Kenangan yang hilang...

Antara gambar terbaru di Perpustakaan Raja Tun Uda. Nasiblah ini disimpan di dalam inbox gmail saya, jika tidak... dengan yang ini pun hilang sekali.

Saya berniat untuk membuat satu entry khas untuk Syafiah bila bangun pagi ini. Ye la... bersempena dengan hari lahir Hijrahnya yang ke-2. Hati berbunga riang pada asalnya bertukar menjadi terkilan bilamana saya menelek dan mencari gambar lamanya di partition D milik saya. Partition itu ada. Tapi nama saya pada partition itu telah hilang. Dan mana perginya partition E milik cik suami? Juga hilang.

Ini gara² kami menghantar PC untuk diservis pada hari Sabtu yang lepas. Pada kebiasaannya kami menghantar PC ini di sebuah kedai bernama Prism. Tapi disebabkan tuan punya kedai berada di luar kawasan dan di luar negeri Selangor, maka kami menghantar pula PC ini ke kedai lain.

Pagi ini, cik suami menelefon si 'doktor'. Malah dia menyalahkan kami pula kerana tidak memberitahunya untuk back up segala data di D & E. Saya berasa amat hairan sekali dengan reaksi begitu. Bukankah itu tujuan partition? Tujuannya jika terjadi sesuatu kepada sistem, dokumen tersimpan di partition akan tetap terpelihara. Pelik!

PC kami bukanlah PC baru. PC kami dah berusia hampir 5 tahun. Jadi sudah tentulah PC kami telah diformat berkali-kali dengan 'doktor' yang berlainan. Bukan setakat sekali ini sahaja. Dan kami tidak pernah memberitahu 'doktor' berkenaan untuk back up data sebab mereka tidak pernah mengganggu partition D & E kami.

Bayangkan betapa banyak dokumen tersimpan di sini sejak 4 tahun yang lepas? Bila saya mengenangkan gambar² anak, hati saya akan berdarah! Dan segala dokumen penting semasa saya berkerja dulu, yang saya masih gunakan sehingga kini, turut hilang. Bagaimana untuk saya mendapatkannya semula adalah sesuatu yang sangat mustahil.

Saya bukanlah insan yang cepat marah. Tapi perkara ini telah membuatkan saya benar² terkilan. Terkilan juga dengan reaksi si 'doktor' tadi. Reaksi² tidak bertanggungjawab ini bukan hanya kita boleh temui pada si 'doktor' namun ia juga boleh ditemui pada reaksi segelintir masyarakat. Malah disalahkan kita semula.

Berderai air mata darah sekali pun takkan mampu mengembalikan kenangan anak² dan keluarga saya. Mujur gambar² Syafiah yang terkini banyak disimpan secara online. Harus selepas ini, saya menyimpan semua dokumen saya secara online saja... dan semestinya kami takkan hantar lagi PC kami ke sana untuk dibaiki di masa akan datang. Dah hilang satu pelanggan. Mood nak wat entry asal terbantut. InsyaAllah nantilah...

Syafiah's latest look...

I keep on losing my words. However, still insisting to write and share Syafiah's wonderful experience with our loyal reader. And I lost words today too, especially after receiving a news from a parent of one of Syafiah's friends. Sridar passed away this morning. I cried, was feeling like losing my own child.

Remember this entry? That would be the last time we met him. I want to pay a visit to HSB to meet Selvi, but definitely I know I can't be there. She cried on the phone while talking to me. Car is with my husband. Not to forget with the swine flu pandemic, HSB is definitely a high risk area.

Back to my miracle, Syafiah met Dr. Roliza this morning as scheduled. The appointment was scheduled to check on her condition after she went to DEMC last Thursday.

Her weight increased to 7.9kg compared to 7.5kg last week. She's now healthier, left only a little mucus and she'll cough once a while. She finished her antibiotics on Monday and Fluhalt pills this morning. No wheezing. Smiling, giggling and talkative like always.

Her teeth came out at the same time. They are bottom left lateral incisor plus 2 molars, on which they caused her uneasiness. Not to say that she's cranky but she always talks loudly to express her feelings.

Few photos to share with you:

Recently captured by my niece, Anis.


Today's photos.

Thanks to all the prayers!







p.s. : Dengan rendah diri memohon maaf pada pihak yang berkenaan yang ingin menyumbang kepada kami menggunakan wang zakat, kami tidak boleh menerimanya kerana Syafiah tidak termasuk dalam mana² asnaf mengikut ketetapan syarak. Kang termakan hak orang lain pulak. Tapi bak kata cik suami, wang sumber lain tak pe.. hihi! Dasar!!

If you’re feeling down…

Pic courtesy of Google Images.

Life?
What is Life?
Nobody know for sure
Is Life a dream within a dream?
We have goals to achieve
lessons to learn and tears to cry
We have smiles that turn to frowns.
We have people to listen to,
friends to cry to, and NOTHING to die for!
If we feel alone look into the sky,
look to the stars, the clouds
count them or just just relax
Life is easy and fun at times,
but Life is difficult, Life is depressing,
but you can get through it no matter what.
When you feel you can’t go on..
cry till there are no more tears...
cry till you laugh, but never dwell on things
you can’t go back and fix them
All dwelling does is hurt you worse
No matter what Stay Strong.
"fake a smile until it’s real" -Jeb

Poem courtesy of Help.com.

Some days are harder than any other days... Kenapalah orang lain yang beria bertanya tentang aku dari si dia sendiri? *sigh*

Gantikan 'Orang Kurang Upaya' Dengan 'Orang Kelainan Upaya'

13 Jun, 2009 16:51 PM
Gantikan 'Orang Kurang Upaya' Dengan 'Orang Kelainan Upaya'

KEMAMAN, 13 Jun (Bernama) -- Menteri Belia dan Sukan Datuk Ahmad Shabery Cheek mencadangkan agar penggunaan istilah 'orang kelainan upaya' (OKU) diperluaskan bagi menggantikan 'orang kurang upaya'.

Menurut beliau istilah orang kelainan upaya lebih menggambarkan keistimewaan dan kelebihan golongan itu berbanding istilah lama yang memberi maksud lebih negatif dan seolah-olah merendahkan keupayaan golongan itu.

"Kita mungkin terlalu terikut dengan perkataan bahasa Inggeris 'disable' yang menggambarkan ketidakupayaan serta kelemahan golongan ini sedangkan sebenarnya mereka mempunyai kelainan dan kelebihan luar biasa yang kadang kala tidak terdapat pada orang normal.

"Contohnya, atlet paralimpik yang mempunyai semangat dan iltizam yang tinggi, serta kebolehan yang kadang kala manusia sempurna sendiri tidak mempunyai keupayaan itu," katanya kepada pemberita selepas merasmikan majlis penutup program 'Higher Institution National Expedition and Camping (HINEX) 2009' di sini hari ini.

Katanya, golongan OKU juga tidak ketinggalan menyumbang jasa dalam pembangunan negara termasuk menjadi pembuat kraftangan, doktor, guru, pensyarah, serta ahli perniagaan.

Majlis itu turut dihadiri oleh Ahli Exco Majlis Pengakap Malaysia Datuk Dr Mohamad Shahrum Osman yang juga Pengerusi Perbadanan Tabung Pendidikan Tinggi Nasional (PTPTN) dan Rektor Kolej Universiti TATI, Dr Mohd Rozilan Mamat.

-- BERNAMA

Sejak saya mendapat seorang cahaya mata terpilih, persepsi saya terhadap kehidupan ini berubah. Saya melihat mereka sebagai golongan yang hebat kerana kita tidak melalui apa yang mereka lalui. Kita tidak berada di atas meja bedah. Kita tidak rasa bagaimana kepala dijahit dan di'kopek'.

Apa ada pada istilah? Saya secara peribadi tak suka betul label dan perkataan OKU ni seperti mana saya tidak menggemari perkataan disable @ retard. Terfikirkah kita perbualan seperti ini mungkin wujud, "Ah.. dia tu OKU. Susah nak bergerak. Buat apa nak ambil dia bekerja?". Dengan wujudnya istilah ini, kita telah dengan tidak sengaja melabelkan/mengkategorikan golongan tersebut. Kelainan upaya dengan kurang upaya sama je. Tetap hasilkan label "OKU" jugak.

Inilah mentaliti masyarakat. Masyarakat perlu dididik untuk menghormati dan lebih sensitif terhadap golongan yang hebat ini. Ini tidak.. kadangkala segelintir yang educated pun pandang lain macam je bila orang² hebat ni lalu berhampiran mereka. Ada yang memandang sekali, banyak yang memandang banyak kali. Kepala anak saya mungkin saja nampak "kemek", dia mungkin saja tidak boleh duduk pada usia setahun lebih.. so what? Itu baru pandangan dan lirikan mata, belum lagi yang berkata-kata.

Di Indonesia misalnya, di penghujung bulan Mei 2009 golongan terpilih ini dikehendaki untuk memakai sign "for their safety". Perbincangan tersebut telah dibentangkan di dalam Parlimen Indonesia. Dan hasilnya, orang² terpilih ini telah mengadakan demonstrasi jalanan.

Disabled people demonstrate for equal rights in Jakarta

Dipetik dari blog Dianne:

But it says something about a society when they think the onus is on the person with a disability to label themselves as such, rather than on the road users to take due care with ALL pedestrians.

Saya bersetuju dengannya. Sepatutnya masyarakat mengambil tindakan proaktif untuk menjaga satu sama lain ketika di jalanraya apatah lagi menjaga golongan yang terpilih ini.

Bagaimana pula dengan pendirian anda?








p/s : Sorry la... saya tetap beranggapan kepala "kemek" dan perangai Syafiah tu adalah satu yang normal. Ya.. normal untuk saya yang melaluinya.

Down the memory lane..

I could still remember vividly what happened to me on one Friday afternoon like this 5 years ago. I had a terrible running nose and headache. My body ached. Even my feet were puffed-up. It had almost a week.

Suddenly I could feel a thick white liquid came out from my V. As usual, I wasn't panicked at all even though I was home alone. I got my cellphone and called my husband who was in the office. Later, I called my mom who was in kg to ask for her advise on what's going on with me. She said that it might be a signal.

I packed few of my clothes.

That evening after my husband returned from work, we headed to Shah Alam. In my heart, I was really hoping that I would feel it that night. No.. I didn't feel the pain at all. After eating pizza, we came back. I said to my husband that it's okay as we'd meet the gynae the next day.

So we met my gynae on Saturday as scheduled. My gynae told me that surprisingly my BP has gone up a bit. Maybe I was excited. Later I told him (I had the same gynae twice but then we changed gynae following my husband's advise) that I've this kinda signal on Friday - a white thick liquid. No.. it's not like that 'keputihan'. It's different.

He advised me to be admitted that day. We waited on a temporary bed at Level 3. We had lunch. There's nothing happened yet. Nurses came to check on me several times. They said that I've contraction but I didn't realize it until I went through the CTG test. The sound was fantastic, like a horse riding!

A nurse came to us on 4 pm. She asked me to consume a pill. After that, I felt that I wanted to poop. When I was in the bathroom, the water broke. That was the first time I felt the pain. The same nurse headed us to the labor room. They put on the drip and asked us to wait. She measured the opening length. It was 6 cm. One of them told us to find them whenever I wanted to poo poo again. And she also told me that my daughter might be born on 9 pm.

Not long after she was walking out the room, I felt I wanted to poo poo again. So my husband caught her and told her what I felt. She came back with my gynae. My gynae was supposed to meet his family somewhere in Bangi that he would like to watch a game with them. He wore a jersey shirt. When asked, he replied that he would rather see a newborn baby. He's really committed to his career. His assistant measured again. This time it was 10 cm.

After a short battle, I felt really exhausted. I was still having headache and running nose. In fact, I was having a fever. Her head circumference was very big too. My gynae decided to use the vacuum procedure. She was later born on 5.05 pm. Weight at about 3.4 kg.

A nurse put her on my chest without cleaning the blood. I touched her cheek with my finger. The feeling was indescribable. Like you're touching an angel. After that, they took her away for cleaning and first day Vit-K injection. She was in nursery until 9 pm when we asked the nurse to bring her to us.

Here are some old pictures. Sorry the photos are not clear. I've shot them again by my cellphone.

I was holding her for the first time


Mom was holding her on the 2nd day


Yo! Peaceeeeee....!


1 month old


2 months old at Awana Kijal


2 months old


Sket lagi dia boleh jadi anak Michelin


She is very closed to her daddy until now. When she was little, she loved to climb on daddy's laps to sleep. She was fully BF.. tengok la pipi dia yang berketul tu

I remember how I really loved to eat Italian foods, drink coffee and eat bread when I was conceiving her. Like always, I haven't planned to do anything for her today except I asked her daddy to bring back slices of cake for both of them. Nantilah insyaAllah ada rezeki kita orang bawak dia gi jenjalan hujung minggu ni. Oh.. before I forgot, I won't be able to attend to MSK gath. Sorry... saya ni jenis tak suka gathering.. aci dak? Lagi pun tak tahu lagi. Mungkin nak ke satu event pada sebelah malamnya, wallahu'alam.

I just hope and pray that she'd turn to be an amazing individual without forgetting who she is, where she came from and what's the purpose for her to live in this world, ameen. Happy 5th birthday, Mastura. We love you always and so glad that Allah swt sent you to us, alhamdulillah. Ughh... how fast the time flies!

24 hours to live...

She has only 24 hours to live. The future was uncertain. The world was gloomy and suddenly turned to nowhere to go. I was not ready for a life long battle. Indeed, it was one of the saddest days in our lives.

She was a healthy baby in the womb. We, and even my gynae, could not predict that she'd born as a preterm baby. Even worst, we did not know her gender until she was born (her positions varies everytime we 'looked' at her). Everything was ok and everything happened so fast too! This journey was and is actually her destiny! She chose to be the one.

On that particular day, specifically on Wednesday, 16 January 2008, I received a phone call from HSB around 3 pm, required me to be in NICU immediately. The nurse who called me spoke gently and called me twice. I said I've to wait for my husband. My husband came back around 4.30 pm and immediately brought me to the hospital. I was resting at home alone. Mom was in Mekah, MIL took care of my kids at her house.

At NICU, one of the nurses came and took my blood. I was really calm. Dr. S came to us and asked us to sit on a sofa at one corner nearby the pantry. We waited. Then about half an hour she came again and explained what's going on with our daughter. I did not cry just yet!

I was so emotional when I looked at her condition. I could remember her chubby cheeks the first day she was born, turned to be so skinny. Pale. Almost no blood at all. Wires and drugs were everywhere to be seen. And not to forget the breathing support machine too. No reaction at all.

There were several complications. She stopped to breath (apnea), lungs hemorrhage (one of the vessels in her lung suddenly exploded) and when she lost her blood, meaning she lost the oxygen too. The oxygen is significant for all body parts especially the brain. Consequently, it led to a brain injury called intraventricular hemorrhage (IVH). As a result of this condition, her CSF couldn't be absorbed naturally as the blood clot has obstructed the channel.

I tried to control my emotion as much as I could as I knew that she'd feel the same way too. Dr. S came to me and pat on my shoulder trying to console me. I knew that I've to be strong and showed her how much we supported for her to continue living. Once in a while I would cry quietly - in the pantry while breast pumping, in the waiting room but it must be not in front of her. I tried to justify on what should I do next and what would happen to our lives in future.

I could not stay in HSB that night as the bed was full. To rest, me and my husband would stay for a while in the waiting room. Dr IH, the head allowed us to be in HSB for unlimited period and he even spoke to the guard to let us in whenever we liked to be in. He said to the guard that our daughter was in a critical condition.

I entered and exited NICU many times. At one time around 9 pm, we met Dr IH when he was checking and examining Syafiah. He explained that in next 24 hours was a very crucial period. That she might only have 24 hours to live. They have to monitor her very closely. I also noticed that he set the breathing machine to the max. He said it was necessary since her lungs was very weak after the complications but at the same time, he was afraid of the consequence, the lungs might collapse! If it was collapsed then there's nothing more that they and we could do.

I waited and prayed all the time. Deep inside my heart I was badly hurt. I was helpless as I could not perform Hajat prayer and could not recite Quran too (more to calm myself down), mom was unreachable, only left my husband and God to turn myself to. We returned home on 12 am with heavy hearts. If I stay, I could not rest properly, if I go home, I would leave our daughter there. But even if I stay, there's nothing much I could do except for waiting and watching her (plus doa continuously). We left it for Allah swt to take care of her.

When she survived that night I realized that she could make it and survive another night. I knew that she has the determination to continue and fight for her life. To see her determination, it has lifted my spirit up. I must be strong for her and I should not be defeated by a small baby who is a tough fighter. She herself is a miracle sent by God to us.

I'm glad today that I did that for Syafiah. We've been through one of the saddest days in our lives and we wish a future full of joy and miracles ahead! InsyaAllah.. ameen...




I wrote an entry yesterday and deleted it few minutes after that. If you guys have read it, please forgive me for showing my stupidity (again and again!).

Teacher suruh cium ibu...

Mastura : Ibu... ada kad love dalam beg! (excited bunyinya)

Ibu : Masuk la dulu...

Mastura masuk dan terus membuka beg di depan pintu. Sedang saya mengunci gril dan mangganya... kelihatan dia tersenyum-senyum....

Mastura : Teacher Fika suruh cium ibu...

Saya pun menyuakan pipi lantas dia terus menciumnya. Anakku dah besar rupanya... There's a first step for everything dan inilah kad hari ibu pertama yang pernah saya terima. Hati ini tersentuh...

Boleh pulak dia tertidur di buaian sementara menunggu kami untuk pulang ke SU. Masa ni dia di rumah maktoknya.

Selepas makan, nun di ruang tamu kedengaran suaranya membaca buku tadikanya. Kini sudah masuk siri ke-5. Sungguh.. saya berpegang - dapat A ke well done ke very good ke, adalah satu bonus untuk ibu bapa. Saya tidak memaksanya. Jika tak dapat pun, dia tetap anak saya yang amat saya sayangi.


p/s: Mastura adalah anak yang tidak perlu disuruh sungguhpun dia baru berusia 5 tahun (dalam Hijrah dah cecah, ikut masihi bulan depan). Semalam dia membetulkan kedudukan Syafiah yang melasak. Adakalanya mengajar pula si Adam untuk membaca, dan adakalanya dia membantu si kecil untuk berstimulasi. Apakah lagi yang seorang ibu seperti aku perlukan?

Antara harapan dan impian...

Saja je letak gambar ni... nak tenangkan minda berserabut!

Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead - Louisa May Alcott (1832-1888)

Aku : Therapist kata apa? Ada harapan ke dia nak jalan?

Si dia : Ada... insyaAllah...

Aku : Hopefully...

Itu cerita semalam sepulangnya si puteri dari menjalani terapi. Setiap hari begitulah kami. Menganyam harapan dan impian. Adakalanya tersadung di tengah jalan. Namun tetap cuba bangkit walau pun cahaya mungkin saja sebesar cahaya lilin atau pelita minyak tanah.

Saya kini jarang benar dapat ikut Syafiah menjalani sesi terapi. Mungkin tiada langsung untuk tahun ini sejak Mastura dimasukkan ke sekolah tadika. Sekali-sekala sesi terapi ada diadakan pada waktu petang, tapi yang banyaknya sebelah pagi. Suamilah terpaksa berkorban.

Saya perlu berada di rumah menjaga dua orang anak lagi. Si kakak perlukan seseorang menyambut ketika dia pulang dari sekolah. Kadang belum sempat membuka baju, dia telah mengeluarkan kerja sekolah. Budak tadika zaman sekarang! Zaman kita dulu main je kerjanya.

Sebenarnya kami dua² perlu berkorban. Saya perlu berkorban dari mengikuti program bersama Syafiah. Si dia pula perlu mengorbankan waktu di pejabat. Alhamdulillah bos si dia mengerti. Malah bos si dia jugalah yang meminjam kami CD Brahms dan Schubert untuk diperdengarkan pada halwa telinga Syafiah (dan jugak sayalah tu sebab saya peminat muzik klasik). Padahal bosnya berbangsa asing. Bos jugalah berusaha dan berjanji berbuat 'sesuatu' pada suami yang pada akhirnya suami naik pangkat lagi tahun ni walau pun tahun lepas banyak kali ambil EL dan unpaid leaves.

Perkembangan Syafiah tidaklah sehebat kanak² lain seusia dengannya. Namun masih ada perkembangan berlaku yang nampak kecil pada mata orang tapi amat hebat dan besar pada mata saya. Saya bersyukur sekali sebab saya dikurniakan anak yang pelbagai. 2 luarbiasa, 1 extra luarbiasa.. lebih power. Membandingkan anak bukan cara saya. Anak ini jalan bla bla bla, anak itu pandai buat itu ini masa umur dia yadda yadda yadda... Tapi hari ini saya rasa amat bersalah sekali kerana membandingkan Syafiah dengan anak seseorang. Maafkan ibu... hati ibu lemah wahai anakku! Maafkan ibu kerana kurang mempercayaimu... and I feel so damn guilty about it! Membuatkan ibu yang rasa kekurangannya semula. Mungkinkah sebabnya masa perlu dibahagi-bahagikan antara anak² yang lain, untuk ayah malah untuk diri ibu sendiri? Mungkinkah ibu yang bersalah?

Apa Syafiah pandai buat:

1- Meniarap. Hampir setiap hari selama seminggu kebelakangan ini. Walau pun kepalanya besar, tapi dia masih mencuba.

2- Cuba pegang botol sendiri. Mula tak perasan tapi semalam bila saya lambat suapkan, dia cepat je nak capai botol tu.

3- Semalam saya cuba mengikat lagi tangan dia pada sebiji bola. Siap ambil selotep besar. Dia asyik hentak tangan dia sampai tercabut bola tu tak sampai 10 minit pun.

4- Dia suka bermain tanpa dilihat oleh orang lain. Jika kita berada dekat dengannya jangan haraplah. Tapi kalau jauh, boleh je dengar bunyi²an yang terhasil dari hentakan tangannya pada bola atau alat permainan. Tu sebab saya letak alat permainan berdekatan dengannya.

Syafiah ni kurang senyum, kurang nangis, kurang merengek. Dia hanya akan senyum bila bermain dan mendengar suara saya. Betapalah mahal senyumannya tu. Ketawa apakan lagi. Tapi bukan tak de langsung. Cuba lihat gambar dia sebelum ni.. ada je gambar ketawa dan senyum... Dan alhamdulillah juga sebab body Syafiah tak pernah stiff selama ini.

p/s : Kadang rasa sedih dengan blog ni.. entahlah... rasa nak buat invite only je..