My moments

I went to pick up Aaru from school the other day. I usually don't go, his nanny mostly picks and drops him.

Each time I go, I wait to see him like a lover waiting for a message from a beloved.

And the moment I see him!! If I say he is the dollop of light which falls in my world each time I see him, it wont be an over-the-top statement

Each time, that moment stands out. His gaze falls on me, and his whole face and body lights up. His body language changes to that of a loved, brat-ish little boy, who knows he is my hero. We both rush to each other.

Its so strange that in that moment, I don't see who brought him to me, I don't acknowledge if anyone is smiling at me, or trying to talk to me. Its just me and him, gleeful in each others presence(just like they show in movies that the whole world is a haze and you only see the one you want to see)

And this happens e.v.e.ry.t.i.m.e I go to his school. My Aha moment.

Isn't this what love is all about or supposed to be? Love means each time you see that person, even if if you stay with him/her, just a brief 2 hours of separation and you are again new to each other. The novelty of seeing each other never fading.

I have found that love in my child.

On another note: I was telling his teachers that he has been extremely cranky off late cos of introducing a new protocol of medicines. Been crying a lot for no reason, so in case this happened with them then they need not be alarmed.

Both his teachers looked at each other and said "Araadhya crying? We have never seen him cry even once! He even fell down and hurt his nose, he just made a sound but no tears! He gets angry and sometimes throws things but never cries."

And I said to myself "after all he is my son" and many men in my life had this issue with me that I never cried, that I was hard-hearted or something? I only cried alone, if I had to. And Aaru cries only when I am around, the one person he is safest with. (Though now after Aaru, I cry easily, as if something broke inside me which I held onto for years)

The first time someone said that to me (that he would like to see me cry just once) , I was reminded of this song by Enrique Iglesias "I dont know why , I dont know why, I love to see you cry"

On nights like these

On nights like these
When sleep eludes me

Cos Aaru has woken up..with his breathing issues
And after trying to fight his and my sleep

I give in and try to make use of it
I go to the hall and put on TV

And I hear a small squeak from the bedroom, which I hoped so much not to hear
I can not sit in the bedroom and stare vacantly at walls while he sleeps

So all I can do now is take him in my lap, pour out a glass of wine..and watch TV with him sleeping in my lap..as I cant take chances with him..or with myself

Such an odd pair we are..Aaru and I

All alone, yet strong and bellowing

And at this stage all I wish..I wish earnestly as I got to know God would not listen if you just  make a wish mechanically
You got to really ask for it, and mean it

So with all in me, I try to mean what I want

That I meet someone who loves Aaru (not me or my face)..as much or maybe even half of how much I love him and how much love he deserves

That there is someone who is capable enough to help us(not monetarily but in heart and actions, not in words!!!), who would take up some doc appointments while I lie in bed without a worry as I know there is someone else there who worries for him half of as much as I do (that would be enough I tell  you)

That there is someone who would learn how much of each supplements to give him, while I can spend an extra half an hour in bed, after spending sleepless night

Oh God! What I would do to get a person like that in my life....

To be or not to be

Is it possible not to exist for some days, as in choose a day in the week when you dont want to exist

Non-existence- Don't confuse it with being at home and lying around and not doing anything

Its like being wrapped in a vacuum bubble, where nothing changes, nothing in the world, the world thats mine

Aaru and I both, no therapies, no physical tasks, no supplements to worry about
And that day should not count at all in history, its not a day wasted

When the whole day I tire myself with thoughts of what next to do, what next to accomplish and I hit on a spot where I feel numb by the end of the day and just vaguely wonder..if only tomorrow did not come

But tomorow I want to exist, as tomorrow is the day I began my existence :)

Start light..star bright

This feeling to be close to nature is coming so strong these days
Don't know, if it has to do with my Aaru?

Its the fact that I want him to witness all things beautiful and grand in this life and universe
....and nature is the grandest of it all..
..the waterfalls, the butterfly-filled garden and most of it...STAR LIT SKY

I keep downloading nursery rhymes for him(I learnt so many cos of him and he is so addicted to me singing it to him) and there is this one which goes
"Star light, star bright,
The first star I see tonight
I wish I may, I wish I might,
Have the wish I wish tonight"

There is this panda opening a window, all big eyed and running out into the field, looking at start, climbing a ladder sky high to touch the stars, meeting birds on the way

I just found it so close to my heart, yet so out of reach..mysterious and shrouded in some memory from another life

I have seen the moon and stars lying on my back on my terrace and sleeping through the night on the terrace
Watching stars, tracing the question mark(constellation) and each time being overwhelmed by a sense of victory on finding it and also marveling at it

I wonder if I could give the same childhood to Aaru..I show him pictures of moon but struggle to show him real moon from the apartment

The nature in its richness and beauty is an answer to so many things, if only I could go close to it and experience the bliss

Rain, stars, sea, the roar..ocean ...beauty beauty beauty in abundance
Every single part of nature, has the capacity to take you away from mundane and the pain

I wish some day..some day soon...I could show the real stars to Aaru..which he so sweetly shows me with his hand movements

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

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

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

I want to write about my times
From the time i got to Know my son has down syndrome
Till today

I want to write each and every feeling of mine
Things I could not share with anyone..and sometimes even not with myself
I have to ..have to write it here...

Else there shall be no witness to my life
To my moments of complete randomness

So I shall write..one at a time
Each day..each moment...

Tu jo mila..to ho gaya main kabil..tu jo mila..to ho gaya sab haasil

Today my sweetu , my son Aaru aka Araadhya Srijan, went out for my sisrer's musical show without me, as I was feeling really tired.

This was his first time without me outside house, for such a long time
I kept calling now and then to know his status and my mom reported that though he looked jolly while going out but the moment he realised that I am not around, he cried bitterly. But they could get him around after car trip and moving around. My mom's presence is reassuring for him and me as well.

But the fact that for a while he missed me like mad, made me fee strangely satisfied.

I am a working mother and he gets to spend only 30% of his waking moments with me, in a week. Rest 70% is with my mother yet he craves for me!!???

This feeling is so enriching, so rewarding, so beautiful that I can forget all my malice, all my anger with the world in just that one moment of him trying to find me in every face and crying cos he can not see me

His feeling is so re-assuring to me in many ways..it tells me that apart from what I appear to the world, I am beautiful..I am spotless..I am perfect
Apart from how I torn and scattered I feel, his feeling for me assures me that all thats broken in me will be mended just cos he thinks I can mend it all for him

My love for him, which results in his immense love and trust in me...decides it all

He tells me that I am invincible

There is something so pure about a child loving you, so attractive, so heart wrenching that the toughest can melt
I see Aaru flashing his smile all around ..to the auto wala, the sweeper, each of them smiling back to him..the ones whom we see usually grumpy with us

And to have that child's love so centered around you..is a privilege, is a gift

Tu jo mila..to ho gaya main kabil..tu jo mila..to ho gaya sab haasil