Utusan Online - Mingguan Malaysia

ARKIB : 22/11/2009
Nabila mutiara hatiku - Hjh Rohana Abdul Razak

Oleh RABIATUL ADAWIYAH KOH ABDULLAH ( )
adawiyah.koh@utusan.com.my


BERAT mata memandang, berat lagi bahu memikul, setiap kejadian Allah bersebab, saya reda apa yang berlaku," itulah kata seorang ibu, Hjh Rohana Abdul Razak membesarkan anaknya yang bukan sahaja menghidap sindrom down malah disahkan menderita Atrioventricular Septal Defect (AVSD) iaitu penyakit jantung kongenital kompleks dan beberapa komplikasi yang lain.

Seperti satu keajaiban, Hjh Rohana  berjaya mendidik anaknya, Nabila Abd Raes seperti kanak-kanak normal lain. Kesempatan menjamu selera bersama Nabila mengubah persepsi tentang golongan sindrom down. Seperti kanak-kanak normal lain, dia mampu makan dengan tertib. Percakapan dan tingkah lakunya juga sopan dan berbudi bahasa. Terdetik di hati, ini mungkin keajaiban Tuhan. Pengorbanan Hjh Rohana membesarkan anaknya, Nabila tidak ternilai. Kekuatan ini perlu menjadi contoh kepada masyarakat. Yang pasti Hjh Rohana  tidak pernah menyisihkan anaknya Nabila, ke mana sahaja Hjh Rohana pergi Nabila akan dibawanya bersama. Pada 27 Mac yang lalu, Nabila telah selamat dibedah dan pembetulan kepada setiap lubang dan injapnya telah di baik pulih oleh pakar Institut Jantung Negara (IJN).

"Apa yang mampu saya lakukan ialah reda dan supaya Allah memberikan saya kekuatan melalui detik cemas dengan tabah. Di dalam minda saya, saya gambarkan keindahan yang akan saya lalui bersama Nabila dan keluarga saya yang lain. Kini, saya seronok melihat dia bermain solekan sendiri, mewarna dan kadang kala menyanyi dengan bahasanya tersendiri," katanya.

Buat masa ini, Hjh Rohana berfikir untuk memberi latihan vokasional, mungkin Nabila boleh mengambil bidang kecantikan. Siapa tahu Nabila boleh menjadi anak sindrom down yang pertama di bidang kemahiran kecantikan. 

"Kehadiran Nabila memberikan saya satu kekuatan untuk sabar, bersikap terbuka, berfikiran positif dan yakin diri, kehadiran Nabila anak istimewa yang teristimewa. Dia ialah mutiara hatiku," bicaranya dalam keadaan sebak.

Mengimbas kisah 13 tahun lalu, dua minggu sebelum Nabila lahir, Hjh Rohana sudah dimaklumkan tentang keadaan anaknya.

Ketika itu, dia berazam ingin menjadikan anaknya paling istimewa. Risau dan bimbang keadaan anaknya pada masa depan, membuatkan Nabila menangis.

"Pada hari kedua dilahirkan, Nabila dipindahkan ke Pusat Perubatan Universiti Malaya untuk menjalani pembedahan kolostomi ke atas ususnya.

Tiga minggu selepas pembedahan membentuk lubang pembuangan najis, saya diberitahu oleh doktor bahawa Nabila turut menghidap penyakit jantung kongenital atau jantung berlubang. Setelah berusaha, kami berjaya mendapatkan khidmat kepakarannya. Kemudian, Nabila mula menjalani siri pembedahan jantung seawal usianya tujuh bulan lagi," katanya.

Dugaan ini tidak pernah mematahkan semangat Hjh Rohana sekeluarga. Melihat Nabila yang berjuang untuk terus hidup, Hjh Rohana kuatkan semangat.

Berkongsi teladan dengan pembaca, Hjh Rohana berpendapat setiap ibu bapa perlu diberi didikan untuk menjaga anak sindrom down.

"Dulu, saya panik ketika kuku Nabila yang masih bayi menjadi kebiruan secara tiba-tiba. Mungkin saya bernasib baik kerana tahu menggunakan internet. Saya mula mendapatkan maklumat tentang sindrom down melalui internet. Tetapi bagaimana dengan mereka yang tiada asas internet? Saya harap dengan adanya perkongsian kisah saya dan Nabila dapat membantu masyarakat di luar sana," ujarnya yang banyak menerima sokongan daripada keluarga.

Tambahnya, pengetahuan tentang anak abnormal perlu didedahkan ketika mengandung lagi dan sebelum melahirkan anak.

Setiap keluarga jangan menyerah kepada takdir tetapi perlu bertindak untuk berdepan dengan keadaan ini.

"Sebelum pembedahan jantungnya, selama 12 tahun Nabila tidak fokus pada pembelajaran. Tetapi saya tidak lupa mengajarnya tentang latihan asasi seperti makan dan penggunaan tandas. Maklumat itu saya perolehi daripada internet. Bagi suri rumah tangga, kumpulan sokongan sangat penting. Melalui persatuan, ceramah, dan bengkel, mereka akan mendapat maklumat. Siapa kata anak sindrom down sukar dibentuk? Semuanya perlu usaha ibu dan bapa itu sendiri," ujarnya.

Atas kesedaran membantu masyarakat, Hjh Rohana dan suami menubuhkan syarikat BNR Global untuk memberi bimbingan melalui kumpulan-kumpulan sokongan.

"Ramai ibu-ibu tidak arif tentang menjaga anak kurang upaya dan banyak maklumat tidak fokus kepentingan anak-anak. Misalnya, di Urban Ethos Consultancy membantu peningkatan pembelajaran Nabila seperti pertuturan. Selain bersekolah di kelas pendidikan khas di Sekolah Kebangsaan Seksyen 20, Shah Alam, Nabila kini boleh memperbaiki kemahiran yang dia ada," katanya. Sementara itu, Hjh Rohana mengalu-alukan orang ramai membantu Yayasan Institut Jantung Negara (IJN) dengan menghubungi talian 03-26006219 . Bagi mereka yang berminat untuk menyertai seminar BNR Global bolehlah menghubungi Hjh Rohana di bnrglobal@gmail.com

Give Me A Chance in the aid of IJN Foundation organised by BNR Global

IJN Foundation believe in a continuous effort of fund raising and creating awareness :- 1. To raise funds in aid of poor and needy pediatric heart patients in meeting the costs of heart operations. 2. To raise awareness in the community of the various related aspects of pediatric heart patients care. 3. To create sharing and caring attitudes among the community for the pediatric (children and babies) poor and needy heart patients of IJN. Give Me A Chance” aim to create an awareness especially to public, parents to be and parents with :- * Infant and children that was born with a down’s syndrome disabilities that usually diagnosed with a complexity of congenital heart disease in several stages. * Infant and children that was diagnosed with a complexity of congenital heart disease but come from a very poor family background. “GIVE ME A CHANCE” FUNDRAISING SEMINAR in aid of IJN Foundation DATE : 7th November 2009 (Saturday) TIME : 9.00am – 4.30pm VENUE : IJN Auditorium, 145 Jalan Tun Razak, 50400 Kuala Lumpur TARGETTED AUDIENCE : * Parents * Teachers/Educators * Hospital Administrators * Down Syndrome Associations PARTICIPATION FEE : RM120 per participant 10% discount for IJN Foundation members RM100 for group of 5 and above RM100 for Early Bird – on or before 15 October 2009 PROGRAMME 8.30am – 9.00am : Registration of Participants & Refreshments 9.00am – 9.30am : Heart Disease Among Children Dr Nomee Mohd Radzi Consultant Paediatric Cardiologist Institut Jantung Negara 9.30am – 10.00am : Opening Ceremony YABhg Toh Puan Dato’ Seri Dr Hajjah Aishah Ong Chairman IJN Foundation 10.00am – 10.30am : “A Mother’s Sharing” Hajjah Rohana  binti Hj Abdul Razak 10.30am – 11.30am : “I am a Special Child” Dr. Fauzi Ismail Paediatric Psychiatrist Hospital Kuala Lumpur 11.30am – 12.15pm : “Development & Care for Special Child – Achieving a Child’s Potential” Dr. Norizan binti Razak, PhD Director & Consulting Linguist - Urbane Ethos Consultancy Group 12.15pm – 2.00pm : LUNCH 2.00pm – 2.15pm : Special Performance by Children 2.15pm – 3.00pm : Junior eXtraDICTION® Demonstration Facilitator – Encik Soh Wee Hock Chief Designer and Dreamer of Ed-Infinitum (M) Sdn Bhd 3.00pm – 4.00pm : Cane Rejuvenation Exercise Programme Facilitators – Encik Yong Yew Tuck & Dato’ Yee Weng Loon 4.00pm – 5.00pm : TEA & END OF PROGRAMME

Hari Raya Celebration with a new heart

It is indeed a special hari raya for the whole family...thanks to the almighty...to give us the moment to celebrate 2009 hari raya in allowing us to see Nabila in her joyous Eid Mubarak with a healthy and a corrective done to her heart. For me its the greatness gift from allah swt...amin.

Nabila's Diaries - Allah blessed her......

How should I start, it took me four months to update this moment, it was kind of traumatic moment for me...but I will keep it posted for others to read....Hope IJN don't mind I shared this pictures of Nabila, reason being at least I create some awareness. Nabila was addmitted on the 23rd March 2009 at 2.00 pm at Institut Jantung Negara.




As usual she looks like she is going for a relaxing hotel stay...although I kept her informed that she will have an open heart surgery "Mama nak Nabila sihat...tak biru-biru, Nabila kena kuat, doktor belah kat sini...sakit sikit je...Nabila nak sihat kan" means mama wants you to be healthy and strong, the doctor will do it here by showing exactly where the scare will be, just a slight pain, you want to be healthy aren't you she will then repeat "sakit sikit je" means very slight pain, each time she says that I will hug her, trying my level best and hold back my tears....I kept on repeating the lines everyday....and keep saying it will be alright....



Good about IJN or maybe thats the normal way to have an induction program for every heart patient that will go for surgery...what do and don't before and after each operation...

In this pictures she was browsing the IJN pamphlet....she acted as though she can read that's her she will show her interest in reading and viewing.....



Look at her I believe if she is normal, she will be an intelligent girl,but she is in her own intelligency, never she will make herself wasting time....you can see books, drawing and coloring block will always with her....



This picture was taken on the 25th March 2009,the nurses pushed nabila to the CC theater, the day that a cardiac cath was done...Cardiac catheterization (heart cath) is the insertion of a catheter into a chamber or vessel of the heart. This is done for both investigational and interventional purposes. http://en.wikipedia.org/wiki/Cardiac_catheterization.

Alhamdulillah everything when well, after the CC I was called and the MO told me that they might do the operation on Thursday, 26th March 2009 instead Friday, 27th March 2009....and Nabila was asked to start fasting from midnight onwards, well I felt a little confused and scared....in my tahajud that night I told allah "oh allah I whisper in my heart "give the best and bless her, you have given me the chance for almost 13 years to look, love and care for her....and now I am returning it to you allah...you know what best for her...as a care taker and guardian to her I "redha"....I was crying my heart out...my positive thinking says that I need to be strong and I have gone this far...this is the choice that I have choose, in spite of many objection and ideas...for me no turning back...no regret....thanks to allah for the moment....At about 2pm on Thursday, the MO came and told me they cannot proceed because there's a delay from the first case....kinda relieved as I am a bit scared, my thinking does not telly with my intuition when they said that they wanted to do on Thursday, I am more comfortable if they want it to be done on Friday...that the strong feeling I had at that time....



27th March 2009, it was a Friday....a day of a "penghulu hari" a day start for a muslim week...as early as 6am I have woke her up...its a third day I have to gave her an antiseptic bath...when I reaches her chest I will remind her "doktor akan buat kat sini...nabilah tak perlu risau sakit sikit je...doktor bagi ubat..." means "the doctor will do it here and don't be afraid, its a slight pain and they will gave you medication" I cannot hide my sorrow I broke down and quickly hug her and usually she did not cry but that morning she cried, she cried and the words that came out from her was "mama maaf" means "forgive me mama"....how could I hold back my tears....I have been hiding it all this while but that morning it was the most difficult moment for a person by the name of "mama" to handle...nine months I conceived her and nearly thirteen years she is always by her side...make a choice to leave the job I love...its always a choice for a mother to do.....

Another test when she refused to cooperate to be transferred to the stretcher when the staff are ready to push her to the OT, she told me "Benci Mama" I hate you was a traumatized moment in my life, after kisses her, I adjourned myself without any of my immediate family notice, I cried at the staircase....she would not understand and I know that's her expression to say why you make me suffers, I could be wrong but alhamdulillah I know that's not what she wants to said or may be not but at least I managed to tell how I love here, no mother would ever want to make her children suffers....for me its a test that I really valued every moment in bringing her up.

A moment that I will never forget...after eight hours in the operation theater...exactly at about 5pm, I was told that the operation was successful done and she was transferred to the Intensive Care Unit....what a relieved and my "syukur, alhamdulillah" to Allah, I was with Mak Su my husband's auntie from Pulau Pinang at the ICU waiting lobby...My husband has to sent two of my eldest daughter back to UIA Gombak,that means I'm alone without my husband and other children...suddenly the ICU head of security called "Keluarga untuk Nabila Abdul Raes sila masuk ke ICU, pakar sedang menunggu" - the family of Nabila please come in the surgeon is waiting...

At that time suddenly I can't hardly stand, I felt shortness of breath...luckily Mak Su told me to be more calm...think of Allah...well I remembered how I walked very slow just to regained my strength...

When I saw her, I do not know what to do, whether I should cry...but I managed to make myself calm and yet I can sense that my mind and soul are in the air.... Mr Ahmad Khadri that assisted Mr KK Pau was there, he started to explained about what they had done to Nabila's heart...honest I can't even focused to what he said...


Four and a half days she was in the ICU, with many doa from us and others, with the supports from my immediate family, siblings, in laws and friends and not forgetting Ms Evelyn Ch'ng and her brother-in-law, Dato Yee who actually have sacrifices her time to come just to do healing for her. For me besides having my faith to Allah, I will never gave up hope to find other alternatives for Nabila for the benefits of her well being.





To see her open her eyes and to see one by one of those massive gadgets on her been removed, I am more relief....Thanks to Allah....Syukur.

What I gather from here, all the test that Allah showers us, is to make us a very strong person and value things that we have in front of us....Nabila herself is a fighter...She herself have her own strong will power...well its not easy for me thou to balance up myself with her moods, she have all sorts of deals and temper that really at times make me get confused what to do, here I will like to conveyed my sincere thanks to all her siblings who take turns to look after here during her stays in IJN.

My "sujud syukur" to Allah,as I believed every test or joy that Allah showers me, is an indication that Allah actually is so near to us and from this test makes us the family more closer to each other.....

NABILA you are always our precious pearl.....

My sincere gratitude to the almighty and to all......

It has been quite a while I have not been blogging any feedback about my precious pearl....today is exactly a month after Nabila has undergone her open heart surgery ...simply because before the op the whole family especially me need to foresee a lot of preparation...

Prof. Dr Asma Omar, Paeds Specialist Cardiologist from University of Malaya Medical Centre, UMMC. a lady with a strong character but kind at heart. Twice she told me not much can be done for Nabila....Nabila has been her patient since 2nd day of birth till todate, close to 13 years now....after doing my own findings and without losing hope to see Nabila gets her corrective I went to see her again in June 2008, after a year lapse without doing anything, just witness Nabila goes on getting weaker and weaker, deep inside me was to see her get her strength like any normal child. I believe if we have faith Allah will lead us the way.....it just happen at the right moment Prof. referred Nabila's case to IJN.....and this picture was taken when Nabila had her 1st check up on the 4th June 2009 with Prof. Dr Asma, two months after her Open Heart operations. What else can i say to this lady, through Allah wills this lady have extended her truely and sincere heart to help Nabila....thank you prof. for making all the arrangement for Nabila. Thank you and may allah bless you.



This pictures was taken with the IJN Specialist Heart surgeon Mr KK Pau, Dr Rohana a HO/MO, Dr Rohana from Ipoh Hospital, Wad Mawar Nursing Manager and a staff nurse....two weeks after her major operations....nabila are able to move around......



In this picture Nabila with Mr Ahmad Khadri, the day he dropped by to see Nabila, is the day that he joined a new team...He was the one who have given us the full explaination process and the consequences that will happen during the operation, he is the 2nd surgeon assisting Mr KK Pau. Im glad he is one of them during the whole process going on....a stupid thing that I remembered telling him "Doctor please recite quranic verses when you want to do it to Nabila"....he replied "insyaallah puan, I will and thats what I always do... and thats the moment I can't control or hold back my tears"

The only picture that I have not able to take is with Dr Haifa, IJN Paeds Cardiologist, cute and pretty lady. I will get it taken later.

My sincere thanks to all of you IJN team and wad staff....(I will continue later).

HAPPY BIRTHDAY TO MS EVELYN CH'NG

TO SOMEONE WHO HAVE WORKED AN EXTRA-MILES FOR THE NEEDS OF OTHERS - THANK YOU!





Dear Ms Evelyn Ch'ng happy birthday to you from All of us "Anna Raes" Family especially from Nabila....I believed you felt so touched when she wished you that morning right...she was so excited to pass you the card....all the way to Klang she kept on asking me to sing a birthday songs...thank you again....may you be blessed always.....


AGE IS JUST A NUMBER

Nabila's Diaries

I created many event just for her....I need to balance and take things one at a time. In fact every end of each day, I will ensure to plan what next and next...I wanted to gave her the best and not forgetting to keep my faith to Allah.






I am careful in planning for her, planning for her means I also have to take care of my health....March 27th, 2009 needs everyone at home to be strong and healthy,at times I neglected them and make sure Nabila gets all the care and love...to my other children...sorry dear I just cannot cope...and yet I still want everyone to be happy...Most of the time I did my own healing conversation just focus and look forward....and even making the networking going....to ensure doa and prayers are being extended for Nabila's well being.




My sincere thanks to IDC/Ms Helen Sheibt and staff, Ms Evelyn Ch'ng for a well planned seminar.

My heartiest gratitude to Sekolah Rendah Seksyen 20, Shah Alam where Nabila attended her special education for almost 7 years, to the parents and teachers group, the headmistress, Puan Hjh Norsima Saari, all teachers especially the PPKI teachers and student for their kind effort doa and token given to Nabila's operations. May Allah bless all of you.



Thank you to Hjh Nasiyah, founder and a care taker of Rumah Qiraati, Taman Melawati in organising a "Khatam Quran and a special event of Doa Selamat for Nabila" at KTSN Global, Taman Melawati and thanks to Hjh Kiah for a lovely place extended for this function.

To Ms Evelyn for arranging a three days healing session for Nabila when the Taiwan healing group came to Malaysia. For those who wonder what treatment is this, according to David Herron "Healing is not the popular conception of removal of symptoms. Healing is to recover a greater experience of unity with the divine harmony, and our true selves. Healing is returning to a state of alignment with your Higher Self or true way of being". It is a western medical science that has made Healing be thought of as the removal of symptoms".




Nabila has received the treatment since November 2008, and thank you to Dato Yee, Ms Evelyn's brother in law for his time coming to the house and did the healing for Nabila.

For Nabila she seems to enjoy every moment that I schedule for her.....

Nabila Dairies

Last Monday 16th Febuary 2009 was Nabila's follow-up dental check-up at UMMC....she had her dental orientation tour....



As usual she seems to be very cooperative...thank you to the staff nurse who actually able to make her listen and focus.....


Nabila if you ever have a bad tooth dear....there will no more teeth for you sayang....or else mama have to get you a false teeth hehe....

Caring and Sharing "Save Adik Nabila/PDK Mutiara Hati Ku" charity Talk

Together We Can Make A Difference - 17th January 2009 (Wisma MCA, Jalan Ampang, KL)

First it was an idea that came from Ms Evelyn EL Ch'ng, JP and then the assistance and caring heart of Ms Helen Sheibt the General Director of SMI (M) Sdn Bhd to organised a one-day seminar "Creating Values In Your Child - Every Parent's Obligation" and without disregard of the race, gender, culture or any aspects Ms. Seibt believes her own affirmation in life and to others as "If you want RAINBOW, you got to put up the RAIN, To get what you never had, you must do what you have never done". Amongst the guest speakers who were present and contributed their time and effort for the charity seminar was :-
* AP Dr Rogayah A Razak - University Kebangsaan Malaysia (as the
master of ceremony of the day)
* Dr Norizan Razak (PhD) - Director, Urban Ethos Consultancy Group
* Ms Evelyn EL Ch’ng (PJK, JP) - Managing Director, C&P Ventures Sdn Bhd
* Hjh Bedah Razak - Nabila’s mother
* Mr Howard Khoo - Group CEO, Hing Yiap Knitting Ind. Bhd
* Ms Helen Seibt - Founder of IDC Group of Companies
(Hope to put their photos soon)
IZ (Ezuan Sulaini) a finalist from the reality show One In A Million made a special appearance and performance to entertain guests, it was truly touching to see Nabila inviting everyone to stand and clap their hands to IZ’s song entitled “Gonna Be Alright”

A famous dramatist/comedian Ms Angeline Tan also made a special appearance on stage interacting with IZ, who later invited Moe Nasrullah from Fly FM on stage.

To all whom have made it happened and attended the seminar especially Ms Evelyn EL Ch'ng, Ms Helen Sheibt and IDC Staff, Mr Howard Khoo, AP Dr Rogayah, Dr Norizan, Ms Angeline Tan, IZ Sulaini and Moe Nasrullah, members of the public, my family members (my siblings and in laws), Dato Ch'ng families, my ex-boss from ex-MAS Puan Noraishah Hashim, Biz Tag Group from Tagged "Virtual became reality)Puan Dib, Cik Ainee and Cik Aza, Ms Penny (Napoleon Hill, Malaysia and Help University faculty of Psychology.

My sincere gratitude to the almighty and thanks to all for the support in terms of donations and prayers (doa). Thank you and may god bless all of you with more abundance.



(Picture imported from Mossovi Model)

Nabila Diaries - Outing 1st Feb. before her pre dental op and during her admission for the op 4thfeb-7thfeb 2009.....she's a strong girl...

A day out with her, and make her enjoys her favourite "chicken rice" at the food court in Section 13, Giant and window shopping at JJ, Bukit Raja is always her best choice...she likes window shopping, she will never demand for things but enjoys her outings....



unless she really craze about certain...she love coloring and not forgetting musics....will never miss to go to her favourite bookstore MPH and Popular's...



When I specify to all my children about window shopping, they knew there will be no purchase accept to have our quick "makan" at the food court. For nabila she will also abide with that rules....thats what i have trained them....buy when it is necessary...



At the end of each outing....she will still searching for a place to have her last bite...thats my nabila she will felt in-complete day without filling her tummy....for me to make her happy..to let and see her doing what she likes to do and to make her enjoys what the norm would do that is the most satisfying moment I would like her to have....patience in handling her its what the whole family will give....her siblings will never make her angry but always there to tolerates whats she wants...but definitely I am the one who have to control her, tell her how she should behave and how should she react....having her is the most precious moment that I will treasure.



I keep on repeating this....Never I regret having her in my life....I have learned a lot since the almighty entrusted Nabila in my care. I always visualize her having a normal life inspite having her own disabilities. The whole family, my hub and me and her siblings never put her aside in any of our outing and activities if possible we want her to be with us, unless she shows that she is not fit to come along....

This is a little secret why I want Nabila to be very independent and it could be a lesson to those mother whom have the same problem as I am, when Allah have choosen us to have this special bundle...in every way as a mother we should have to accept the fact that Allah wants us to take over his duty to look after our child...for me accepting her in the first place is not as easy thing to do...cursing and questioning is a normal scenario for any mom, than one day I asked myself if it is not ME who have to accept her who else....from there I put the fullest effort, read books, journals and internets, blogs and communicate with community all over the world....believe me I did not even join any of the association as I believe the only one who deserve to teach Nabila no other person only ME.



...that is my definite chief aim in making everything when smoothly in my daily process in seeing things falls at its own place....and now I am more proud to myself and love to share...I managed to tell my other children...what I have done for Nabila, taught her to be very independent and one day they cannot claim that Nabila will be a burden to them.....Nabila can take care of herself thou is not so perfect but at least she can handle mostly basic things herself....



I told my children no one can ever send her to the care of a welfare home if happen Allah take me first....I hope my other children gets my message clear.....I may sound demanding but I wish to let the norm and even people out there who happen to have special needs child and handicaps they still have their own needs....be more concern and care for them....for parents who have special needs children change your mindset....at one time I was harshly reminded by certain parents at one group meeting that I cannot take my Nabila experience and make other parents follow my techniques...I do agree we might not have the same problem but be more proactive with the needs and train our own special children the right way, never let go and aspect and demand the school, teachers and care taker to do for you....because at the end of the day YOU/ME is the one to handle the end process....this is very much neglected, may be no awareness....and even awareness from the public...special children and handicaps are not aliens and something so call a disease....at one occasion at a shopping mall, this mother pull away her son not to get near Nabila...for me as a straight person " I give a piece to this mother by saying this - You are very lucky to have a bundle that Allah have given you a perfect child...but at least I am more luckier to have my own since birth...but what will happen to you when you have a perfect normal child and suddenly Allah tested you - your son become handicap in a second due to a accident and sickness....well enough she show her madness to me but at least I have my piece to this people who is lack of awareness......gosh after that I told myself I need to do something.....and I am still thinking....



UMMC/UH here Nabila comes....4th Feb 2009, after all necessary admission done, Nabila have to do all the necessary procedures...she was asked by the Medical Officer to have her ECG and ECHO done, for Nabila I gather is just a norm check-up...I have been telling her for about a week, that she will be admitted to do her pre-dental op, that is the way how I have been using, continuous alerting, not only to her but also for her other siblings when they are a child....I believe in telling something or teach something we have to do it repeatable - to make things easy to understand. Now I'm preparing to tell her that she will have to undergo a major operations in March in IJN....to tell the truth when she sees logo of IJN, she will tell me "Jantung" means heart....



Look how relaxs she was, she have left her phobia and trauma long time ago, for her there is nothing to be afraid off and make her enjoy her journey in doing the routine procedures,that is what some of the medical student and HO commented...she is very cooperative and very alert on every instruction....alhamdulilah..


How she spent her day in the ward....she will not move around and disturb other patients, she will stay put as I told her not to move around and be at her bed....to make her not feeling bored, I always brought along her coloring gadget....she just do that and will just smile and wave her hand to other patients from where she is....

I told allah how thankful I am to have her, thou at times we do fight hehe when suddenly I make myself quiet she herself will say sorry and try to win my heart...at times she as ever became bossy...order me to do this and that....but I purposely ignore her and she understands that I am upset, she then will starts to hug me and kiss me....well at times it is not an easy thing to handle her....i will avoid making her angry, once I do she will never cooperate with me and starts saying she do not love me....she loves "babah" her father, who says this kind of child do not have feelings....patience...I learned a lot from her....





Without failed she will keep on asking me where is her father and siblings especially her little sister Nayli....Nayli used to bully her but one thing for sure her love for her sister is huge...will just cry silently...if Nayli took her things..


Amongst the siblings Nadia is the most she adores, once she saw Nadia, huhu mama becomes secondary...Nadia understands her well...Nadia is still studying in one of the local university in her 3rd year, one day Nadia told me if she ever have a chance to further her study abroad she wants to bring Nabila, well for me ever its a choice....she wants Nabila to feel the home of a special needs educations abroad....I agreed with her the special needs children gets the best attention and the way the people treats the special children very different to some here.

To make her forget her siblings and father, I will keep her busy with her coloring, it is a different environment now in UMMC(UH), I remembered the old building of paeds 1, 2, 3.... 12 years ago Nabila was warded at Paeds 2, a building for me a bit scary....but now with the new renovation done...with all centralised air-condition, alhamdulilah rather than the ceiling fan those days, syukur with the new look of UMMC and I always like the service randered since Nabila is 2 days old....I as ever will make friends and get to know the prof, doctors and staff....for the sake of Nabila....



6th Feb 2009, Nabila getting ready, to be pushed to the operations theatre....to be honest its sound simple procedure but for Nabila she has to do it thru GA and for a conginental heart disease patients' ever she is at risk....I have sleepless nite ever since I was told that she will have her heart operated. Please read my earlier post.....



I look very calm....but only Allah knows each time I have to face this moment...I look cool but deep in my heart I cried loud to Allah to give me strength to cope with all this. Nabila have gone 8 times of GA's and this coming March her 9th....with her condition...but I am visualizing her sweet smile everytime after each process...amin..





Seeing her been pushed to the Operating Theatre make my heart beats fast, waiting for her to be out from OT is a traumatic moment for me....but never I took it as a burden to me.....I make a promise to myself as long Allah give me my breath I will do anything for the sake of Nabila and my family and not forgetting to give back to the society once everything when well for Nabila.....insyaallah...as through the process I learn a lot of sharing and caring.....




I believe Allah have all for us....we can at one time be rich, be poor, have a wonderful family, have lots and lots of obstacles in our journey of life but each of us will have our own test but how each of us tackle and rectify each of the problem. How we use our accurate thinking to make a good choice, how we use faith and live our life in a way of using tolerance and most and above all always have our love to all and show our care.....




For me I have make a choice since I say I DO....this is the choice that I will carry out towards the end of my journey, to have balance in every situation and keep on learn, unlearn and relearn...take others mistake as an example and never make assumption to the good and the bad I come across....the golden rule is going to be my most and highest principles of my life...



QUOTES - I came across during my four days stay in the hospital....and wish to share with all viewers :

The test and be tested will always make a person strong, in reaching success - You can't win unless you know how to lose - Everything happens for a reason...There will come a time when you believe everything is finished. That will be the beginning....In life "If you have much, give your wealth. If you have little, give your HEART.......

~To my hub, my children our love will always be the beginning with no ends ~ Anna