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

Pause, rewind, replay...please

I wont let everything in me go waste, I am just waiting

I feel there is a pause, I am living a pause..life will get on accelerated mode again

One in a million

In my 3 months scan(which is the major milestone scan) I had a chance of 1 in some 1515 to have a child with downs..as they say it

I had no idea what downs meant..in my vague mind I thought it has to do with low placenta and I dint pay much attention to it

In my next 20 weeks anomaly scan, which I took as routine, the lady doctor who was scanning looked concerned..it took her an hour to evaluate and calculate many things and finally she called me in and told me..there are 4 soft markers which have raised your chance of having a child with down syndrome to 1 in 10 ..she looked vicious to me

I stared at her...cos by then I read up on down syndrome and even my then gynae had told me that I needed to get a few tests done(cos of my age) to rule that out..she had warned me about what a life for a child with DS could be so that I could take a smarter decision (and whats that? to end a life which could have brought me so much joy?)

To have conceived was a miracle to me..in all the conditions that this happened so not for a second could I ever think of thinking twice about having this child

I dint know what to tell her..she sensed that and since she and my gynae belonged to the same hospital, she said you should go and talk to her immediately and even spoke to my gynae and asked her to take my appointment immediately inspite of the end of the day

I rushed to the gynae, not knowing what she would tell me..but knowing surely that whatever happens, this child is coming in this world

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...

My baby has down syndrome

Yes he has and I love him for all that he is and more..
Here is my FB post which I put up last month

October is the month of down syndrome awareness and in this month(after much apprehensions) I choose to make the small world in FB aware of the fact that my baby has down syndrome and it means nothing compared to the possibilities and potentials he has
I will be posting more DS myths in days to come but today I want to just share this small story someone posted in another group:
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Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of special needs children. Did you ever wonder how mothers of special needs children are chosen ? Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
„Armstrong, Beth; son; patron saint, Matthew.“
„Forrester, Marjorie; daughter; patron saint, Cecelia.“
„Rudledge, Carrie; twins; patron saint… give her Gerard. He’s used to profanity.“
Finally, he passes a name to an angel and smiles, „Give her a special needs child.“
The angel is curious. „Why this one, God ? She’s so happy.“
„Exactly,“ smiles God.
„Could I give a special needs child a mother who does not know laughter ? That would be cruel.“
„But has she patience ?“ asks the angel.
„I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence. She’ll have to teach the child to live in her world and that’s not going to be easy.“
„But, Lord, I don’t think she even believes in you.“
God smiles. „No matter. I can fix that. This one is perfect. She has just enough selfishness.“
The angel gasps, „Selfishness ? Is that a virtue ?“
God nods. „If she can’t seperate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‚spoken word.‘ She will never consider a ‚step‘ ordinary. When her child says ‚Momma‘ for the first time, she will be present at a miracle and know it ! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
„I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.“
„And what about her patron saint ?“ asks the angel, his pen poised in midair.
God smiles. “ A mirror will suffice.“
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DS myth : Down syndrome is genetic so there's nothing you can do to treat it. Just take her home and love him.
DS reality : Ds is genetic. There is no cure, but the underlying mechanisms are biochemical and thus can be treated through diet, supplementation and targeted nutritional intervention. Even cognitive delays are now being treated.Unfortunately, most doctors receive less than 24 hours of nutritional instruction in med school. By aggressively treating the symptoms of Ds (vitamin deficiencies, biochemical imbalances, oxidative stress, hypothyroidism, apnea, growth hormone deficiency, malabsorption, etc.) we can improve, correct and prevent many of the problems associated with Ds. If your doctor is telling you otherwise, their expectations for your child are too low.
(Note: I would not take any comment saying "I am sorry" as having him in my life is nothing to be sorry for and I pity those who might feel like that, cos a child for me is not an investment)
"When your heart cracks open, it allows the light to shine in."
My Aaru is my means to glory..to beauty..to wonder..to miracle and to the very thing that makes me

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