepanjang zaman

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%.