Thantophobia

"What I need is the dandelion in the spring. The bright yellow that means rebirth instead of destruction. The promise that life can go on, no matter how bad our losses. That it can be good again..." ~ Suzanne Collins

For some it is a phobia. For Mama it was a reality, angel Akif. Today is your birthday. Today is the day you left Mama and Airiel 4 years ago. Thank you for teaching me how to survive loving and losing. Thank you for the permanent scars on my body I now carry with me everywhere in memory of you. Thank you for hugging and kissing me in my dreams. Thank you for teaching me that love hurts, and that's why it matters. Thank you for making me weak and then making me strong. Mama misses you so much. More than words can say. More than tears can ever convey. May you be blessed kid. Al-Fatihah

My beloved Akif - 3 years on

"This is a love story. I never knew there were so many kinds of love or that love could make people do so many things. I never knew there were so many different ways to say goodbye..." ~ Maggie Stiefvater

In the name of Allah, the Beneficent, the Most Merciful.

Yesterday, my angel Akif would have been 3, had he been here with me and Airiel.

I share the chronicles of my struggle so that mothers who have lost their child, either due to hydrops or in any other way, know that they are not alone. 

I tell this story so that all mothers know that as mothers you can bleed with all that gaping wound the child you lost have left in his/her wake, but also in that grief and pain you bleed, you can bleed love and grace.

I am much much better 3 years on. Most days I function great. Being busy does really help. And I think its important that as mothers/fathers who are struggling from the loss of their child busy themselves.

It is more of the triggers that usually get to me, like that sofa seat in Dr. Cafe in Citta Mall facing the window where I would always sit at in the mornings (having been away from work for 4 months) counting heartbeats to make sure that Akif was alive for another day. Like that white honda car (Stevie, I call it) which I drove to the hospital with Nenda in the passenger seat and Airiel on her lap, she was crying all the way to the hospital. I sold the car after that, I just couldn't bear the flashbacks. Like that moment, half awake in surgery I knew the doctors took Akif out of me and I could not hear a cry. Like when I see another baby wearing that exact baby shirt I bought for him which I eventually gave away. Like when I accidentally see one of my flowy tops I kept in my closet which I would wear all the time while I was carrying him (3 years on and I still can't bear throwing it out, sigh - will do it soon). Like that moment when Bonda told me that Atok carried Akif on his lap all the way to the cemetery. Like the moment I got discharged from the hospital and they gave me Akif's dead body tag, morgue tag and his post-natal ICU ward tag which they put on him while he was fighting for his life.

The list is endless..

So I will be going about my normal day, and I would see certain things that triggers the memory and everything will play out like a 3D movie screening, and I would be reeling from it. It feels like a stab sometimes, most times like a punch to the chest, where you have all the wind knocked out of you. Yes, pretty much like that.

I do not know the 5 stages of grief, or where I am at with it, or whether I would ever be out of it. I do not know what is normal or considered normal. This is my normal, and I am happy with that. 

I realise that family support is extremely important, but while it helps, only I can deal with my grief and help myself out of it. My family have thankfully and mercifully (I might add), left me alone to deal at the times they know I am not up to being pleasant. Sometimes I forget that while I have lost a son, Bonda has lost her nephew, that Nenda and Atok have lost their grandson, that I suffer yes, but so do they, and they feel a pain which I know not of. 

The recovery is ongoing, but I am thankful for what I do have (on most days).

Deep down in my heart I have a regret that all mothers have, that wish that there was something more they could have done, that maybe if I tried harder, I could have saved him, that maybe if I did something different, things would not turn out the way it did. I am only human, sigh.

Some pain and experiences in our lives dulls us, numbs us. But Akif, he CHANGED me. And I was never the same since.

You made me strong angel child. You made me understand how it feels to yearn for someone, how to fight for something you believe in. You made me understand the power and will within us, and that there are powers which are beyond. You made me understand hope. You made me understand pain and overcome it. You made me understand...

You made me understand love, and how sometimes to love means to let go.

And I love you so. And so I let you go.

Follow Akif's journey here.

Much love from Airiel and I.

Peace and love to everyone.

The Turn I Cannot Seem to Make

"There's a moment when love makes you believe in death for the first time. You recognise the ones whose loss, even contemplated, you'll carry forever, like a sleeping child. All grief, anyone's grief... is the weight of a sleeping child..." ~ Anne Micheals

Ever since February, 2nd 2015. I have not been able to go back.

There are days when I go to work or come back from work and I will tell myself  'Today, I'll go visit him. Today I am strong enough...'. And then as I near that fork in the road that would lead to where he is, I just can't seem to go into the junction. 

My brain freezes, my hands sweat, my stomach churns, my vision blurs. My heart...it just breaks. And I drive on. Always looking at that junction from my rear-view mirror as it fades away.

I can't do it. I just can't do it.

And then, I will spend the rest of the day asking myself 'What is wrong with me? I used to be able to do this, easy peasy. It's nothing more than a grave..'. And I will miss him for the rest of  the day. An ache that never dulls.

I was always kidding myself. It never was easy to go there. But these days, it just seems so much harder.

It's like I am damned if I go, and I am damned if I don't.

2 years on and yet the struggle is ever present.

The struggle for sanity. To overcome grief. To function normally.

It is a daily battle. As a mother who has lost a child, it is a daily battle.

I miss him so very much. Some days, more than I can bear it. 

It brings me to my knees, knocks out the strength in me.

Gugur semangatku mengharung dunia.

I will never forget the moment his heart stopped, and mine kept on beating.

 

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.

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.

Hydrops Fetalis Support Group

Hi Everyone,

Time has been passing really slowly these days. I am waiting for the results conducted on the blood they took from me and the amnio they took the other day.

Ultrasound is fixed on the 14th, so I will only know what to do next from there.

Between that time, I am just enjoying the time I have with Akif, feeling his kicks, talking to him. We share a bond no one else can share. He is inside me after all. Airiel also refers to him as 'Ultraman kecik' these days. Aries remains optimistic and I decided not to pursue the issue further with him when one day he made a statement that was closest to his true feelings, which I can rarely gauge most of the time. He said 'kalau asyik fikir, abah boleh jadi gila'. I have to let him deal with his grief in his own way and be supportive. He has been really supportive to the extent he knows how, at least.

I have joined support groups for parents who have gone through this, some more than once and they have been really supportive.

For those parents who are in search of a support group for this condition, I list the links on facebook below.

https://www.facebook.com/groups/hydropsfetalissupportgroup/

https://www.facebook.com/groups/34604235895/

Thank you everyone for being so supportive. It really means a lot to us as a family.

I will post progress on Akif's journey as soon as there are any updates.