From sanity.. to insanity ..and back

It has been a long run

From sanity.. to insanity ..and back

It happens with me every day now
The absolute power of the unknown to destroy me
And something hale and hearty within me which stops it

Sum of it all

It does not go

Whatever I say and whatever I do

This feeling does not go..and sometimes feigning that its gone...hurts and tires me more
So I would let it be

And cry..and break in my solitude..I dont have to keep myself strong always

I remember that day of knowing the diagnosis
It was not told to me right away that his blood has been sent for sampling for down syndrome, all around me knew it(Now I thank God that they hid it, cos my initial days were anyways gloomy. I was scared of so many things that if I had known this, I would not have been able to survive nor would Aaru)

It was 18th August, 2014, I walked into pediatrician's room for general check up and some vaccination. Aaru cried a bit and so did I(can not explain how tears flew down my cheeks when he cried for a vaccine injection, I was never such a soft person) and then doc said all looks well but I have not yer got reports for THAT blood test

I had heard it a couple of times by then, he kept mentioning in our earlier visits but I never paidn attention as husband never paid.
But this time I asked "But what is THAT report?"
He said "For down syndrome"

I froze

And my gut knew its true. I have no idea but the moment he said it, I knew..till then I had not double guessed anything could be wrong..but that minute I knew

Yet I started cross questioning him, as if my cross questioning would make it go away.."why would you think so"
He says " Siemen line on his palm, sandle gap in his toes, slanting eyes"
I kept staring at Aaru, but I could hear pieces of me falling around

Yet no tears, nothing outrageous
I asked where I could get the reports, he said downstairs

Husband has been avoiding it all the time. Each time the doc raised question about the report I would ask him later what that report was and he would say must be ECHO etc etc, but all those were clear long back so I have no idea why he dint even want to check the report?He could have not told me yet got to know the report.

Maybe he wanted to get out of India before the catastrophe fell and dint have to deal with a mad and sorrowful woman and list of activities which ensued once we knew the diagnosis

We went down to get the report, my heart in pieces while husband was being comical, not appreciated in anyway by me

I grabbed and opened and read "Positive", it was the fish report
No tears, nothing.

We came up and the doc very stoically said "So its positive, but the report which would make it 100% would come through karyotyping which was supposed to take another week".
I had no doubt that my baby had down syndrome, yet the husband kept asking some inane questions and I could not meet the eyes of my 18 days old son. I could not gather the courage to look at him. I dont know why I felt I had wronged him.

Husband got engaged in some birth certificate etc while I sat there, my baby wrapped in a yellow wrap sleeping beautifully. I looked at all the babies around and felt strange tinge of pain, lonelieness, envy...yet my love for this boy was not in question.

I asked husband to stop all the talking and rush home, I could not bear to be in that hospital another moment...I needed my mom, my home, my comfort.
While in car, I held Aaaru and silently cried looking out of the window. No way could I show my tears to anyone, not even husband, Cos he really seemed very detached and being with him made me feel lonelier. He sensed I was crying and all he did was patted my arms twice.

In all these years of my existence that was the first time I recall I wanted to break, just let go. And I wanted him to understand that and hold me and be broken himself. I dint want his strength , I wanted someone to feel the pain in exact measures as I felt, a party to my shattering soul, a companion in my misery. And I wanted that person to be just him, noone else. Cos he was the father , an equal in our love for Aaru
But not a squeak from him!

We reached home, the message had been sent to my sis and she was coming over. Mom dint know but she saw my face and guessed and I told her in plain words.

Husband went into the other room and I left Aaru with ma, I really wanted to know what he felt, what was our plan, wanted him to tell me it will be alright that our son will still be the best thing to have happened to us.
I went to the other room to check whats keeping him busy, he was on his laptop, I eagerly asked him what was he up-to hoping he would tell me he is gathering some information on how to deal with this all. But he said I have to submit this timesheet as its Friday!
And that moment I knew, this will be my fight..all alone..and without a word I came back to my room

The days and months after that were a haze of research, night outs, buying toys to stimulate his brain, finding which therapies he can go to, what tests to be done, all this with no help from doctors or anyone else

It hasnt been easy to say the least but I have loved every moment of it, of finding  my way through the mess.

Every single thing I learn I try it on him, new supplement, new therapy and see him change and evolve with it

We are growing each day, each minute..Aaru and I..Aaru in all his loveliness and I basking in his glory!

But some days, the memory of pain hovers over me, wringing everything inside out

Marriage...yet again

Marriage can be an enriching or a debilitating experience

Before you realize what it is..it gets too late
Then you are left trying to find a balance between the 2 extremes

But that can never be done..not a possibility for a human with passions

If you have passion for yourself, you would find the debilitating in something which is not enriching
You would find disaster in something which is stereotypical
You would find doom in something which is moderately OK

Who is to be blamed, what is to be done?

you are my home

I snuggle upto him on days my heart is too withered
He pulls my hair..gives his 2 teeth bite as an approximation of kiss

I smell him and he smells of the home within me
His small frail body sings back lullabies to me..
The only place I feel safe is his round tummy

I have come to believe this one thing
that you dont need me so much baby..as much I do

You are simply complete in yourself
Its the eroded me which seeks to be mended in your beauty

Ways I love you

She -  I never ever loved you..so how dare you ..and pin me down for it?

He -> Cos you are all that love is for me..mysterious, beautiful, unreachable and precious

She -> I might have deceived myself or you ..but I could never love anyone like you

He -> I am sorry..but I got my notions of love from you

 She -> You would get hurt

He -> Thats what love is meant to do to you

Dil se re...dil se re

Fighter

There is this serial I used to watch "Revenge" on star plus
Its the story of a woman whose father was falsely executed and died, when she was very small and she grows up to fight with the very powerful people who were responsible for that.

Though a far fetched story yet riveting and there were few scenes and dialogues which made it worth a watch. I specially liked the  protagonist , she carried the role to perfection

In that the father later comes back, he was not dead but for 18 years he faked his death and was in the hiding.

Towards the end there is a scene where father finds out he has terminal cancer and tells the daughter.

She is heart broken but keeps giving solutions or ways to fight it, she says we can do dialysis, chemo, hormone therapy, we can go to the best of the best..this will not last..you will survive

While the father knows its the end

But he just looks at her, she has tears flowing yet acting strong and suggesting remedies, and he says "Where did you learn to fight so much?"

On that dialogue somewhere something stung in me, it was as if he was talking to me, it was as if all these months of my struggle I wanted someone to say that to me...
All those months post diagnosis of my son's down syndrome, I hardly cried in front of anyone

I used that energy to read, read, read..search ..google..there has to be a way
There has to be a way to get my son out of this...to give him what he needs..to make him functional

I had so many fears..which Aaru is proving wrong one by one..and I am so so glad

But those nights till 1 Am, I spent checking on the net, and I still do...that has become the center of my life

And in all this I was very alone, not alone in terms of people around me, but absolutely no idea or help..I have always been the kind who hardly shared the worst of worst in her life with anyone..till things got really really ugly..I always felt I could fight it on my own

And amidst all this, I never knew I wanted a single soul to tell me..where did you learn to fight so much!

The gynae appointment and next few days

After hearing about possibility of 1 in 10 of a child with DS from anamoly scan, I visited my gynae at the fag end of the day

Dont know what I expected, maybe some miraculous wordsm but what she said went in haze for me

She started preaching me on what a child with DS can have a life, and asked if I wished to confirm it

I said what if I wish to have the child any which way?

She said - Then dont get this expensive test done, if your decision is made, go ahead

I came back so quiet, my mother was also quiet. It was just the 2 of us(its mostly just the 2 of us)

When there is too much happening inside you, and noone to actually blame for it, you go in a shell

When we reached home, it was late, and by then I had a plan...I wanted to get a 2nd opinion as anamoly scnas are not a 100% diagnosis. With that in mind, I felt lighter and thought of telling it to the husband

I called him on face time pretty late and told him whatever happened in the scan and that I wanted to get a 2nd opinion.

His exact words said with a very sheepish, guilty face " meri maano to test kara lo, you should learn and read about DS more and understand what a life with such a child can be. You should take an informed decision"

INFORMED DECISION!

When people say such amalagm of words which sound politically right yet dont make any sense, I shut down completely.

What does that mean, that I either abort, or continu pregnancy in distrubed state of mind?? Cos nothing can be done about DS in the womb!

Basically these words were just a disguise to tell me to end it

But I ended the call, telling him that it was a mistake to call him

After that I knew that thic child and my destiny are together. I am the sole person to decide on pregnancy, and also whatever follows after delivery(if the baby has DS). But in none of it, ending the pregnancy was a choice

After that days went in a haze

There is a much proclaimed scan center in bangalore where getting an apoointment is a pain

My borther in law stood in line at 6 Am the next day to get it, I got the appointment on the same day at 1 PM, I took half a day from office and reached the center on my own while my sister and mother came there to join me

I waited in a zoned state and held on to my gut when the doc started it, my husband is in healthcare and somehow got contact of this doctor and the doc already knew me and my trepiditions when I went to him

He vehemently rubbished all the soft markers(be it the nose, or the feet ) which actually came true(yet DS)

I heaved a sigh of relief and went about pregnancy happier.

When Aaru, Araadhya was born and 9.34 AM on a wednesday morning on 30th July 2014, I heard my gynae shout "Its a boy", my husband cut the umbilical chord and brought him to me and one look at his gorgeous face and the all my remaining fears were gone

I kissed his forehead and happiness spread like a drug in my blood

I felt so so so proud

During my 6 hours of recovery, I was dying to go out and see my people. To feel the shared happiness. To live this pride with them

I was restless and called upon nurse so many times to ask when can I be released