Thursday, January 26, 2012

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

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%.

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 fiancĂ© 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 fiancĂ© 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…

Friday, December 30, 2011

Am I your best friend? BFF?

Did you sometimes wondered, who is your best friend? Or do you have best friend? Or are you someone’s best friend? I wondered of these sometimes...I used to have best friends during the school years, university years...used to...these friends that I considered as my best friends are in my facebook friend list... But I guessed those years are over...Is it distance? Or is it time constraint? No phone calls? No meetings? Leading to the changes in status from best friends to just friends.

Yeah...we need to move on. Peoples changes, life changes, and of course best friends changes too...I treasured my best friends, the precious moments spent and I am so sorry for myself for we are no longer in that terms, best friends. I wished I would have all of my best friends once again but I am certain that it is impossible since I am also not able to commit as a best friends. It is just unfair to only want something, knowing that you are not willing to give, only wanting...

Now, my only best friend is my husband. I have him only. I am assured that I have him only as my best friends because I commit myself to it. I devoted my life to it. So, I am proudly recognizing myself as his best friend. I do have other friends, my lovely officemates. However, I dare not said that I am their best friend because I am certain that I am not. Best friends are those who stay with you in joy and in pain. Best friends support you in any decisions that you made. Best friends be there for you as a shoulder to cry on, as somebody next to you when you needed companion most. Even with great indulgence, I just couldn’t bring myself to that term with my current friends, even if I want to, because I just knew that I can’t commit to it. I can’t give, so, I do not have the rights to want it.

Therefore, I can only now afford to commit to a best friend, my husband. I guessed most wife have the same feelings, the same understanding, the husband is the best friends, no secrets in the closet, transparent 100%. But what if, your husband did not consider you as best friend. What if he has this sort of thinking, not everything you can tell to a woman. Or, woman no need to know everything, the less they knew, the better. As long as they knew you love them, that’s it, no 100% disclosure is necessary.

To me, even though I am my husband best friend, I committed to that terms, I knew that I can’t force him to take me as his best friend and hence, treated me as a best friend. He is another individual that has his own way of thinking, has his own values, has his own paradigm. So, he is fully capable of deciding who is his best friend. Best friend share everything, no secrets, you are able to speak your mind and knowing that the other person will have the right words to say to you. Of course being a wife may entitle you to ask where he has been to, with whom he spent his time with. But being a best friend, will entitle you to be told without asking.

I am a wife. But I don’t want to be only wife, I want to be a best friend to my husband. I don’t want to ask, I want to be told or everything and anything. Yes, giving this commitment and hopes, if I am still not a best friend to my husband, and still, if he keeps secrets in his closet, I would be sad, of course... but I wouldn’t blame him. For I knew it took a great deal of trust to be telling a person about everything underneath your skin.

Therefore, I will not force, but I will inspire...I will be a best friend without asking anything in return...

Lucky I'm in love with my best friend....

Tuesday, November 15, 2011

The Shoe Shop

Today is a life-changing-experience day for me, for Adibah. We went to St Nicholas Home for a play day. The play day was held twice a month. During Miss Thelma’s last visit to our home, she had insisted that we join the play day. So, today, we were there. I was a little bit hesitating of the needs of this trip, however, looking at the sincerity shown by Miss Thelma, I just cannot resist. And I am so glad that I came. Nothing much is able to be done by Adibah during this play day as she was a little difficult for them to handle, and as for Adibah, knowing that it’s a new environment, she’s a little reserved and sleepy of course. At the end of the session, she was crying. Once I put her in the car, she was smiling back again. Hmmm…..she really knew her environment...the car is a normal environment and the play day session is a weird environment. She just knew it....

Earlier, on Sunday, Adibah is having her usual occupational therapy session. And I was again asking for the phone number of the shoe maker. I was asking because, Miss Thelma suggested that we made a shoes for Adibah. This is not the first time, I received such suggestion. However, I don’t know why, I just did not go to the shoe shop. I just don’t. And in addition to this, I was informed that the shop was at Butterworth. This untrue-fact, had caused me stop thinking of making shoes for her because I just don’t know much about Butterworth, so how am I going to find a small shoe shop...this is all excuses for not making Adibah a shoes....

And on Sunday, once I received the phone number together with the address....I just hahhhh....the shop is located at Seberang Jaya….so, there is no reason for not going there. After St Nicholas, we dropped by at the shoe shop. And this is where I had learned a so important knowledge on how to get Adibah on her feet. It is not a normal shoe shop visit....

The shoe shop is very small. We missed it. The owner of the shop asked “Kereta kaler apa? Saya tunggu kat luar...” Luckily, he really wait outside, it is just a small shop that was hidden by a few bigger shops. If he did not wait outside the shop, I certainly will miss it again and again.

Once we arrived, I saw the owner, something is wrong with his leg. From one glance, you could have noticed that something is wrong. He then, checked on Adibah’s leg....

”Hmmmm....ni tak buat exercise nih..., “ he commented.

I came in defense....”Buat jugak…..”

He replied, “ Jugak jer tak boleh...mesti buat tiap-tiap hari, tak boleh miss....exercise ja yang boleh tolong dia....saya tau, pasai saya dulu pun, tak leh jalan, setahun saya tak leh jalan, pi urut merata kat Utara ni tapi tak boleh jugak...exercise ja yang boleh tolong saya sampai saya boleh jalan la ni...”

He then teached me a method on how to exercise with Adibah. I’ve learnt the method before but I don’t know the importance of it and why I must consistently doing it. The shoe shop owner, explained it all to me...It is very true, that those who explained with experience will be giving a much greater impact compared to those who explained with just theories...He said to me that I should have come earlier. If I had performed the exercise with Adibah earlier and had her shoes made earlier, she could have walk already...Hahh....I felt so guilty to Adibah. It is my fault that she had not walk till today. It is all my fault...

Hence today, I can’t escape the feeling of guilty, melancholy...Felt like I am the saboteur of the life of my own daughter... And the fact that I have been such a lousy, bad mother. I am so positive at everything else but when it came to Adibah, I am negative? Why? Why can’t I perform well, excellent as her mother. Why I chose not to have high hope on her and instead of giving her my very best, I chose to just go with the flow. Why did I choose to give up on her?

Arghhhhh....I am so angry and ashamed with myself. Whether I like it not, I have to accept that I have done an unacceptable injustice to my own daughter. I am the one to be blame....

Therefore, I have to be responsible for what that I have done. Luckily Adibah did not know how to complaint. Or else she might issue me a lawsuit :(

Adibah....

I am so sorry…..Please accept my apology for not being a good mother, for not trusting you, for not having high faith in you, for giving up on you. I said I love you but my actions did not synchronize with my words. For that, for all, for this mihsbehave....I am so sorry and I will try my very best to make it up with you...

And to the shoe shop owner.....thank you very much for enlighten me of my duty and responsibility....

Wednesday, October 19, 2011

Pimpinlah aku ke syurga

Suamiku
Telah lebih sedekad mencintaimu
Jarak masa kadangkala mengelirukan aku
Adakah aku masih yang kau cinta dulu?

Suamiku
Selama menempuhi jarak waktu itu
Bagaimana prestasiku?
Adakah aku menyenangkan hatimu?
Adakah aku membuatkan kau tersenyum?
Adakah menyentuhku membahagiakanmu?

Suamiku
Aku hanya manusia biasa
Sepertimu, aku juga mendambakan syurga
Namun pasti tiada redha Tuhanku tanpa redhamu

Dengan itu suamiku
Tatkala aku lalai dalam tanggungjawabku sebagai isterimu
Ketika kadangkala aku terlalu meminta-minta akan nikmat dunia
Menagih selalu kata-kata cinta darimu
Merayu-rayu lebih banyak masamu untukku

Maafkanlah aku
Aku cuma isteri alaf ini
Yang mudah hanyut dalam menongkah arus dunia
Namun tetap mendambakan syurga serta segala nikmatnya
Maka aku merayu suamiku
Jangan lepaskan tangan ku walau apa jua yang berlaku
Dan jangan jemu memimpinku......


AYu

Thursday, October 6, 2011

Worries....

Do you have worries? I have so many worries….

Last week, my darling baby was sick. I was so worried….. if she was sick because it’s time for her to return back to the Creator. I was so worried even though I am so aware that this is beyond my control.

When I drive, I am worried that I may get involve in an accident and return back to the Creator. Will I be able to answer all the questions in the next life? Will I be bringing a lot of good deeds with me or I shall be bringing with me all the sins and wrong doings? Will I be proud to tell the Creator of what I have done with all the gifts, the life, the age that He had given me. Or will I be so ashamed of my own self for there is nothing good that I’ve done with my life other than wasting it for the world that I am certainly knew is only a short, tiny journey of life.

When I heard of friends diagnosed with cancer, I was worried that what if, I shall be tested with the same disease. Will my loved one be able to take care of me? Will he be there for me? Will my family be strong to hold my hand along the way? Will I be strong to face it?

I am worried of losing too. If I lost my loved one, will I be able to stand and continue living. Will I be able to cope with life without them? What will I do if I miss them? To whom shall I seek should I need love and support? Will I be able to accept the fate? That all is given to us is a loan from the Creator and that only He has the rights to retrieve it back anytime He wants. Everything that is given to you…. money, wealth, health, children, happiness….is all His…..So, He certainly has the right to take it back without prior notice…..will I survive the test of lost?

And when I’ve seen a perfect couple, a couple that have gone through 15 years of marriage life, filing a divorce, I am worried too. Will I be able to always lead a happy, meaningful marriage life? What if my loved one found someone new and so fond of her and forgets all about me. Forget of all the years that we’ve spend together. Forget that we’ve been in love? Will love always be there for me? Will he always love me? If it happens, how will my heart cope with the pain? Will my heart be broken into pieces and will it ever cure again?

Hah…..I have tonne of worries……but I have cure for all my worries….
Syukur….

To the Creator, we shall come back. For all my worries, for all my hopes, for all my dreams, I shall seek and lean to the Creator. For we need to have high faith that Allah SWT decides what’s best for us. Life is difficult, hence, I am so glad, so grateful, felt so blessed for I knew I certainly have a best place to turn to……

Daripada Abu ai-Abbas, Abdullah bin Abbas r.a., beliau berkata, “Suatu hari saya berada di belakang Nabi S.a.w., lalu baginda bersabda, “Wahai anakanda, aku akan mengajarkan kepadamu beberapa perkara: Jagalah Allah, nescaya Dia akan mengjagamu. Jagalah Allah, nescaya Dia akan selalu berada di hadapanmu. Jika kamu meminta, mintalah kepada Allah, jika kamu memohon pertolongan, mohonlah pertolongan kepada Allah. Ketahuilah, sesungguhnya andaikata sekelompok orang bersatu untuk mendatangkan sesuatu manfaat kepadamu, mereka tidak akan dapat memberikan manfaat sedikit pun kecuali apa yang telah Allah tetapkan bagimu. Dan andaikata mereka bersatu untuk mendatangkan sesuatu yang memudharatkanmu, nescaya mereka tidak akan memudharatkanmu kecuali musibah yang memang telah Allah tetapkan bagimu. Pena telah diangkat dan lembaran telah kering.” (HR. Tirmizi, dia berkata, “Hadis ini hasan Sahih”).

Dalam sebuah riwayat selain Tirmizi dikatakan, “Jagalah Allah, nescaya engkau akan mendapatkan-Nya di hadapanmu. Kenalilah Allah di waktu senang, nescaya Dia akan mengenalmu di waktu musibah. Ketahuilah bahawa apa yang ditetapkan luput darimu, tidaklah akan menimpamu, Dan apa yang ditetapkan akan menimpamu, tidak akan luput darimu. Ketahuilah bahawa kemenangan itu bersama kesabaran, dan kemudahan itu bersama kesulitan, dan bersama kesulitan ada kemudahan.