O' Angel Of Mine

This is a very old post, which I was not willing to share before today. I am posting it today, because Feb 28th is celebrated as Rare Disease Awareness Day. I am sharing this today because I feel immense pride in the achievements of my kids and because I want to celebrate them. My kids are suspected with a metabolic disoder called mitochondrial disorder, wherein their body doesnot produce enough energy to sustain life functions. Even though people may not know much about mitochondrial disorder, its pretty common and as the genetic research is advancing, more and more kids and adults are getting diagnosed.

My younger daughter is also diagnosed with cortical visual impairment and bilateral hearing loss. In CVI, even though eyes function well and can see, brain cannot process these images. She is getting better with rehab, but is still considered to be legally blind.

I wrote this poem for K, when she had temporarily lost her eyesight post intubation in 2012 after Acute Respiratory Distress caused by H1N1. For a whole month, she was fully blind and completely deaf. When I wrote this poem, I didnot know what caused her sudden blindness (because there was no damage to the cortex region in the brain),or whether it is temporary or permanent?

I was confused because I had not experienced blindness before. K had hearing loss and visual impairment, both at the same time. Imagine a world without two of the most vital senses and she was right there. I was scared. I was hurting because I knew my daughter was scared and lost. She was just two years old at that time, she could not even talk, and I knew she would have many questions, but she just did not know how to ask. I was scared whether I would be able to help her, guide her, teach her and make her a self sufficient, responsible, independent individual or not. I was scared, because I did not know how to protect her. I wanted to see the life from her perspective, to understand her frustrations, and I was scared that I would fail.

This poem is very special to me because it helped me to release my bundled up emotions and motivated me to look beyond the heartache and pain I was feeling in my heart for K.

O' Angel of Mine -

She came to me with questions in her eyes

as if she wanted to say, O, mother of my,

Why cant I see the bright sun light?

The flowers bloom, the butterflies fly?

Why is there so much darkness around?
Where are the stars, the moon can't be found?
Did the little bird in the garden finish her nest?
Are the trees still green? Is the sun still round??

O mother of my, why do I feel so lost?

I am so confused, for suddenly the world is dark!

I am surrounded by many questions, where am I?
Where did everything go?? Tell me, O mother of my !!

I hugged my little girl, and wiped her tears,
I told her, don't you cry,
Honey, you are in a better world,
The butterfly is You, for your imaginations can fly..

There is nothing fun about the sunlight,
 And who said that the trees have to be green
 And dont you say you are lost,
 That is so untrue and so mean..

You have been found by the god
For he said that you need to see the world from his eyes,
So that you dont get caught in the web of lies,
He gave your soul eyes, and made your eyes blind..

Now you can see what we all can't see..
For you will see the beauty of soul and not the body,
For you will see the kindness of people and not their money,
And you will taste the sweetness it adds, but not see the honey..

You will feel the beauty of the nature,
The colors of the flowers will be filled by your dreams,
You will be the little pixie dancing in the Neverland
You will guide the current and captain the boats in your stream !!

Don't you waste those precious tears of yours !
They are far more precious than all the jewels,
They open the door to your heart and soul,
Only let those who are worth it, to come that close.

Shed your tears when you feel betrayed,
Cruelty, blasphemy, prejudices and hatred...
These are the emotions that you  do not need in your heart
So when you feel these, just shed a tear and melt it off !!

I want you to make a difference in your life.
I want you to make a difference with your life.
Not a big change in the world, just small things,
Touch a life and make someone smile, one day at a time.

For you are God's special child.
For you are an angel of mine.
For God has given winds, under your wings.
So dont be scared, just fly and fly !!

She smiled, gave me a kiss, felt something, looked up 'n said
why are your cheeks so wet?
I tried to hide it, was embarrased but then I confessed,
Little one I dont care about the trees, moon, stars or the sun's shape,
but I do hope that you will remember your mother's face.

- by Nilam Agrawal  ©

The Lost Fight !!

If you have kids then you know motherhod is no joke, and if you are a stay at home mom like me, then God save you. Its like having a 24/7 restaurant and entertainment center running together at the same time, the only difference is that there are no other employees working in shift with you. Its You, just you !! Hallelujah !!

My house is a Mad house ruled by a two minions army, that I made myself. There are days when I feel like,

I was having a fun conversation with my younger sister one day.  I told her some of the days, I totally lose it. I dont mind all the work and everything, its the constant sibling fights that get me. I mean come on, they both possibly can not need NO REASONS to be at each other's throat? How do they even do that? Fight for a reason and I will understand. Dont fight because you are bored and you are like, "Do you want to play FIGHT ?"

It feels like they have a hidden agenda and they conspire to make it true by fighting.

I just want to scream and say,

She jokingly told me that instead of yelling at my little minions when they drive me nuts, I should try and whisper the same words in their ears in a calm, bone chilling tone. We were laughing and imagining how it will be less taxing on my body, and hopefully, more effective and eerie for them.

I had forgotten all about our wishful talk, and remembered it y'day when I was reading one of my friends post on facebook.

Since, I am a behavioral scientist at heart, I was ready to test our little theory.

I did not have to wait long to try it, do you really have to when you have two kids army at your home?

In the evening, I had to intervene to save my son from the clutches of his sister. I pulled my daughter with both hands, my eyes cold as ice, a dead man's look on my face, hard as steel, leaned close to my daughter's ears and whispered, "Leeeeeeet       hiiiimmmm goooo." I even heaved a long breath as I finished my sentence, allowing enough lapse of time between each words and letting GOOOO fade into eternity. I have watched too many horror movies to know that I had it all bang on. I was hoping to get some positive results from my dramatic reinforcement.

My 4 yrs old daughter who was pulling her older brother's hair, looked confused and said 'mommy, goo goo monster.' And then started imitating me. She had learnt dance steps to the song 'Ghost Busters' at her school for the annual day show and I am pretty sure that as she mocked me, the movement of her body was the same as those dance steps. 

 My 8 yrs old boy who was crying because he was getting beaten by his younger sister (yes, figure it out) started laughing and said, 'why are you talking so weird?'

Yeah, instead of scaring them, I actually amused them. Now both of them were united in mocking me. You know I had an Eureka moment at that time !!

I may not know if I should be proud or scared, but it's okay, i know that atleast the fight broke off.