AM I THAT Strong..??? perhaps not as strong as people think...

Bright sunny day, birds chirping, free hassle morning..that's all are blessings for me Alhamdulillah for the past 40 days I managed to stand strong walking my daily life...until yesterday..

It's been a week since I collected my laundry that includes Ghaziy's soft toys. Thanx to my best laundry shop "Precious" who took a good handling in cleaning the toys. I never thought that I could get sooo emotional touching the toys after a month since I sent it to the laundry. Post collecting it from the shop, I just leave it in the paper bag at the corner of my room. Just after Maghrib prayer yesterday, I opened it and I couldn't stop the shower of my tears. I was still in my praying dress and I was alone in the room. The moment I hold the red angry bird pillow my mind was cramped with every minute of my period with lil Ghaziy. Even though I keep telling myself to get hold of myself and to stop the tears before my hubby enters the room, I failed to do so.. I end up letting myself to burst the tears and I realized that I really miss that little guy.

I push the toys out of my sight few minutes later as I believed I haven't had enough will to look at it nonetheless to think where to hide it or to keep it safe. And there it is until now stuck in the paper bag at my bedroom corner. Perhaps my dear hubby will put it in storage later. After all, he did all the storage and safe keeping of my Ghaziy's wardrobe and toys.

I walked myself out of the room with reddish eyes and sobbing sound. Subhanallah, my hubby understands me so well and he make us out of the house in a minute for outside dinner. Despite my silence throughout the way to our dinner, my darling husband never stops cheering me up, pointing the optimism of our life and what a tremendous adventure awaits the two of us in future.

I guess that I'm not the strong person as what all my fellow friends always talks about. I stumbled into heavy tears even when I looked enthusiast throughout the days. The big hole in my heart is incapable of being filled.. but my dear sister, Elly said the time will heal me.. I do hope it will...

Thanks dear Saiful Nizam for standing, holding and lifting me up every moment of my life..

Mourn...neaaaahhh..

It'll be 40 days since Ghaziy's left me. There'll be time I'd whispered to myself whilst looking at his picture on my cell, "Is he really no longer with me? How could a cute lil fella died so early.." But I'l cut the thrash thinking ASAP. Alhamdulillah, I'm making myself busy day and night. I filled my time with work schedules, making plans and house projects...starting a hobby..

Speaking of starting a hobby..I love papers and cards..n of course I love my Ghaziy..so I plan to make a scrapbook in memoirs of his 11 months lifetime..on top of that I wish to challenge myself in realizing the project with a timeline.. I bet it will be interesting.. will keep posting on the actual date I'll commence my project though.. wish me luck!!!

By the way, for the past 30 days since I resume my day without Ghaziy, it happened that my abah wanted to make me a bit cheerful by organizing an outing to Kuala Selangor. The trip was joined by my elder twin sisters and the whole bunch of my nephews and nieces. We made our journey from 10am in the morning and reach home at 10pm..hahahaha..it was a marvelous day..Got to enjoy the sunset and ate lunch and dinner full of seafood.

It's unfortunate that Along couldn't make it to the trip. She had unavoidable event to be attended...

Till we meet again, insyaAllah..

It's been 2 years!!!!

Alhamdulillah..my marriage to Saiful Nizam Ali make its way to our 2nd year. We figured that marriage isn't as simple as we thought. there were hurdles and hardship that requires a lot of patient and tolerance between us. The path walked through by us was full with interesting accompanied with bittersweet experience having our truly special son, Muhammad Ghaziy.

The special part of celebrating my anniversary is that it falls a day after my Ghaziy's birthday. When I delivered him last year he became the greatest gift for our first anniversary. Even though I couldn't celebrate our 2nd anniversary with the little pumpkin, I was blessed to know that he'll celebrate it soooon in a world beyond my knowledge.

As for my darling husband, Saiful Nizam I would always feel blessed having him as my betterhalf. He'd been nurturing the positivism in my life, making me a strong lady walking through a hard and challenging life. My prayers to him:

Ya Allah…

Kau ampunilah dosa ku yang telah ku perbuat

Kau limpahkanlah aku dengan kesabaran yang tiada terbatas

Kau berikanlah aku kekuatan mental

Kau kurniakanlah aku dengan sifat keredhan

Kau peliharalaYa Allah..

Peliharalah lidahku dari kata-kata nista

Kau kuatkanlah semangatku menempuhi segala cabaran Mu

Kau berikanlah aku sifat kasih sesama insan

Ya Allah…

Sekiranya suamiku ini adalah pilihan Mu di Arash

Berilah aku kekuatan dan keyakinan untuk terus bersamanya

Sekiranya suamiku ini adalah suami yang akan membimbing tanganku dititian Mu

Kurniakanlah aku sifat kasih dan redha atas segala perbuatannya

Sekiranya suami ku ini adalah bidadara untuk ku di Jannah Mu

Limpahkanlah aku dengan sifat tunduk dan tawaduk akan segala perintahnya

Sekiranya suami ku ini adalah yang terbaik untukku di Dunia Mu

Peliharalah tingkah laku serta kata-kataku dari menyakiti perasaannya

Sekiranya suami ku ini jodoh yang dirahmati oleh Mu

Berilah aku kesabaran untuk menghadapi segala kerenah dan ragamnya

Tetapi ya Allah…

Sekiranya suami ku ini ditakdirkan bukan untuk diriku seorang

Kau tunjukkanlah aku jalan yang terbaik untuk aku harungi segala dugaan Mu

Sekiranya suami ku tergoda dengan keindahan dunia Mu

Limpahkanlah aku kesabaran untuk terus membimbingnya

Sekiranya suamiku tunduk terhadap nafsu yang melalaikan

Kurniakanlah aku kekuatan Mu untuk aku memperbetulkan keadaanya

Sekiranya suamiku menyintai kesesatan

Kau pandulah aku untuk menarik dirinya keluar dari terus terlena

Ya Allah…

Kau yang Maha Mengetahui apa yang terbaik untukku

Kau juga yang Maha Mengampuni segala kesilapan dan keterlanjuranku

Sekiranya aku tersilap berbuat keputusan

Bimbinglah aku ke jalan yang Engkau redhai

Sekiranya aku lalai dalam tanggungjawabku sebagai isteri

Kau hukumlah aku didunia tetapi bukan diakhirat Mu

Sekiranya aku engkar dan derhaka

Berikanlah aku petunjuk kearah rahmat Mu

Ya Allah…

Sesungguhnya aku lemah tanpa petunjuk Mu

Aku buta tanpa bimbingan Mu

Aku cacat tanpa hidayah Mu

Aku hina tanpa Rahmat Mu

Ya Allah…

Kuatkan hati dan semangatku

Tabahkan aku menghadapi segala cubaan Mu

Jadikanlah aku isteri yang disenangi suami

Bukakanlah hatiku untuk menghayati agama Mu

Bimbinglah aku menjadi isteri Soleha

Hanya pada Mu, Ya Allah…

Ku pohon segala harapan

Kerana aku pasrah dengan dugaan Mu

Kerana aku sedar hinanya aku

Kerana aku insan lemah yang kerap keliru

Kerana aku leka dengan keindahan dunia Mu

Kerana kurang kesabaran ku menghadapi cabaran Mu

Kerana pendek akal ku mengharungi ujian Mu

Ya Allah Tuhanku…….

Aku hanya ingin menjadi isteri yang dirahmati

Isteri yang dikasihi

Isteri yang soleha

Isteri yang sentiasa dihati

Amin, Ya Rabbi Allamin…….

Owh Allah the almighty, I surrender my fate to you and may You bless me with happiness in this life and moreover in the hereafter...

Last but not least, to Mr Saiful Nizam.. Happy Anniversary..

reminds me of my Ghaziy who loved this song n listened to it every morning..

Keuntungan Si Ibu Bapa apabila Anaknya meninggal sebelum Akhil(cukup umur) by Brunei fm on Tuesday, September 6, 2011 at 9:22am

“Lamanya di Barzakh itu ialah semenjak roh berpisah dari tubuh, semenjak meninggal dunia, sampai hari berbangkit”.“Bagi orang-orang yang beriman di Barzakh hanya terasa sebentar saja”.“Semasa di padang Masyhar, diriwayatkan bahawa anak-anak kaum muslimin yang meninggal dunia sebelum mencapai usia baligh, akan dizinkan memberi minum kepada ibu-bapa mereka. Anak-anak ini akan menyusup di antara orang ramai dengan membawa minuman untuk ibu-bapa mereka, sementara manusia ketika itu dalam keadaan dahaga yang luar biasa”.“Anak-anak yang mati sebelum baligh menyambut ayah-bondanya di pintu syurga”.“Anak-anak Muslim yang meninggal di waktu kecil, ertinya sebelum baligh di Barzakh dikumpulkan pada suatu tempat dan diasuh oleh Nabi Ibrahim. Setelah kiamat nanti mereka itu langsung dipindahkan ke syurga akhirat. Jadi mereka ini tidak mengalami panas matahari, tidak melalui hisab, iaitu pengadilan di Mahkamah Rabbul-Jali. Tidak melalui mizan, dan tidak meniti Titian Shirathal-Mustakim yang terbentang di punggung api Neraka Jahannam itu. Mereka ini setelah dibangkitkan langsung dipindahkan ke dalam syurga Jannatun Naim”.“Setelah dipindahkan ke dalam syurga, maka anak-anak ini lupa kepada kehidupan dunia. Mereka lupa kepada ayah dan bondanya, lupa kepada kampong halamannya, lupa semuanya. Pada suatu hari nanti, ketika mereka sedang bermain-main menikmati kesenangan syurga, tiba-tiba ada malaikat memberitahukan: Hai Wildan (anak-anak yang mati sebelum baligh), lupakah engkau kepada ayah-bondamu? Sekarang mereka sudah berada di pintu syurga. Ketika itulah baru mereka tahu dan ingat kembali kepada ayah-bonda mereka yang selama ini mereka lupakan”.“Lalu mereka ambil air untuk diminum, makanan dan pakaian, lantas mereka itu berlari-lari sambil menangis menuju pintu syurga”.“Setelah terompet berbunyi, pintu syurga terbuka, maka sekalian orang berhamburan masuk ke dalam syurga itu, dan ketika itulah anak-anak ini sibuk mencari ayah-bondanya. Mereka berjalan ke sana-sini mencari tetapi tidak berjumpa. Sambil menangis membawa minuman, pergilah mereka kepada malaikat menanyakan: Oh, Malaikat, mana ayah dan bondaku? Kata mereka sambil menangis”.”Malaikat menjawab: Oh wildan, malang kamu, ayah dan bondamu terjatuh ke dalam neraka. Mendengar hal yang demikian maka anak-anak ini menangis dengan ratapan yang menyayat hati. Oh ibuku, Oh ayahku. Apakah kesalahanmu, ayah. Apa dosamu, ibu, maka sampai terjatuh ke dalam neraka. Mereka menangis dan meratap”.“Kata malaikat: Hai Wildan, jangan menangis, mengadulah kepada Nabi Muhammad SAW”.“Setelah anak-anak ini mengadu kepada Nabi Muhammad, lantas Nabi mengangkat kedua tangannya berdoa, lalu dikeluarkan orang-orang mukmin yang berada di dalam neraka itu”.“Setelah bertemu dengan anak dipintu syurga anak yang meninggal di waktu masih kecil, yang menjadi kerinduan siang malam selama ini, aduh gembiranya tidak terhingga. Berfirman Allah SWT dalam Al-Quran:”Pada hari itu mereka berjumpa dalam keadaan gembira.(Ad-Dahr: 11)

Subhanallah...ALHAMDULILAH.. The almighty really fulfilled His promise as arRahman arRahim towards me and hubby...
Having the said thought, I wonder why was I so disgrace to all nikmat and rahmat as stated in surah al Rahman, (55 : 14 )


Wallahua'lam...

A LITTLE PIECE OF MYSELF POST GHAZIY'S TOOK HIS STEPS FROM THIS WORLD

I was pregnant, we were very excited and looking forward to meeting this new person. The next 9 months went as smooth as could be with no complications, other than mild heartburn on my part. On December 12, 2010 Muhammad Ghaziy arrived into the world and our hearts.

From the very first he was so sweet, easy going, and peaceful. Everyone commented on how calm and beautiful he was and we all noticed how he had a cute chin. That December was the warmest on record and Ghaziy and I enjoyed every minute by going through our confinement period looking at the sunshine or look at the leaves from the sliding door of my sis in law home.

I went through a great and precious moment nursing and caring for Ghaziy. There were a lot of chemistry shared between us..more than I could ever imagine. resuming my work life made me misses the little guy more. I juggle a tight schedule of appointments and to be home as early as I could afford as the nanny would said, "Haaa.. Ghaziy looks happier and more cheerful once he listened to ibu and ayah's gave Salam". that's a miracle shown by Ghaziy. Merely calling his name during his nap will caused him to wake up and granting you a sincere smile. People will earn his delightful smile whenever they greet him with Salam. Nevertheles, a child could never be a child if he has no tantrum. Ghaziy loves to ride in a car or even his stroller. However, his problem was, he ain't favor the vehicle to slow down or worst, stop. Not even stopping for a red light. The moment the car continues to move, he would turn back to his calm face and indulge the scene from his window.

My hubby and I regularly has anxiety towards our son's light transmitted sound as if he's having flu. I would always refer the issue to pediatrician however they said it was normal and will go away on its own. The sound will disappear if he's sound asleep but never stop when he's awake. So, we used the salt water to clean his nose but the problem never solved. We continue praying that it will go away. Another anxiety was Ghaziy's movement. There was no movement on his lower body and he could only afford to move his hand slightly. I tried not to have the idea of him turning to be a person with deficiency. I was trying very hard not to be emotional when my parent and siblings speak up their anxiousness on my baby's development. Until I told my husband that I don't give a care to what people will say, Ghaziy is my child regardless that he abnormal, regardless he couldn't walk or move. I cried at my husband's shoulder and we end up the next day at our pediatrician which he finally referred us to Pediatric neurologists. Wee made appointments on 28th of April 2011 and we were scheduled to meet the specialists by 31st May 2011.However, on May, 1st it all changed as Ghaziy turned blue at my sis in law's house in Keramat. We were rushed to the nearest family clinic where he was assisted with oxygen until the ambulance took us to the emergency unit of Hospital Kuala Lumpur.

Over the course of the next 4 hours we watched helplessly as Ghaziy endured countless trials of finding his vein to insert medication line, and his last feeding was 8 hours ago which he barely had about an once of his milk. Finally the on-call doctor stopped her attempt and allow him to be fed but through a tube. He was asleep until 4 in the morning his heart rate went high and oxygen reading shows a dissatisfying number. Hence, he took a trip to the ICU. At that moment I lost words, I don't even know how to react. My world became blurry. The only thing I remembered doing was praying hard. We also prayed more than we had in our entire lives that this was just a horrible mistake and went through more Kleenex than you can imagine. You need to understand that hubby and I had no clue that anything was wrong, Ghaziy was responding, he could coo, he could smile, and his face, particularly his eyes, was always expressive. Then on May 3rd, the bottom of our world fell out. Our neurologist, told us that Ghaziy had SMA or Spinal Muscular Atrophy Type 1.

Hubby and I were devastated by the news, as you can imagine. Here we were one minute thinking our lives were perfect, only to be told that our sons life could be measured in days, but definitely would be only a few months. All our dreams, hopes, and wishes for this wonderful person were crushed in an instant. Everyday now became a priority of helping him have quality of life for the time he had left and trying to enjoy every minute that we were blessed with his presence.

We were fortunate to be able to care for him daily even though I wasn't allow to spend my nights with him. I started to get familiarized with machines to help him feed, suction machines, a machine to help us feed him when the time came, machines that monitored his oxygen levels, and then finally a biPap which became his best friend forever for the rest of his life. The time in the hospital had weakened Ghaziy, but caring for him was not much different at first. We were fortunate in that we could hold him, teasing him, play peek-a-boo, watching movies, play iPad games, and we could just spend time together. As he would get distressed, and get very sweaty from working so hard to breath, we knew that he was weakening. Fortunately, I was still able to take afternoon nap and lay my head next to him . I loved falling asleep looking at that sweet face smiling at me with those soulful eyes and I hope that he loved it too.

Eventually, the only times we got to hold Ghaziy was when doctors finished their rounds just to avoid any false alarm that he might be in distressed and after maghrib prayer; believe me we savored those few moments. Then in early July, 2011, as we celebrated his 7-month birthday, he got to smile more and to coo a lil bit louder. I truly misses his smiles. A single smile from him feels like a dime and it'll bring peace of mind whenever looking at him.

When we eventually lost Ghaziy he was unlike other SMA patients I used to read where they reached the point that they could not be on the respirator and balance his oxygen levels, and yet could not be off it without getting into distress. He was playing with us that beautiful morning when he suddenly stare down looking tired and he just fall asleep. He left us with his signature smile that we would never be able to forget and we could never share in words with public. We were blessed that we got the chance to hold Ghaziy and tell him how much we loved him as he passed from our lives on November, 15 2011.

Most parents with infants worry about waking up at 3 a.m. and having to settle or feed a crying baby. Hubby and I worried about waking up to phone calls and having to learn that it's nothing but a miscall from strangers. There were several times when both of us thought that we would not be able to, but this tough, brave boy would fight for just one more day. It is hard to describe the constant panic that you feel every moment of everyday. It is heart wrenching to watch your child go through such a horrible de-progression and watch this bright mind have to be trapped in an uncooperative body. Hubby and I had many moments where we thought of all that we would miss with Ghaziy, but mostly what he would miss out on. Simple things like walking, eating solid food, riding a bike, fly-fishing, going to school, feeling the ocean on his feet, falling in love and having children, even just being able to laugh. But then this wonderful, beautiful, bright boy would look at us with the greatest, most loving eyes we have ever seen and we would think of everything he could do. Like making us slow down and enjoy the simple, quiet moments. He made us appreciate the beauty around us, within us, and in others. Most of all he could brighten a room with just one look, or one smile. I honestly know very few people who can do that.

Ghaziy truly was the most courageous, peaceful, sweet person that we have ever had the pleasure of knowing. He really did teach all of us to take each day as it comes, to be patient, not to take anything or anyone for granted, and finally to realize that it is not the amount of breaths you take, but truly the moments that take your breath away that matter. We are better people for having known him, we are so honored and blessed to have been his parents, and we will miss him everyday. We know that he is in a better place and he is free from the chains that trapped him in this life, and for that we are thankful.

We miss you our brave boy and we love you, now and forever~

Ayah & Ibu

Stepping out from the cloudy mood

Salam... My motivation is a bit low for the past few days. Perhaps too much spending time in the hospital and witnessing many babies admitted on the same batch with Ghaziy moved on to the eternity land caused me to be demotivated.

There's a baby who was admitted to Ghaziy's ward last 3 months. A baby boy with a young parents who accompanied him throughout his days. He was a year plus with liver failure. He looked uncomfortable as his tummy growing day by day. He passed away last month.

Another baby by the name Danish who never see the sunlight also lost his battle due to multiple organs failure.

A boy named Amsya Isra' was also a child filled with strong will of a survivor. Fighting with heart failure on top of liver issues made him one strong little fella to survived for nearly a year despite his heart stopped for several times before he actually took his last breath.

And recently a girl who's been struggling with leukemia came for her routine checkup passed away the next day. I could still remember her voice calling for her father whenever he stood a bit far from her bed. She died the next morning when I got in the ward.

Yesterday there's a one year and a half girl, daughter to a very young couple lost her battle with liver cancer during operation to remove the cancer.

Those are the children who had been chosen by Allah that always reminds me that I may soon lost my Ghaziy. Knowing and looking at how they battled themselves in surviving their illness makes my heart shattered when they return to the Creator. My heart breaks each time I listened to their pain and uncomfortable cries. Finally they end their journey to be in a far better place. Al Fatihah to arwah Danish, Amsya, Jasri, Humairah, Orin, Shami and to our dear friend Kaeshav may he rest in peace.

That's another challenge and obstacle I need to overcome. It was tough, oh perhaps the toughest among all challenges that I'm facing. Prayers are the best medicine to it. Regardless that I've been telling myself that I've accepted what Allah has destined me and Ghaziy there'll be time my emotion got interfered and influenced by negativity.

My husband will disapprove me talking about this as he will always trying his best to make full of my mind with optimist and positive input and will always make me realize that whenever the challenge is unbearable we must always return to our Creator's will and insyaallah the hikmah is there. Alhamdulillah Allah wrote in my qadha and Qadar to be married to my dear husband. He'll be the person who'll lift me up when I fall into the deep sadness thinking of my baby's future. He won't be bored by my melancholy attitude in dealing with our son's issues. I hope and pray he'll always be by my side cause nobody could ever replaced him.

P/s: to my dear follower Nad. You're a strong lady who had been chose by Allah to outcome His test. No matter what people say and comment only take those that are optimist and to leave those that perish your soul. What you lost today is what warrants you in the hereafter, insyaallah...

Another happy day

Salam to my followers...

Started my day as usual, it's a quiet Saturday in IPHKL. Greet my little pumpkin Ghaziy with my warmest smile and of course he replied it in his sweetest way. Shukur he was granted a good health recently enabling our moments to be filled with joyful activity.

Resuming our routine (Me, Ghaziy & Hubby) we got him changed into his day clothes. It's a bit special today as I'm trying to put on him a long sleeves t-shirt bought 5 months ago, a day before he was admitted to hospital as part preparation of his 'raya' collection.
It's a bit hard to make him wear T-shirt with his biPap machine and possibilities of him desaturated. I'd whispered to him that he could cooperate as ayah really wants him to wear the shirt all this long.

PUTTING GHAZIY IN HIS T- shirt

Due to the fact that the little fella is on his tummy twenty four seven, I need to roll him and maintaining his breathing stability is part of my challenge. Alhamdulillah he looks find just until I loosen his biPap mask he started to look panic. Thus,I called for assistance from his nurses to roll him back and we did managed to put him into the shirt whilst he's a bit upset and his oxygen dropped for few seconds to 70%.

And a big OMG looking at him in his colorful theme today...

(I'll try to upload the picture of him ASAP..)

Post challenging moment making Ghaziy looks handsome, drove him sleepy...I tucked him to sleep and went off for short breakfast anddrove to my cousin's house in Kepong. I normally do any necessary activities like paying bills, get some new clothes for Ghaziy or making phone calls to my office during this short intervention period (between 11am to 1pm) where Ghaziy is asleep.

As I reached Yun's house how glad I am to look at her newborn princess, Khalila. I've been longing to see her and getting the opportunity even a short meeting lit up my while day. managed to took a picture of her and I even got her passport photo and she's soooo adorable... Eager to see her growing to 5 months age so I can pinch her plump cheek, a nasty thought though...hihihihi

As I returned to Ghaziy, the moment he saw me he said, "aaaaahhhh..." perhaps he's asking me hey... Where have you guys been? So, I showed him Khalila's photo and he's smiling at her little sister whom I dream to make as his playmate. Perhaps one day Khalila is able to visit Ghaziy...

The day continues the same and we have few visitors like atok, nenek and mommy with his 3 musketeers..

It's a fun and happy day and let's fill our heart with gratitude to Allah for granting such a day in our lives...

Back from fever

Assalamualaikum... Feels like it's been a while since my last post..what happened to me?

I did mentioned in my FB wall my anxiety of Ghaziy catching fever cause it's pneumonia madness in hospital. Praise to Allah, my boy is doing well lately save and except he's been a bit naughty after his morning bath causing the nurses extra work towards the end of their night shift. I'll talk about it later. It was me who caught high fever for the past 5 days. It's horrible when you need to be around your child whilst you are carrying virus that you don't even know what it is. You'll be in dilemma of infecting the precious person and feeling guilty of not attending him. You'll felt that the day moves in slow motion and upset when the father of your precious person telling you to keep your distance from the child (though you knew it's the best thing to do). On top of it, as the father to the precious person is your loving and caring husband, he'd also offered you to stay home while he'l accompany the child in hospital. Definitely my answer would be a big NO. My rebellious answer was, "I'd rather rest myself outside the ward rather than stay in bed at home", "who can take me to the hospital if anything happen to Ghaziy when you're beside him and I'm sleeping 'comfortly' at home?"

And I know that my darling hubby couldn't contest to my stern, stubbornness and firm statement. So, be it.. Even I could hardly feel my foot stepping, I walked through my fever days for five days and feeling like it's endless I made it. Now I do appreciate my health. No MC when you have a hospitalized baby who yearning for your support. And today, alhamdulillah I'm in better condition and how great it felt to cuddle him without the father caution,hahahaha...

Reminding of Ghaziy being naughty during bathing time it's been a straight 3 nights shift that he desaturated and turned pale. Reason... He was angry that he need to wake up even though he's the last person to do so in the ward. I bet he had grown up and learned to show off his disapproval, nonetheless he can't afford to be angry as he'll be struggling to breath..hopefully, he learns that...hopefully...

Postdated update..

October 19th 2011

As I entered the ward ( oooh.. I sound like I work in hospital, hihihihi) there's a tall doctor ,I mean very very very super tall. He looks surprised and admitted that he thought I'm his boss. I used to come across him previously during his on call but never knew he could be sooooo talkative.

Even Ghaziy noted his existence as he even sing a song about rainy day when the first drop fell. It's kind of enjoying having him around once in a while but too much of talking causes sleepless to the little guy. The nurses reported that Ghaziy was only able to have his afternoon nap after the doctor left.

Due to the fact that my son was lack of afternoon nap, he looked restless during the evening. His eyes filled with sleepy tears conforming the theory that he needs early goodnight. Hence, be it, changed him to his pajama did his routine suction and his Ayah recited Quran less than a minute, he totally fell into deep sleep. He looks like a ball when he's asleep. His sexy pinky lips and blushed plump cheeks make my thought of having a very sick baby. In addition, my spirit is motivated that he'll might someday come home with me...PERHAPS...INSYAALLAH...

P/s: lately I have issues in uploading picture to my blog and I'm trying very hard to overcome it. Dear followers, appreciate for your patient.

Another Day...

Ghaziy is currently showing positive stability. Though secretion amount has never been less, he learned to handle it with caution but maintaining his relax level. That is actually helped a lot. For the past 5 days, I managed to propped him up for at least 10 minutes a day giving him a relief on his shoulder due to prone positioning.

Why would my Ghaziy loves to be positioned prone?

That's a question I've been wondering. I never come across through any websites on SMA child's photos with prone position. I do wish I could have a person whom I could share her experience and knowledge in nursing and caring of SMA type 1 baby.

The doctors are helping a lot in making me understand the literal part of SMA natures. What causes the disorder and the bitterness of the prognosis but they unable to illustrate how the actual patient undergo their life. Perhaps it's something that the parent need to discover themselves.

As such, everyday shall be a challenge for me as Ghaziy will continuously teach me with new experience in becoming a great mother (I hope so..) to a special needs child.

14th October 2011

Arghhh..it was a busy day in the ward after nearly 2 weeks of calm ambiance surrounded the ward.
but for Ghaziy he has his own schedule to follow..hihihihi..he actually sleeps a lot hen the ward is in hassle..

the most exciting achievement for him today, he manged to stay prop up for 15 minutes without frown on his face in addition to a sweeeeeeeeeet smile.. Alhamdulillah.. held him on my arms another 15 minutes makes him smile ear to ear and he'll be excited whenever I rocked him a bit.
The little guy really knows how to enjoy himself..

need to cut short or today's post and no picture available as the broadband is a bit slow. See you tomorrow insyaAllah..

Bittersweet moments with Ghaziy

The day begins with a terrifying moment as I entered the ward. Cardiac monitor shows that Ghaziy's oxygen rate is 90% whilst the little guy signing his discomforts. In between the nurse started the suction procedure on him, which took less than a minute he just turned pale and the oxygen rate was dropping fast to 8%.

That was a scenario that make me decided to let Ghaziy remain hospitalized for the past 5 months. My adrenalin runs rapidly each time facing what the medical team call 'desaturation'. It's among COD of an SMA patient. Apart from that, COD could be due to lung infections.

As a mother I do wish that Ghaziy's disorder is just a nightmare and i'll wake up next morning holding him like a normal child BUT I rest the thought and hope to the almighty Allah to decide what's best for the little fella.

As we speak, the little guy is sound asleep whilst his tummy being filled up with milk.

A special baby...

Salam to all followers. Thank you so much for spending a moment on my blog. Even though Along said that my grammar was poor, I do hope you guys could digest my expressions (I never edit and write whatever that come across my mind). As for you, my dearest Along, 'Sorry, teacher..hihihihi'.

Let's talk about Ghaziy's behavior. He is a simple baby with a very low demand. He will never cry unless he is uncomfortable. He doesn't complain unless there is a need for him to complain.

Situations where he'll be complaining:
- pass motion;
- breathing discomfort;
- looking at strangers face without prior introduction;
- tired of watching videos.

He is a baby with high level of understanding, that's what all his doctors said. Any action or procedure against him need to be directly and softly informed to him.

Today it is almost 2months he hasn't come across with bad desaturation. We were so thankful to Allah the merciful we need not to face that our precious Ghaziy struggling to catch a breath. We could rest him from the biPap (his ventilator) for an hour to stare at his oval shape face grinning to us. Note that he will be EXTRA cautious with his breathing whenever interference is made to hi biPap. I actually need to ask for his approval to loosen or to fix the biPap mask or he'll get upset and could turn pale or worst, he'll stop to breath.

Doctors described Ghaziy as a baby with high socially gifted and full with expressions. Talking to him is like talking to an adult and it's important to make him understand every action taken or done to him. My first impression listening to what the doctors said was, 'Subhanallaaah'. My child couldn't move not because of he is retarded or brain disfunction but he only lost his survivor motor neuron in his DNA. Hence, his energy is fully concentrated to his mind causes him to be bright and intelligent.

I'll be sharing with you guys on nature of SMA child in my next post. I learnt a lot from the web and built my strength through digesting and understanding SMA facts. Accepting the facts requires me to go beyond simply relying to doctors explanation. Insyaallah, we'll meet again daaaaa...

Ghaziy's ward

Being diagnosed with SMA wherein the prognosis is death requires few options which me and hubby chose to let Ghaziy to have his sweet period in a hygienic and infection controlled environment i.e. the hospital itself.

A lot of sacrifice were made that lead us to the above decision. We wanted the very best for Ghaziy. And nursing at home will never be among the good idea. Thus, here we are a happy family in Pediatric High Dependency Ward (PHDW).

Life is full with surprises

With Ghaziy's presence me n hubby's life is always full with unexpected circumstance.

Knowing to conceive Ghaziy in April 2010 was the very best surprise I could ever imagine.

Delivering him 2 weeks from the due date was another surprise that rise my adrenalin.

However... Not all surprises are that great to be accepted.

On 1st May 2011, the little guy turned blue and was admitted to pediatric HKL. I had never imagine that he could be so much ill.

Me and hubby had an instinct that Ghaziy is different and isn't developing like his peers. We searched and google the possibility that he could be among children with cerebral palsy, floppy baby and delay development child.

It turned out that he holds worst expectation could one have. SPINAL MUSCULAR ATROPHY TYPE I (SMA).

Anyone heard of it? I had never heard of it. The horrifying surprise was when the doctors informed me and hubby that our dear son will not make it to the age of 2. Adding to it is that most babies couldn't even make it to their 1st birthday and most only holding till they're 6 months.

It took me weeks to understand the disease. Yet, accepting the fact that my baby will soon leaving me is terrifying. So, what I did is not to think negative and always put myself in optimist zone.

Chatty little Ghaziy

Just arrived in hospital this morning, I could hear a lite voice "aaahhh..". Guess who was it?
It was Ghaziy.. And that was what he's been doing the whole day. He begins to be chatty little guy. Even his nurses noticed it. They claim that he would called for a person to sit next to him and to actually talk to him.

He continues to make people to converse with him until isya' and he suddenly turn sleepy. And half hour later he was fast asleep..

It was great and overwhelming looking at his growth.. Perhaps next post I'll write about Ghaziy's disease to share with the public..

Here are some pictures of him taken 3 months ago when he was in early admission to paeds HKL...

Being mother....

Ppl always say, "it's never going to be easy being a mother".
Heard that from mama ever since I was a kid but never thought it's going to be REALLLLYYY tough.

Come join me for a piece of journey being a mother to a very very very special child named GHAZIY.