Where are you?

Dear Dayani,

Where are you my baby? It's been too long since I last saw your face and held you in my arms. I miss you... I miss you...

Dayani. Dayani. Dayani. Dayani. Dayu where are you? Mommy misses you!!!!

Were you scared?

Dear Dayani,

It's been a while since my last letter. How are you? Are you happy? Are your Oppungs taking care of you well?  I pray every night that you are happy there in heaven.

Ishan is doing well, as I am sure you know. He says your name so casually all the time. I wonder if he knows that my heart stopped beating for a split second everytime he says Dayani. Your Appa and I are doing fine. We are working through things and Life is a little bit easier to bear each day... You are always in my thoughts. Unfortunately these thoughts come with a lot of sadness still. I am sorry baby... I can't seem to shake it. I am still sad that you are not here. 

One question weighs heavy on my mind today, two actually, so please indulge me. Were you scared when Appa put you in the crematory? If you were, I apologize for not warning you, that I didn't tell you to not be scared of the fire when I last kissed your cheeks. Can you forgive me?

All that morning, I had been thinking that I should tell you to be brave but I believe I had forgotten. I can see that last moment as if it happened yesterday. After saying our goodbyes for the last time and letting others say theirs, your Appa cradled your basket and walked a couple of steps to the crematory. He didn't want us to do it together... He then closed the door and pushed several buttons to start the cremation process. He didn't turn around, not even for a second so I could see the hurt in his eyes. Later he told me as he put you in the crematory he felt the fire on his skin and he realized that he was putting you in a place that would scare you. He felt terrible but it was too late to back out. There was no way out of the situation.. I can't imagine how horrible he must've felt. He is quite brave your Appa. You should be proud.

I know you are a brave and courageous girl and you probably don't care about the antics that we, who you left behind do to take care of your physical remains.. But I would appreciate it if you would please let me know if you were scared. If you were, would you please forgive us for not warning you, for putting you in the crematory in the first place? 

All my love, always,

Mommy

Loss

You cannot describe loss, you can only feel it..

Two months since Dayani left

Dayani and Mom taken on Nov 22nd, 2014.

Dear Dayani,
Tomorrow will be exactly two months since you left us. If you ask me how I am doing at this moment, I would say I really don't know. It's one of the darkest, if not the darkest, time of my life. Yet it is also the most beautiful. It's like a night sky full of stars and you, my daughter is the brightest of them all.

I have never felt so alive... I can feel every emotion and sensation. What I used to see as people are now souls, and each are tied to others through love. Every woman is someone's mother, sister. wife, girlfriend or best friend. Every man is someone's father, brother, husband, boyfriend or best friend. I see things differently now... Where there is death, there is also birth, where there is pain, there's also joy, where there is happiness there is also sadness...There is a beauty in everything. My heart feels heavy and empty at the same time.

I also realize now that I am not in control. Sure, I can plan but the ultimate decisions as to whether or not they will be done are not in hands. The first time I realize this truth was on the day of your birth: when the Neonatalogist yelled out that you were not going to make it a couple of minutes after you were born, when my heart ripped open seeing you in the NICU for the first time, when the transport team wheeled you into my room before taking you away to All Children's. I was so helpless! I wept and wailed when I saw you in your little incubator, bundled in a dark navy blanket with all the tubes hooked up to your body ready for your transfer. One of the transporters handed me a teddy bear to hold which I continued holding every night since for one month. I thought surely the whole world would have heard my primal scream.  Oh how I wish you know how I felt! Why the earth didn't split open and swallow me whole at that time, I don't know... It would not have surprised me one bit if it did. It's incomprehensible that I am still here today. 

I cried so much for you Dayani. Ever since when you were in my belly, starting around the 14 weeks of the pregnancy when they told me that you have 1:15 chance of being a down-syndrome baby, and then the medical jargons got more and more advanced from there... I have cried for you. I realize now that it did not / does not change anything, that it is the price I must pay for this love that cannot be severed, even by death. There was no vow between us that put such condition to the bond. There is me and there is you, and that's all. I am always your mommy and you are my daughter. Doesn't matter how long, how far, what age, this is the fact.

Dayu, I have something to tell you and I hope you are not upset... Your Appa and I had been talking on and off about giving Ishan and you another sibling. But we could not decide one way or another because we were so scared to lose another child. So we said we'd think about it and leave it open ended. This was last month..  Last weekend, we had a little incident which may make the decision for us. Things happened truly by accident and I will never laugh again when a parent said a baby wasn't planned. It made us realize that we do want to have more children after all... So now we'll wait and see if there is any good news. Even though your Appa and I are emotionally doing better and not as scared (not because we are cocky but because we realize now that life and death are not in our control), I worry that I am not physically healthy enough to carry a baby even though the OB said that internally everything looks good. Pray with us, baby.

Hope you had fun chasing the clouds today. Give your oppungs a hug from me.
With love, always,
Your mom

If you don't see her

This post is dedicated to certain friends and family.

My friend,

I know you know I have a daughter. And I know you know that she has passed away. As someone who is or was close to my heart I thought you would express your condolences, care and concerns. But you have barely even said a word about her... Not even a "sorry for your loss". So I tell you what. If you don't see my daughter, then you have no place in my world. If you don't acknowledge her presence then I don't see how I can ever acknowledge yours. 

My daughter is around. She is in the air that I breathe, she kisses my cheeks through the wind, she talks to me through the silent whispers that only I can hear, and most importantly she is always on my heart. Just because she died, it doesn't mean she is gone. Yes, we may not see her physical being but she is around. I know that and others that matter know that too. And obviously you don't matter, anymore.

Friend, we can't go back to the way things were anymore. If you are not there for me through my pain then there is no reason for you to be there for my happiness. We can't have regular talk if we avoid the hard stuffs.

So I bid you goodbye. The next time we talk, I would smile and exchange pleasantries but you'll never feel my care anymore, and it's all because you never cared enough to care...

Sincerely,

-D

What grief looks like

Dayani's Balloon's today.

What Grief Looks Like

By yours truly
My grief is clothed in pitch black.
Her hair unkempt and hasn't been washed for weeks.
Her face puffy from all the crying.
Her voice hoarse from all the screaming.
She has blood on her hands
She raises her palms up while whispering my daughter, my daughter.

She looks quite dirty, messy and weak.
But I can't turn my back on her.
For I know her.
I know who she is.
We've met twice.
She took on slightly different forms then, but I recognize her still.

I see her clearly from the corner of my eyes.
No amount of ignoring is going to make her disappear.
She follows me around in the shadows.

She cackles when I cry.
She mocks at me when I am calm.
She spits and rages when I bow my head in prayers.
She screams profanities when I beg for comfort and peace.
And she wouldn't stop whispering Dayani, Dayani.

But she doesn't always disagree with me.

We are completely on the same page when it comes to Fear.
She even feeds me more by whispering Ishan, Ishan.
We are very much together in Anger.
She would stand proudly next to me when I curse.
When I flagellate myself with Guilt, she knows I deserve it.
Her cries are my cries.She is the only one who understands me.

I can't turn my back on her.
You see I know her.
I know what she needs.

So today, I am going to open my arms wide and let her in.
I am going to let her come alive.
I will acknowledge her truth.
I will hold her hands and look into her eyes.
I am going to let her cup my face.
I will touch her cheeks tenderly and ask her to tell me everything.
Everything that ails her.
And I will embrace her.
I will listen to her, this time compassionately...

I will then draw her bath and comb her hair.
I will bundle her in soft fluffy towels.
I will clothe her in brightness and make sure she smells nice.
I will feed her warmth to soothe her soul.
All the while I will listen to all her stories...

I will let her stay with me.
We will share the same space.
We will hold hands, laugh and cry together.
For we are actually old friends.

I know soon she will feel better and she will leave me.
I know this time, just like before, she will take her branding iron and plunge it into my skin.
I know it will hurt but I am going to let her.
So she can bid me farewell in peace.
And so we can become one again.
For you see, she is actually me.

HAPPY 2 MONTHS OLD, DAYANI!

A peek is all I'm asking...

A Peek Into Heaven
by Callie Sanders Thornton

Just one little peek into heaven,
Is all I'm asking for today.

I just want to know how she's doing,
And heaven seems so far away.

Is she playing on the clouds with angels?
Is she laughing and running today?
Does she miss me?
I guess only she knows.

Oh why does heaven seem so far away?

If you just let me look for a moment,
To catch a glimpse of her sweet smiling face,
I promise I won't try to take her,
I know, she's in a better place.

Just one little peek into heaven,
Is all I'm asking for today.
I just want to know how she's doing,
And heaven seems so far away...

Would've been eight weeks old

My dearest Dayani,
You would have been exactly eight weeks old today - Sunday 1/11. This would've been the day that we let people come over to visit you at home since you would've gotten your first set of immunization already (though I am not sure if for preemie this timeline would be adjusted based on the GA at birth).

Today is also exactly seven weeks since you left this earth. I cannot sufficiently describe how I went through the days since or what I did to survive them. What I remember the most are the feelings. Everything was so raw and on the surface. I felt such complex emotions; the helplessness that stemmed from the trauma of losing you, the gratefulness for your birth, all the blessings around you, and the people and the knowledge that you've brought into our lives, the fear- the fear of losing Ishan and your Appa, the fear that I am now going to suffer for the rest of my life, the fear that God is out to get me, the fear of the future because now I've seen many sufferings (not just my own but also others who are walking on this same path), and Anger. Let's not forget about Anger... I can tell you a hundred different things and people that angered me but bottom line I was/am angry that you are not here. Period.

Physically I felt some deterioration. To name a few, I had heart palpitations, cold and coughing that do not seem to go away, increased blood pressure, and extra sensitive ears- every sound seemed too loud! I began to wonder if my time on this earth was up too...

But now seven weeks in I don't feel so raw anymore. I am starting to get bits of clarity and want for some healing. This week started out with a couple routine appointments with my OB/GYN and dentist. I spend my days at home reading books that help me navigate this loss, cooking, watching TV, write in this blog, picking up Ishan from daycare, trying to function amid my grief. But on Thursday, Friday and Saturday my emotions went up a notch and it was overwhelming! I think the shock that protected my brain, which allowed me to function since you were gone, is starting to wear off. Like a veil, it is being slowly lifted.

I couldn't stop my heart from whispering your name, and the million shattered pieces of my heart broke a little each time.

I am starting to realize that you are not coming back. That you are really not here. That I cannot see you or touch you no matter how hard I try... My heart didn't want to absorb this reality and was screaming in fierce rage as the realization starting to hit my consciousness, like a raindrop hitting the earth. I was fighting it... I couldn't accept it.

But today I am beginning to realize that nothing is going to change my reality. No amount of crying is going to bring you back to me. It hurts me to my core inner being to admit this, and even now I can feel my soul recoiled at the thought... But if I am to heal I have to accept this reality so we can move forward with this life. It certainly doesn't mean I will forget you. (How can I? Every parent thinks about their child all the time. Death doesn't change that). It just means that we, as a family, get to live our lives that include you and the sadness from losing you but not being paralyzed by it. Your loss does not define us. Your life will be celebrated and purposeful. Your Appa and I will make sure that...

Every night I ask that God keeps you happy wherever you are and that you are not crying for anything or anyone of us. Heaven must be nice, otherwise you'd have been back here in my arms... That's how it works, doesn't it?

Whenever you get a chance, I would appreciate if you could send me a sign that lets me know you are ok. Even though Appa had reminded me about the three Chinese lanterns we saw in the sky when we did the first balloon release for you, I'd really like something more concrete and unmistakably yours from time to time. Can you do that?

With all my love, always. Hugs and kisses,
Your mom

Anger unleashed

I never thought I would experience Anger (one of the 5 stages of grief) so intensely. But here I am spewing it out. Sure, I had expected to feel some anger, but am usually quick to count my blessings so I don't dwell on Anger. But tonight I can't bear it anymore. I need to let it out so I can move on with my grief.

I am so fed up with people asking me what I am doing at home all day given that I am on maternity leave. Unless this is a roundabout way of asking if I am available for tea or a chat then this question is quite insensitive. Let me explain...

1. I delivered my daughter, Dayani 7 weeks ago. My husband and I commuted 100 miles everyday since the day after she was born to see her in the hospital. We stood by her side for hours singing nursery songs, talking and playing with her, dealing with everything that comes with having a baby in NICU, and trying to make sense of what was happening amidst all the medical jargons that in the end basically mean "no hope, no cure". Our 3 yr old son and quite a few friends came to spend time with her on some of those days. Dayani died one week later.


2. After Dayani passed away we had to make phone calls to several funeral homes to find one that was willing to work with us, to follow our terms. Have you ever tried telling strangers whose goal is to sell you funeral/cremation packages that your daughter just died and the world as you knew it was over?


3. We then went to craft stores looking for a wicker basket to put her body in for cremation (under the watchful eyes of unassuming strangers and unhelpful sales people), had her cremated, brought the small urn containing her ashes home (the only physical part of her that ever came home), and two weeks later let her ashes go into the ocean.

In between I had to continue living (whatever that means...). I spend time my son who keeps talking about his baby sister whom he no longer sees, and family and friends who are there for us. Inside, I am spent, drained, exhausted and grieving... Had I been a mother with a wailing newborn baby in my arms, would you still ask me what I was doing all day while on maternity leave?

People seem to forget that I had just physically given birth. The postpartum bleeding, the breast milk which I had to painfully stop, the hormonal changes, the fatigue and the soreness, I had to experience all that even though the baby had died. So I rest from time to time to give my body a chance to recuperate. All the above plus grieving, which is by far the heaviest burden of all, take up a lot of time!!

So, in case you are wondering, no I am not in bed all day. I am actually functioning. I went to see my dentist two weeks ago, got my hair cut, shop for grocery, cook, play with son, spend time with friends, reach out for help, read books on baby loss and grief, sleep, eat, shower and cry whenever the realization that my daughter is no longer here hits me (which is almost all the time!). It doesn't help that the flu season is in full swing and all of us in the house are plagued by a cold that doesn't seem to go away. So unless you are coming over to lend me a shoulder to cry on, do not ask me what I am doing all day while on this maternity leave.

Here are examples of an asinine comment slash question that always get on my nerves. So you DID see something wrong with the baby earlier in the pregnancy?!" Or "What caused this you think?

What is the point of this comment/ question or any variation of it? I do not know... But to answer it, yes we did. Dayani had thicker neck fold at 13 weeks (by a slight margin), and rocker bottom and sandal gap toe on her left foot. These are all markers for multiple chromosomal disorders. However the results of Panorama, Amniocentesis, Micro array tests came back clean contradicting all the physical signs. There was nothing to do for us at that point other than hoped for the best...

So if you think we saw her death coming but chose to act all heroic carrying the baby through the pregnancy so we can experience this bitter end then F$&K YOU! What we saw was a our baby girl who may need a surgery or therapy to fix her foot later in life. We saw a fixable deformity. You can call us naive but hopeful would have been more appropriate. Given the tests came back negative, we had no reason to think that there was something that the medical field could not fix. We were blissfully ignorant.

However, if you are asking the question because you are doing some kind of postmortem on my loss, so you can avoid the same thing from happening to you in the future, please GET A LIFE! There is no way to prepare for this horrific situation. If you know me at all, you'd know that I am a planner, a very organized and a meticulous one at that. If there was any way to plan for a loss of a baby I would have done it. I have lost both my parents so I know what a loss is - or so I thought. So spare yourself the trouble. I am already asking a lot of questions on my own, I don't need yours.

I was one of those people who thought that the average parents don't lose their children and that I was part of that stats. Well guess what? You never know which side of the numbers you are in and it changes from time to time. Nothing in life is permanent or guaranteed. Being good or doing good does not mean you get a pass from life's hardships. Now that I've walked on this path I see others who are also on the same or similar journey as I am. These people are around us! They could be your colleague, your boss, the lady at Publix checkout counter, your OB, your nurse, anyone! This loss is not as uncommon as I previously thought. So enjoy life and love everyone. I pray that you never have to go through what I'm going through.

Oh please don't tell me you understand how I feel unless you have lost a baby yourself.

And one more thing, STOP telling me to be grateful for my son and my husband. I know that! Not a day goes by that I am not thankful for them, but that doesn't negate the loss of my daughter. I love both my children very much. They are both my life's blessings, my strengths and teachers. To say I should draw my strength only from my son is an insult to my daughter's memory. She may be dead but she is teaching me many things about life and love, and I am still learning. So save it!

I am glad I let that out. Thanks for letting me vent.

Goodnight Ishan

Tonight, as usual, my little 3yr old son comes over to say goodnight. But this time there were few extra words that merit a post. Here's an excerpt of the exchange while I held him in my arms.

Ishan: Good night mommy

Me: Good night Ishan, I love you (in voice that's affected by cough and sore throat)

Ishan: I love you too... Mommy are you sad? 

Me: No, it's just my sore throat. (Honest answer. I have no problem admitting sadness when he sees me cry, but that's another conversation for another post)

Ishan: I'm not going anywhere mommy 

Me: I don't want you to...

We then proceeded with the usual good night, kisses, hugs and see you tomorrows..

Why are these words so important, you may ask? Well, you see there's nothing like a loss of a child to make you realize how precious your family is, especially your living children, if you have them.

For the past 6 weeks I have been worrying a lot about Ishan. It doesn't help that he had a cold a couple of weeks ago and still has the sniffles and coughs. I was/am fearful...  Now it's possible that Ishan meant Bed when he said he wasn't going anywhere but I'll take what I can. You can say I was grasping and that's ok. But to hear him say those words tonight brings a lot of comfort to my soul and that's all that matters. Did I mention he just turned 3 in November?

Thank you Ishan. XOXO.

Reasons to smile - Blessings

If you know the burden we bear, you'd wonder why I smile. How I could even muster one, after all the baby died only 6 weeks ago (has it only been 6 weeks?). Well truth be told I hadn't stopped smiling. There are days when it was far and few in between but it was there...

I truly believe there are blessings in every trial. Even in something as mind-numbingly-earth-shattering as the loss of a child.

Dayani's birth, the chance to hold her, know her physically and love on her for one whole week was a true blessing. I wouldn't trade it for the world! I can't! I won't! But if we are to talk about the land of the living, here are two of the most important reasons I smile...

(Ishan and Appa on January 3rd, 2015)

Ishan, if you are reading this you'd wonder why you and Appa are lying on a mattress on the floor of your bedroom. That story is coming... I've been meaning to write it but don't know where to start. So bear with me.

Why I decided to blog. An Introduction.

(The four of us together on November 22, 2014)

Why blog?

I asked myself this question many times. You see, I've always been an avid reader of blogs, particularly related to Indonesian and South Indian cooking. My husband told me I should start a blog on food and travel (especially since we travel quite extensively with our son since he was a baby) or perhaps on how I keep a sane life, with a career that I love (which often requires late night), a baby, and still manage to eat home cooked meals and get 7-8 hours sleep. But every time I thought about starting one, I stopped myself saying it would take too much time, and frankly I didn't think anyone would be interested to read it. It would be too embarrassing. Plus who would give a hoot about anything I have to say?

But today I have decided to start a blog with the goal to document our story for our 3 yr old son, Ishan and hope that others who happen to stumble upon this blog can relate to them and perhaps even find them useful. I used to worry a lot about loss of privacy in the social media, but now I see it as necessary in order to connect with others. I realize now that human connection is what makes the world go round, and that it is more important than worrying about who sees your photos or knows your real name...

The deciding moment for starting this blog actually happened 38 days ago. My husband and I had lost our daughter, Dayani, our second born, my little girl, Ishan's little sister on November 23rd, 2014. She was a 34-week preemie and was one week old when she passed away. She died from a fatal and rare condition called Fetal Akinesia syndrome. As a way to cope with the reality of having just given birth and being told that my daughter would not make it, I wrote to her everyday since the day after she was born. I wrote her letters in her baby book, letting her know my most intimate thoughts and feelings for her and what our family was going through. The world as I knew it was shattered into a million pieces... It was over...

It was during this vulnerable time that I realized  how much I wanted my son to know this part of our story well.  I want to write these things down for him while the details are still fresh because life is not guaranteed, memory fades and tomorrow may never come.

It is with these thoughts in mind that I started this blog. This blog is dedicated to my Ishan.