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Wednesday, June 27, 2012

IT'S NEVER BEEN EASY BUT... :)



When Ghaziy arrived to this world everything was beautiful, cheerful and meaningful. We were perfect quorum. Every hour we spent together felt so alive.And whenever he turned sad or upset we were there giving the best to dry his tears because when he was happy, so were we.. that's how I could describe our love to Ghaziy.

Through the pregnancy and the confinement all we had is each other and that was all. We ain't bother about the hardship the heat in a room or the crave of the forbidden foods.. all that important is he and I were together, like it was meant to be. 

Frankly yes, me and husband would be our each companion for better and for worse though sometimes we do have differences to argue on which resulting the feeling of lonely and angry to pop, Ghaziy was there to comfort both of us to a consensus because we knew that he loved us both.

So few months went by like a blink of an eye and we thought the perfect sun would always shine its sparkling and generous light. But he began to drift away out of his own consciousness. Our Ghaziy drifted to be hospitalized, a thing that would never come across to our mind. We felt lonely knowing that one day he would leave us to a kingdom that is so far far away... and the day for him to depart arrived. He left us with the sweetest smile a son could ever give to his parents. The smile defined that he is whispering his words of thankful and love towards us as his parents. The smile promises that we will be united as a family. The smile that we will never forget, am I correct dear husband..


Still I waited for the day when he'd say I love you Ibu, I love you Ayah.. and there are times when my evil thoughts visits me I felt lonely and forgotten and I'd never thought he'd look my way as he is in the greatest place a khalifah could ever imagine and I stand no where between the lines.

However, through the kowledge, spiritual support and faith as a muslim, I regain my strength knowing that he will be awaiting us on the judgment day itself with his sweetest smile towards us and he will be holding our hands like he used to do proving the eternity of his love to his parents, guiding us, assisting us, pleading on our behalf just to ensure that he will be united forever with his dear parents after a long and bitter separation in the world.

There is no word to describe the pain we are hurdling loosing our very first child. He is our marriage spirit and he is our teacher in becoming a better person. Our tears never dry... but we definitely hide it because we know that our Ghaziy would want us to stay strong and to be brave to take a new step in our live just in the meantime prior to our unification with him. He was a brave and strong little child, striving his lifetime like no ordinary babies and we need to be as tough as he had taught us through the 11 months of his life in this world.

Whenever we have tears in our eyes  we just think that there is a handsome son of ours who never fail to love us and our world will turn so beautiful when such thought flashes into our mind and to our dear Ghaziy, please know that every hour we spent together lives within both Ibu's and Ayah's heart...


Till we meet again.. wassalam...

Thursday, June 21, 2012

MEMBELAI HATI & JIWA...

Known this song eversince I was in school... tp masa tu hanya dengar macam angin lalu..years past by, and I've grown older, listening to the lyrics touches my sentiment.. Gerun dalam hati bila bermuhasabah.. Runsing andai taubat yang tidak memadai.. bermunajat is my best meditation, a supplement to the solah... may Allah grant me the piece of mind in hoovering all life's obstacle.. may Allah grant me taqwa in every happiness I gained..as every strive in this world comes with hikmah (the sweetness in bitterful test) I do hope my Iman will grow strength every minute, every second of my breath...






Tuhan... kubisikkan kerinduan
keinsafan... pengharapan...
Tuhan...kusembahkan pengorbanan
Membuktikan kecintaan

Bisikkanku untukMu
Munajatku mohon restu
Semoga cintaku bukan palsu
Pada desiran penuh syahdu
Gelombang lautan rinduku

Munajatku dalam syahdu
Merindui maghfirahMu
MardhiaMu dalam restu
Harapan tulusnya hatiku

Kurindukan pimpunanMu
KeagunganMu dalam doaku
Kebesaran pada kudratMu
Ia membina rohaniku

Tuhan... kubisikkan kerinduan
Keinsafan... Pengharapan...
Tuhan...kusembahkan pengorbanan
Membuktikan kecintaan

Ujian kepahitan di dalam kehidupan
Padanya ada kamanisan
Ketenangan dan kebahagian
Bayangan syurga idaman

Munajatku dalam syahdu
Merindui maghfirahMu
MardhiaMu dalam restu
Harapan tulusnya hatiku

Kurindukan pimpunanMu
KeagunganMu dalam doaku
Kebesaran pada kudratMu
Ia membina rohaniku

Tuhan... kubisikkan kerinduan
keinsafan... pengharapan...
Tuhan...kusembahkan pengorbanan
Membuktikan kecintaan...

Monday, June 18, 2012

A big dilemma

When speaking on being a mom to an SMA child there are so many ethical dilemma I need to face.. Beforehand I need to face a genetic counsellor that suppose to well consult me and husband on our family planning.

This is where how I wish that I'm a lavish rich lady or how I wish I'm living in USA or UK. The knowledge of the other countries and sympathy of the government are greater than ours.

I was first told last year that prenatal test for SMA is fully sponsored by our govt.. That was during my Ghaziy was still hospitalised. And definitely I have no idea to get pregnant at that time..

As time flies and we agreed to give a shot on another child, as I just started my research on prenatal test, the procedure, the findings, the effects and the cost... I'm a bit disappointed when our genetician informed us that our govt is no longer funding the test. Though, the cost is only about 2k, still the needy would appreciate the benefit of the fund. So, be it..

There was one say, our govt prefer to provide chances and opportunity to those that would have more chance of living.. crap.. hate to think more of negativity let us just live the issue and talk about things that can be done rather than singing to a lagu sumbang on the dark side being abnormal..

Basically the best prenatal test to determine SMA is chorionic villus sampling (CVS). How it is done?

This was taken from Wikipedia.


It entails sampling of the chorionic villus (placental tissue) and testing it for chromosomal abnormalities, usually with FISH or PCR. CVS usually takes place at 10–12 weeks' gestation, earlier than amniocentesis(14–16 weeks).[citation needed] It is the preferred technique before 15 weeks.[2]
CVS was performed for the first time by Italian biologist Giuseppe Simoni, scientific director of Biocell Center, in 1983.[3]
Use as early as 8 weeks in special circumstances has been described.[4]
It can be performed in a transcervical or transabdominal manner.

Risk of miscarriage in CVS is about 0.5 - 1%. Apart from a risk of miscarriage, there is a risk of infection and amniotic fluid leakage. The resulting amniotic fluid leak can develop into a condition known as oligohydramnios, which is low amniotic fluid level. If the resulting oligohydramnios is not treated and the amniotic fluid continues to leak it can result in the baby developing hypoplastic lungs (underdeveloped lungs).
Additionally, there is also mild risk of Limb Reduction Defects associated with CVS, especially if the procedure is carried out in earlier terms (before 12th week of pregnancy).[7]
It is important after having CVS that the obstetrician follow the patient closely to ensure the patient does not develop infection.



Frankly.. I am feeling goosebumps looking at the picture and thinking that I need to go through this.. but I believe with the assistance from Allah, InsyaAllah everything will run smoothly on the day.. afterall it would be worth of trying as we are human, our job is never to give up ikhtiar and to surrender the end to Allah the most knowledgeable and the merciful..

Wednesday, June 13, 2012

LET'S LEARN MA'THURAT :)


I'm thinking of converting this blog to be my journal.. couldn't commit to write on daily basis but I wish to phrase sentences as I would speak them to myself. So, here we go....

Astaghfirullah...I'm running late to my favourite session of the week. USRAAAHHH!!!!
Alhamdulillah, made it to the venue just in time before Ustaz Wan Hamidi started with Ma'thurat routine. I really enjoy reciting Ma'thurat.. as human who would always have 1000 of excuses of not doing good deed, at least once a week I've blocked myself to a ritual routine to purify my soul.

Dulu-dulu, zaman sekolah, hari-hari I recited Ma'thurat.. Lama-lama, dah further study, then started working leka dan alpa dengan kerja and poor time management.. Walhal, the act is sooo demanded and full with benefits.. So, what could be the benefit of reciting Ma'thurat..? Hmmm..

1. Tidak dihampiri syaitan
2. Rumah dan keluarganya terselemat dari perkara yang tidak diingini.
3. Allah mencukupkannya apa yang sangat diperlukan dari urusan dunia dan akhirat.
4. Orang yang membacanya kemudian dia mati pada hari atau malam tersebut maka Allah akan menjamin untuknya syurga.
5. Selamat dari segala sesuatu.
6. Allah menyempurnakan nikmatnya ke atas orang yang membacanya.
7. Allah berhak untuk meredhainya
8. Tidak ada sesuatu yang mendatangkan mudarat ke atasnya.
9. Terhindar daripada syirik.
10. Selamat dari bisa atau sengatan semua makhluk yang beracun.
11. Dimudahkan menyelesaikan hutang-hutang.
12. Berhak untuk mendapat syafaat pada hari kiamat.
13. Sesiapa yang membaca di waktu pagi,akan dipelihara oleh allah hingga ke waktu petang.Dan sesiapa yang membacanya di waktu petang akan dipelihara hingga ke waktu pagi.
14.Mengamalkannya umpama mengamalkan Sunnah Rasulullah dari sudut zikir dan berdoa, dan berbagai lagi kelebihan.

Kredit: IluvIslam.com dan www.hatikering.wordpress.com


Mengikut Ustaz Wan, setiap doa mempunyai kelebihan tersendiri.. and I wonder will I'd be able to read with digestion of the true meaning.. insyaAllah.. berilah ku petunjuk ya Allah dalam mencari sinar iman Mu..

PENGERTIAN DAN KEUTAMAAN AL-MA'THURAT

1. Al- Ma'thurat merupakan wirid dan doa harian yang diamalkan oleh Rasulullah SAW. Baginda adalah orang yang paling mengetahui betapa besarnya ganjaran yang diperolehi dari amalan doa dan wirid tersebut...

2. Wirid, doa, zikir dan istighfar dalam Al- Ma'thurat ini akan memantapkan jiwa di samping memiliki keutamaan dalam segala aspek kehidupan. Mendidik hati agar sentiasa merindui kepada Ilahi dan memberi kelapangan hidup dan kesihatan jasmani...

3. Bagi seorang muslim masanya tidak berlalu begitu saja. Dikala pagi dan petang ia sentiasa bertasbih, istighfar, tahmid dan berdoa kepada Allah dengan zikir yang ma'thur ( yg berasal daripada Nabi SAW )...

4. Jika sesiapa mengamalkan zikir Al- Ma'thurat ini akan merasakan perbezaannya dengan hari2 yang tidak dimulakan dengan zikir Al- Ma'thurat. Begitulah kekuatan doa2 dan wirid dalam Al- Ma'thurat ini sebagai senjata mukmin...


Kredit: IluvIslam.com dan www.hatikering.wordpress.com


I always fear that I would be deviated by Satan, the above proved that to avoid such disturbance of Satan kita mesti beramal dengan zikir dan doa amalan Rasulullah SAW & moga dilindungi oleh Allah dari segala gangguan syaitan & terhindar daripada bala bencana.

And I do feel the difference IF I started a day with Ma'thurat it'll filled with more lights, cheers and kelapangan hati compared to the day I missed reciting it. Harapnya, amalan ini menjadi istiqamah buat diri ini...Wallahualam..

Kredit: IluvIslam.com dan www.hatikering.wordpress.com


Meanwhile, research on what is chorinic villus sampling is doing great. I'm trying to place some anticipation consequence should I need to undergo the procedures..a simple procedures but it bears slight potential of miscarriage.. perhaps dear journal, we'll discuss and lay down the points in next post, insyaAllah..


Sunday, June 10, 2012

HEART vs. MIND

Assalamualaikum... ada something I wish to share with my followers.. something a bit personal that I always munch them on my own.. its been a while since I cry out loud when I have a thought on my Ghaziy.. but last night I shed into an unstoppable cry...

 I was juz done with my Isya' prayer which a bit late sebab melayan cerita Sekali Lagi @ Mustika HD. A sad story with a cheers ending. Spending my night @ my sister in law house is no big issue as we always spend nights there. Cumanye... selesai solat, tetiba je rasa hening sangat.. My mind was flown back to moment I'm under confinement in that room with my Ghaziy next to me..

 I was praying in the same room I spent my days and nights berpantang. Teringat, bila nak tidur both of us will be showered with sweats coz the Ayah said ibu and Ghaziy tak elok kena direct fan. I started remeber how I woke at nights to breastfeed the little guy and curi curi tarik kipas from his Ayah..and that made me crash into tears.. Suddenly I felt so angry not to be able to comfort my baby enough while he is beside me.. I cried and cried until my husband entered the room.

I'll regain myself with istighfar and my heart started to fill in peace and rationale thinking. Nonetheless, I make promise that I am not going to allow the same situation to be repeated. Most probably, I couldn't afford to undergo another trip of confinement in the same room...the same fan...

 Perhaps people would think I overreact on the situation. Though, that is what and how I felt. and thank you Allah for granting me an understanding husband to comfort and sooth me whenever I lost myself to depression.

Once I got back to my strong will, I recite this..and syukur.. I found peace pace in my heart..


Ya Allah,
Moga anakku bersedia menolong ku & suami untuk membuka pintu Syurga buat kami...

Ya Allah,
Izinkanlah anakku yang 'pergi' itu  sentiasa menungguku di pintu syurga, menunggu ibu & ayahnya hadir mendekatinya... 

Sesungguhnya Engkau ya Allah lebih menyayangi anakkku..
Sesungguhnya Engkau Maha Mengetahui apa yang terbaik...
Aku redha ini satu ujian dariMu kepada hambaMu yang hina ini.
dan aku mohon dikurniakan ketabahan dan kesabaran serta redha atas ketentuanMu ini...


Friday, June 8, 2012

MRDS - Malaysia Rare Disease Disorder

Hello Malaysia... Guess what, a week ago I was called to meet up with parents with SMA children thru MRDS gathering today. It's unfortunate that only 2 existing members are known to form a group support for SMA.

So I just pulled myself and joined the gathering.. Finally I found a foot path to activate our glorious dream of having Malaysia SMA support team as one have in UK, US and Australia.

I would want people especially those who has big role in this nation to be aware the needs of minority group of SMA family in receiving the best possible care..

A lot to write but I'm short of time currently, till the next post... ;D
Alhamdulillah... feel blessed to be alive until now..sipping fresh air which is no longer purely fresh due to human's violation, though syukur...sbb Allah masih izinkan diri ini melalui a perfect life with my sweetheart, Saiful, my lovely parents and siblings.. Hari ini, I made another step on my research in overcming my anxiety towards future pregnancy. The doctors yang treated my Ghaziy, said if I were to conceive another baby, I am needed to inform the genetician ASAP. So be it, a test is require in order to avoid an affected SMA baby to be born. The whole procedures wajib dibuat before my pregnancy reaches 120 days. The reason being is that as setiap kali I pregnant, there will be 25% chance of conceiving affected child, which I really am not favor. Hence, if the test confirms positive SMA it will be a sad and devastating decission for me to give u the feto... Ya Allah, hindarilah diriku dari terpaksa membuat keputusan yang amat berat itu. Persoalan yang always clinging in my mind is that will the action of abortion is allowed in Islam???? Therefore, my research lead to this website http://www.e-fatwa.gov.my/artikel/pandangan-syarak-mengenai-pengguguran-kandungan. Sedikit sebanyak info yang dapat dirumuskan are as follows: Memandangkan kepada implikasi kos yang tinggi untuk menyediakan ‘Penjagaan Yang Sebaik Mungkin (Best Possible Care), satu strategi harus dilaksanakan bertujuan untuk mengurangkan kelahiran keskes baru. Ujian saringan dan kaunseling semata-mata, tanpa pengguguran janin, tidak akan mengurangkan jumlah kes-kes baru dan seterusnya tidak akan dapat mengurangkan beban penderitaan terhadap pengidap tersebut, beban kepada keluarga, masyarakat dan negara. Menggugurkan kandungan selepas 4 bulan adalah haram. Ini telah disepakati oleh para ulama’, kerana membunuh jiwa seseorang tanpa hak yang dibenarkan oleh syarak kecuali kerana darurat. Ini berdasarkan firman Allah S.W.T. Maksudnya: “Sesungguhnya Allah hanya mengharamkan kepada kamu makan bangkai, darah, daging dan binatang yang tidak disembelih kerana Allah. Maka sesiapa terpaksa (memakannya kerana darurat) sedang ia tidak mengingininya dan tidak pula melampaui batas (pada kadar benda yang dimakan itu), maka tidaklah ia berdosa, Sesungguhnya Allah Maha Pengampun lagi Maha Mengasihani”. (Surah al-Baqarah: ayat 173) Pendapat Fuqaha’ membahagikan peringkat pembesaran janin dalam kandungan untuk digugurkan berdasarkan kepada tiga peringkat selaras dengan Kaedah Fiqhiyah (memilih yang lebih ringan di antara dua kemudharatan) bagi mengelakkan bahaya yang berat: Peringkat 1 hingga 40 hari (nutfah - alaqah). Peringkat 40 hari hingga 4 bulan (Mudghah - Berbentuk). Peringkat 4 bulan ke atas (sesudah ditiup roh). Keputusan diambil kira dengan mengikut peringkat umur serta berdasarkan syarat berikut: Menurut ijmak Fuqaha’, haram menggugurkan janin yang telah berumur lebih 120 hari kerana pengguguran itu dianggap satu jenayah ke atas janin yang telah ditiupkan roh kecuali pengguguran itu untik menyelamatkan nyawa ibu atas sebab kecacatan yang teruk. Makruh menggugurkan janin yang berumur antara satu hari hingga 40 hari sekiranya tidak mendatangkan bahaya kepada ibu dan mendapat persetujuan kedua-dua suami isteri. Ijma’ Fuqaha’ berpendapat pengguguran janin yang berumur sebelum 120 hari harus sekiranya janin itu cacat dan berpenyakit yang boleh membahayakan nyawa ibu. Anyone out there who has opinion or comment regarding the above..feel free to throw any single thought that might assist me to go through this in future. Sangat appreciate to any info...I am looking forward to make the most wise and accurate decision for this matter.. Till we meet again in my next post..Assalamualaikum...

Thursday, June 7, 2012

RINDUUUUUU...

hmmm...Dah lama since I wrote my last post..too long, I guess. Recently I have been tide up with work and extra activities that I made up to fill in my free time (was not a good excuse of not writing, though). Frankly, I am dried of appetite to write, cause I am washed with tears whenever I open this blog dashboard. In brief, I felt the grieve of loosing my 'Warrior' more and more as the time passed. Hmmmm... bukan senang nak melupakan anak yang pergi ke tempat that we noted as the best place ever. It is true that my Ghaziy would be guaranteed heaven insyaallah and he will never ever forget me & his ayah once the time arrives. Nonetheless, I'm feeling bitter now and then.. struggling with the lost..imagining how would he look like as 1 1/2 year old baby. Sometimes he do drops in my dream but not in any mean that I can describe when I awake. Mungkin penyejuk hati yang selalu senang dipengaruhi negativities whispered by the devil is ONE DAY...MY GHAZIY WILL RUN FOR US..ONE DAY, OUR GHAZIY WILL LOOK FOR US..ONE DAY ALLAH WILL UNITE US WITH OUR GHAZIY. That are phrases me and hubby would always tell to each other... ONE DAY.. And in the meantime, life must goes on.. a smile need to be put on my oval face daily hoping that Allah will grant me a child that is free from autosomal recessive.. a child that I can cuddle every night... a child that every parent would have dream.. Insyaallah... Currently, my determination is to plan for a baby.. Banyak research I made on keeping track of mensus. Coicidently if Iam pregnant it is important for me to undergo a prenatal test. Based on my research, prenatal test yang qualify for me and the situation is CHORIONIC VILLUS SAMPLING (CVS). Bunyinye macam adventurous je if I am getting pregnant.. so, please pray for my rezeki everybody.. andddd..paling penting DOAKU PADA ALLAH TAK PERNAH KURANG AGAR DIKURNIAKAN ZURIAT YANG SIHAT DAN TERHINDAR DARI SEGALA PENYAKIT.. Next post, Insyaallah I'm going to talk about CVS.. sounds creepy, tapi bila kita bercerita pada orang mungkin rasa takut untuk face the reality will diminish.. berserah pada Allah setelah berusaha.. and I'll do that!!!