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I am not your mystery woman, I am not your muse..I am not your soulmate, just a passionate woman looking for her own peace of mind... Heart is a lonely hunter!!! "Within us there is someone who knows everything, wills everything, does everything better than we ourselves"~I guess this is Hermen Hesse

Saturday, March 19, 2016

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


2 comments:

SG said...

Heart wrenching story. No not a story. Real life incident. My heart is with you. God is great. He is on your side.

WomanInLove said...

Thanks SG for your kind words