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
Thursday, January 26, 2012
Wednesday, January 18, 2012
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%.
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%.
Friday, January 6, 2012
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…
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…
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