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
(bekas parut pembedahan demi pembedahan yang diharungi Nabila sejak dia kecil lagi).
BAIT-BAIT lagu Terlalu Istimewa dendangan Adibah Nor yang ditujukan khas kepada golongan kanak-kanak, mengimbau kenangan penulis saat pertemuan dengan seorang insan istimewa baru-baru ini. Ternyata, pertemuan itu telah membuka minda penulis seluas-luasnya tentang kanak-kanak istimewa yang mungkin selama banyak yang terlepas pandang.
Apa yang bakal anda baca selepas ini bukanlah sebuah epilog kisah duka masyarakat yang ingin meraih belas mahupun simpati. Tetapi ia sekadar mahu dijadikan inspirasi kepada ibu bapa di luar sana yang mungkin turut dilanda dilema yang sama.
Tanggal 14 Oktober 1996, sememangnya cukup bermakna kepada pasangan suami isteri, Rohana Abdul Razak Razak dan Abdul Raes Abdul Razak dengan kelahiran cahaya mata kelima yang bakal menyerikan lagi rumah tangga mereka.
Seperti anak-anak lain, bayi yang diberi nama Nabila ditatang dengan penuh kasih sayang, malah perhatian yang diberi melebihi daripada kakak-kakaknya kerana anak ini cukup istimewa.
Pertemuan penulis dengan Nabila dan ibunya di kediaman mereka di Shah Alam, Selangor, baru-baru ini semata-mata untuk berkongsi pengalaman seorang ibu membesarkan anak yang bukan sahaja menghidap sindrom down malah turut disahkan menderita Atrioventricular Septal Defect (AVSD) iaitu penyakit jantung kongenital kompleks.
Mengimbas kembali saat-saat sebelum melahirkan Nabila, pakar ginekologi telah memaklumkan bahawa kandungan Bedah abnormal. Ia berdasarkan kandungan air ketuban yang melebihi jumlah sepatutnya pada saat kandungannya berusia 38 minggu iaitu dua minggu sebelum tarikh kelahiran.
"Apabila doktor memberitahu saya tentang perkara tersebut. (kandungan abnormal) hati saya menafikannya dan memberontak mengatakan bahawa doktor bukan Tuhan untuk menentukan segalanya.
"Tapi pada masa sama, saya meluahkan segalanya pada Allah dan melakukan ibadah seperti solat hajat dan istikharah supaya diberi kekuatan untuk menempuhi dugaan yang mendatang," jelas ibu tabah ini.
Sejak itu juga Rohana mula berubah perwatakan daripada seorang yang ceria dan peramah kepada seorang yang murung dan menyendiri. Malah suaminya turut tidak dimaklumkan tentang keadaan tersebut.
"Sewaktu di pejabat, saya mula hilang minat untuk bersama dengan rakan-rakan menikmati makan tengah hari. Masa rehat saya di pejabat dihabiskan dengan memikirkan apakah yang perlu dilakukan apabila menerima anugerah Tuhan yang istimewa itu kelak," jelas wanita berusia 46 tahun itu.
Sehinggalah tujuh hari sebelum tarikh jangkaan bersalin, Rohana didatangi majikan yang mengambil kesempatan bersembang dengannya pada waktu rehat.
"Entah kenapa, saya boleh duduk bersembang dengannya dan dia bercerita perihal keluarga termasuk cerita abang iparnya yang merupakan seorang pakar bedah kanak-kanak. Tapi pada waktu itu saya hanya mendengar tanpa meluahkan tentang kesusahan hati saya," kata Rohana yang ketika itu bertugas sebagai penyelia di Jabatan Sumber Manusia di sebuah syarikat penerbangan.
Sebagaimana ramalan doktor, bayi yang dilahirkannya mempunyai gejala-gejala sindrom down, tetapi lebih menyedihkan bayi tersebut turut mengalami masalah tiada bukaan lubang manis mengakibatkan perutnya membuncit kerana angin dan najis yang terkumpul di dalam usus.
"Saat itu saya tidak menangis namun terus memikirkan apa yang boleh dilakukan pada bayi yang baru hendak melihat dunia ini. Pada hari kedua dilahirkan, Nabila dipindahkan ke Pusat Perubatan Universiti Malaya untuk menjalani pembedahan colostomy ke atas ususnya," imbas Rohana pada kisah yang berlaku 13 tahun lalu.
Dugaan Rohana tidak terhenti di situ, tiga minggu selepas pembedahan membentuk lubang dubur, dia dikhabarkan lagi oleh doktor bahawa bayi turut menghidap penyakit jantung kongenital atau jantung berlubang. Lebih teruk lubang itu berada di bahagian tengah yang melibatkan semua injap.
"Dalam kebingungan menerima satu demi satu berita buruk, saya teringat pakar bedah kanak-kanak yang disebut oleh bos saya dalam perbualan kami tidak lama dulu.
"Setelah berusaha, kami berjaya mendapatkan khidmat kepakarannya. Dari situ Nabila mula menjalani siri pembedahan jantung seawal usianya tujuh bulan lagi. Kalau nak dikira, sejak lahir hingga sekarang dia sudah lima kali keluar masuk bilik bedah.
"Alhamdulillah, setiap kali pembedahan Nabila pulih dengan cepat dan saya anggap ia seperti satu keajaiban daripada Allah," katanya.
Namun, episod pembedahan Nabila belum berakhir kerana pada 27 Mac ini dia dijadual menjalani satu lagi pembedahan paling penting di mana doktor pakar di Institut Jantung Negara (IJN) akan melakukan pembedahan 'PA Banding' untuk menutup empat lubang di injap jantungnya.
"Pembedahan itu perlu kerana ketika usianya 10 tahun dia mengalami serangan jantung yang pertama. Sejak itu dia tidak boleh terlalu aktif seperti naik turun tangga, susah bernafas dan mulut serta kuku menjadi kebiruan secara tiba-tiba.
Apa yang nyata, dugaan demi dugaan yang melanda sedikit pun tidak melumpuhkan semangat Rohana. Bahkan dia bertekad, selagi mampu, perjuangannya akan tetap diteruskan demi Nabila juga anak-anak yang lain.
Nabila di mata keluarga Rohana mengakui, anak-anak istimewa merupakan anugerah Tuhan yang paling mencabar untuk semua ibu bapa.
"Layanan saya terhadap Nabila tidak pernah berbeza, saya tidak memencilkan dia malah membawa dia ke mana sahaja kami sekeluarga pergi. Nabila juga seorang anak yang bijak kerana boleh mengadaptasi apa yang diajar dengan baik," katanya.
Malah menurut Rohana, Nabila boleh memasak nasi dengan baik dan berkebolehan membancuh teh.
"Nabila memang manja dengan kakak-kakaknya terutama kakak keduanya, Nadia, sehinggakan makan pun bersuap. Selain itu Nabila memang pandai mengambil hati setiap ahli keluarga, pendek kata dia mempunyai perasaan yang peka dan sensitif dengan apa yang berlaku di kalangan ahli keluarga," kata wanita berkulit cerah ini.
Mengakui apa yang dikatakan oleh Rohana, penulis turut kagum dengan aksi spontan Nabila yang bijak mengatur meja untuk hidangan petang bagi tetamu yang datang.
Selain Nadia, 21, Nabila mempunyai tiga lagi kakak, Nadira, 23, Natrah, 19, Nur Diana, 15 dan seorang adik, Nur Naylli, 6.
Nabila yang pandai mewarna dengan baik, kini bersekolah di kelas pendidikan khas di Sekolah Kebangsaan Seksyen 20, Shah Alam.
"Setiap kali habis kelas, Nabila pasti akan masuk ke semua bilik darjah untuk bersalaman dengan guru, sebab itu dia sangat disayangi oleh guru-gurunya.
Ketika saya memberitahu guru-gurunya bahawa Nabila akan menjalani pembedahan besar Mac ini, ada yang menitiskan air mata dan berdoa agar pembedahan tersebut berjaya," tambah Rohana.
