Wednesday, January 30, 2013

Akif's Battle Against Hydrops - Week 33-34

Hello Everyone,

Today was my last ultrasound and no changes in Akif. Hydrops still there, ascistes as well as the edema. But what also astounded my feto-maternal specialist was Akif's heart, beating strongly and surviving against all odds. She was up front when she told Bonda that she strongly did think that Akif  would have expired intra-utero by now.

We are currently waiting for the results on the advanced DNA testing that they have conducted on my blood for Alpha thalassemia to find out whether Akif has St. Bart's, which is a syndrome not compatible with life. If that comes back positive, they will wait for normal labour to occur, as there is 0 chance of Akif making it out alive and they do not want to waste my c-sect opportunities (I already had 1 for Airiel, so 3 left).

If that comes back negative (which would mean that the hydrops is still idiopathic and is due to unknown causes) and I hope to know latest by next Monday due to the amount of holidays in between that, then I am slated for surgery on Tuesday, 4th February 2013 to get Akif out. And I will be warded by Monday the day before.

We had a discussion with a neo-natal specialist who informed us of the poor prognosis, but was also optimistic about possibilities. If Akif survives...then they will try to determine the cause once he is outside my tummy and maybe then can fix it there.

Aries is as optimistic as only a man could be (either that or he is in denial - am not sure). I am hoping for the best but like I said, prepared for the worst.

I am hoping and hoping that it is not St. Barts. That it comes back negative. We do not have a history of this in our family at all but the doctors just want to be sure.

I am being 2 doses of steroid shots the specialists hope can help Akif's lungs prepare for life outside my tummy. So at 12 midnight I am going again to UH for a follow up jab after the first one this afternoon (it has to be taken at 12 hour intervals). Hurts like hell, but I don't give a crap. Whatever it takes.

Meanwhile, I am just preparing everything for my surgery. Packing my hospital bag, informing my bidan, keeping myself busy.

It is a long wait till the test results and also the surgery. But the moment is finally here. I will get to see my beloved Akif, and I will cherish the moment no matter how short it is.

Mama loves you Akif, enough to let you go if need be...enough to keep fighting with you if that is the way it is fated...

Please help this family dear Allah. YOU are our only hope.

Tuesday, January 29, 2013

Pantang Essentials - Part 2

Hello Everyone,

Tomorrow is going to be my last ultrasound. They will take Akif out latest by 7th February 2013 according to my specialist.

Regardless of the outcome, my confinement looms. So I need to take care of myself and prepare for the essentials. So I bought this traditional tungku. I bought the long one.

This is from Mayangsari

And bengkung in case I go for a c-sect from bidanbersalin.

If Akif makes it until tomorrow, a c-sect will be scheduled to give him his best chances of living. The specialist say that Akif will not survive the stress of a normal birth in his condition.

Meanwhile, I know things have been hectic at work and I am going out of my mind not really doing much. This has clearly been the longest time I have been away from work. But I must not be selfish and think about what I want, I want to be able to tell myself that as a mother, I have tried everything I could to save Akif, be it medically, holistically, traditionally...everything I could.

So if the doctor says to not stress myself even though there is no medical proof that this condition is stress-related, I am going to do everything in my power to stay stress free.

If Akif does not make it, at least I can tell myself that I tried...I really did.

Well, I hope everyone else will have a good week ahead. 

Hugs & Kisses

Friday, January 25, 2013


Yesterday I couldn't sleep.

Solat hajat, baca quran, solat isthikhrah, solat tahajjud and then I drifted in and out of a fitful sleep...last time I checked my watch it was 5 in the morning.

I had a dream...

I saw my grandfather...and he was with a bunch of children in a garden playing...or was it? I don't know, it was not like any garden I have ever seen before. It was like all different beautiful environments, all piled up and melded into one, you know what I mean? The river that was flowing was, WHITE white.

My grandfather was really handsome and wrinkle free. Dashing he is, no wonder my grandmother was smitten. I saw Azalia, my cousin...only, she didn't look like she did when she was here, but I knew it was her, she waved and went back playing...I saw some other kids playing around my grandfather which I knew was somehow related to me, but I could not recognise them or who they were.

He looked at me and he smiled, my grandfather. I remember feeling distraught and wanting to talk to him about something... but he only said this and I remember it clearly:-

"Ya Allah, dia adalah hambaMu, anak dari hambaMu, anak dari seorang hambaMU yang lelaki dan anak dari seorang hambaMu yang perempuam. Ubun-ubunnya berada di tanganmu, hukumMu berlaku ke atasnya, keputusanMu adil untuknya

Aku memohon kepadaMu dengan seluruh namaMu yang Engkau beri nama atas diriMu, atau nama yang Engkau turunkan dalam kitabMu, atau Engkau ajarkan kepada salah seorang daripada hambaMu, atau hanya Engkau yang tahu dalam ilmu-ghaibMu, kiranya jadikanlah Al-Quran yang agung sebagai hujam musim semi bagi hatinya, cahaya dadanya pelipur kesedihannya dan penghilang kesedihannya"

And then he smiled at me...and then I woke up.

And I immediately wrote this down.

Terima kasih Tok, kerana mendoakan cucumu ini. 

Tuesday, January 22, 2013

Akif's Progress - Week 32 (Rockwell - Knife)

Hello Everyone,

I have a lot of time these days, as I want to ensure in line with doctor's advice that I am stress free for akif. I have resorted to box folding and even sewing!

I enjoy just feeling akif moving and kicking inside. Sleeping seems to be a waste of time, I do not want to miss a single movement.

He is not growing anymore my feto maternal specialist say. His measurements for his overall size, organs and all seem to be stuck at 25 weeks. What are the chances of a 25 week old developed baby of surviving outside? Next to none. The specialist is just waiting to see if Akif survives until the 30th, or if the hydrops resolves itself, or whatever you know. Just whatever...

Bonda refused to answer the question of the percentage of survival. 10% I asked? She just kept quiet and shook her head. I was just asking her to see if she was more medically optimistic. The only thing she said was that, miracles do happen...and she continued to drive.

The truth is I already asked my specialist a few hours before, and I already knew how grave the prognosis was. 5% she says, but even that is an optimistic estimation she told me. My specialist held my hand when she told me. And I squeezed it back. I needed to know the truth, with it I can have closure and prepare myself.

And last week, I found out a truth that shattered the very core of my being, my existence, my heart and soul. 10 years of my life wasting away before me.

Allah must love me very very much. And in a sense I am grateful for that love, to be reminded that everything I have, is truly borrowed. That love which is mortal, is mortal after all, subject to weakness, to change, to betrayal, to lies...

I am letting everything go into His hands and believe everything happens for a reason. I am stronger than I thought I could ever be. I know that now.

And yes, Akif has survived another week. He is so close. He is a fighter just like his mama, he is strong, just like his mama. I would be grateful even if Akif survives for a day or two outside of me so I can enjoy his presence, even for a moment. It will be extremely difficult for me to let him go when and if the time comes, but I am mentally preparing myself for that, every single day. the very real possibility that I will be undergoing confinement without a child to show for it, without Akif.

But whether or not he survives, he is still my miracle. The specialist is surprised Akif has even made it this far. Everytime there is a checkup, she would  be really anxious to check for a heartbeat. Hydrop babies have a tendency to die intra-utero. Yes, he is a miracle to me in each and every way.

Yesterday, I heard this song, I have not heard it for the longest of time. The lyrics stabbed and stabbed me in the heart, until I fell asleep. It is the nights and the time I spend driving are usually the hardest for me. Too much time is bad, it makes you remember, it makes you reminisce, your heart breaks and breaks over and over again. You cry until your tears turn to blood. You wish things were different. You are immersed in so much pain that you think you will die of the grief. The curse of time, I find.

Rockwell - Knife

You touched my life
With the softness in the night
My wish was your command
Until you ran out of love

I tell myself I am free
Got the chance of living just for me
No need to hurry home now that you're gone

Knife, cuts like a knife
How will I ever heal
I am so deeply wounded
Knife, cuts like a knife
You cut away the heart of my life

When I pretend, wear a smile to fool my dearest friends
I wonder if they know its just a show
I'm on a stage
Day and night I go through my charades
But how can I disguise
What's in my eyes?

Knife, cuts like a knife
How will I ever heal
I am so deeply wounded
Knife, cuts like a knife
You cut away the heart of my life

I tried and tried
Locking up the pain I feel inside
The pain of wanting you
Wanting you

Knife, cuts like a knife
How will I ever heal
I am so deeply wounded
Knife, cuts like a knife
You cut away the heart of my life

And in that moment, I realised how much I want Akif to survive, and the grief of wanting that. I realised how I wish things were different in so many ways, and the grief of wanting that.

The grief of wanting something I cannot have. The grief of living with something I cannot change.

May Allah give me guidance. HE is my only hope.

Monday, January 21, 2013

To Where You Are

There are times
I swear I know you're here
When I forget about my fears
Feeling you might hear
Watching over me
My hope sees what the future will bring
When you ride me in your wings
And take me where you are
Where you and I will breathe together once again
We'll be dancing in the moonlight just like we used to do
And you'll be smiling back at me
Only then will I be free
When I can be where you are

And I can see your face
Your kiss I still can taste
Not a memory erased
I see your star shining down on me
And I'd do anything if I could just be right there where you are

Where you and I will breathe together once again
We'll be dancing in the moonlight like we used to do
And you'll be smiling back at me
Only then will I be free
Then I will be free
So take me where you are

There are times when selfishly
I wish that you were here with me
So I can wipe the tears from your eyes and make you see
That every night while you are dreaming
I am here to guard you from afar
And anytime I feel your love
I close my eyes and dream of where you are...

I still believe
I have got to believe
That I will touch you that sweet day
That you'll take me there...

Tuesday, January 15, 2013

Akif's Journey against Hydrops - Week 31

My dearest Akif,

On the 14th, Mama and Bonda went for your 2nd ultrasound. Bonda is always in tears when he sees you on the special monitor. Maybe because as a doctor she immediately sees and understands the true extent of the uphill battle that you face. She breathes slowly in and out and blinks it away.

You have pericardial effusion, a bit of pleural effusion, facial edema and ascites. Water everywhere in your body.

Dr. Sofea informed Mama and Bonda that the results of the tests came back and they were all negative. There is nothing wrong with Mama, infection or otherwise to have caused all the water to build up. And you are not suffering from any chromosomal abnormalities either. So if it was not for the water, you would have been a perfectly normal baby Akif.

Since they don't know what's wrong with you Akif, they can't fix it. They will just have to wait and see if the water goes away, or wait and see if you pass away while still in Mama's tummy.

All that mama saw was how strong your heartbeat was. You were fighting with all your might to stay alive.

If you make it until the 34th week, they will take you out of Mama's tummy and try to save you then. That is 3 weeks away. That is the plan. Logically and medically, your chances of survival are very very poor.

This is hard for everyone in the family. And yet, Mama finds it difficult to describe how Mama feels. Mama bears a burden no one else in the family can carry, not even your abah. You are inside me, you are mine. Your heart beats through me.

As a mother, isn't it Mama's job to fix things for you and your brother Airiel? That is what Mama has been doing for your big brother Airiel all these years, especially since Abah works far far away. But Mama cannot fix you Akif, there is nothing that Mama can do to make the water go away. There is truly nothing worse for a mother to not be able to make things better for their child, and that is how Mama feels.

Mama is praying tons and tons for you to get better. Mama is praying tons and tons for Allah to decide what is best for you, to ease your suffering. For the family to be strong no matter what happens.

Mama will see you again on the 30th where the doctors will decide how to proceed.

So long as you are fighting, Mama will fight with you. No matter what the outcome is.

Sunday, January 13, 2013

Donate A Book Anyone?

Hello Everyone,

Have books you have already read and are in good condition?

Want to clear your shelves and make way for new books?

I finally found an organisation which can come and collect my books and ensure that it is donated for the right causes to the right people. Meet the Weekenders...

You can contact them at their facebook page:-

They are currently working hand in hand with Yayasan Salam for a mini library project for the Org Asli in Serendah.

Maybe other upcoming projects can include your books!

Have a good week ahead. 

Thursday, January 10, 2013

Boycotting Israeli Products [Progress Update 3]

Hi readers,

Just wanted to share with you the milestones reached by the BDS (Boycott, Divestments and Sanctions) movement for 2012. They are gaining momentum hand over fist!



  • US singer/songwriter Cat Power canceled her performance in Israel.
  • In Canada, the University of Regina’s student body adopted a BDS motion “as a means of pressuring Israel to comply with international and human rights law.”
  • US jazz vocalist Cassandra Wilson canceled her performance in Holon. She announced, “as a human rights activist, I identify with the cultural boycott of Israel.”
  • Israeli cosmetics company Ahava — which pillages resources from the Dead Sea in the occupied West Bank, and produces the cosmetics in an illegal settlement colony while labeling them as “made in Israel” — was de-shelved across Japan. DaitoCrea, the Japanese distributor for Ahava’s cosmetics line, announced that they would immediately stop carrying Ahava products because of that company’s fraudulent labeling policy.
  • A judge threw out a lawsuit by Israel lobby group against Olympia Food Co-op in Washington, US, protecting the co-op’s decision not to carry Israeli products and uphold the boycott.











This is taken from here.

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