Thursday, April 19, 2012

Here and There

There are things in life we do not control.

We do not control where we will be when a tsunami hits somewhere, and washes away everything that comes in contact with it.
We do not control where we will be when an earthquake hits somewhere – shaking, rocking and destroying everything within its reach.
We do not control who will be driving ahead of or behind us on a freeway, and in what state.
We do not control the color of our eyes, the shape of our nose, the color of our skin, the length of our eyelashes, the texture of our hair, our height.
We do not control when and if Alzheimer’s will hit our body.  
We definitely do not control the number of chromosomes in each and every cell of our body.

Fortunately for us, there are things in life that we do control.

We control the kind of people we become.
We control the kind of friends we can be. We control the kind of friends we make.
We control the positivity we can bring along.
We control our temperament.
We control our ability to deal with various situations in life.
We control our intent.
We control our attitude.

Samaira had down syndrome from the second she was conceived. We did not know about it until a day and half after she born. The seconds, minutes, hours, days and weeks that followed were a complete whirlwind journey for Siddharth and me. While our world was moving upside down, sideways and back, and in any which direction it could, the world outside was perfectly normal. I hadn’t looked outside the hospital window until a few days after Samaira’s diagnosis. And that’s when I realized – everything outside was unchanged. The cars were moving on the street just as always, people were walking up and down the streets just as always, an old guy was playing a piano in the hospital lobby just as always, the Christmas decorations were lit up everywhere just as always, it was a cloud covered day in Seattle just as always – nothing had changed. And here we were, with our lives, in which nothing seemed like it could ever go back to “same as always”, ever again.

Sometimes I wonder if I would have been the same (“can’t find the word”) kind of mom if it weren’t for Samaira’s diagnosis. Maybe. Maybe not. I wonder if I would have been just as expressive in my emotions. Maybe. Maybe not. I wonder if I would have started to blog about it all. Maybe. Maybe not. Writing about it all is cathartic for me in some ways. There is something to be said about articulating what is going inside your head, so it doesn’t stay inside there in a disruptive manner. I did not decide to write about it to prove a point. There was nothing to prove. I did not do it to increase people’s awareness about down symdrome. I am not at the point where I can be a positive influencer in the society regarding down syndrome. I am still in the process of fully understanding it and making my peace with the diagnosis. I did it because it helps me offload some of my emotions, at least temporarily.

I can’t say it enough, but the only one that keeps me focused through it all is Samaira. She is pretty mighty that way!

Down syndrome is characterized by certain conditions, features and abilities. Every time I see a (new or old) feature in Samaira that reminds me of down syndrome, it takes me a few steps back. That’s not true with Siddharth. He is further ahead in his journey than I am. That said we both have our joys and concerns. One of the things that I was (and am) most worried about was Samaira’s speech. Somehow that communication piece seemed really important to me. I have seen a lot of videos to prove the speech abilities of an individual with down syndrome. And that helps.

But I have realized that irrespective of that, there is so much - just so much - that Samaira communicates with me even without saying a single syllable. Here face – eyes, eyebrows, the shape of her mouth – says so many things to me. I have seen a lot of love in her eyes. I have seen frustration and anger too. She says a lot with her un-deterred gaze, and with the flutter of her eyelashes, and with her impossible frustration, and with her pursed lips extended in a downward fashion, and with that smile on her face, and with her raised eyebrows, and with her rolling eyes in the middle of her closing her eyelids, and...

She says so much without saying anything. She says,

Mom, I love you.
Mom, why can’t you understand what I want?
Mom, enough talking, I need to sleep.
Mom, play with me.
Mom, come talk to me.
Mom, I am not talking to you.
Mom, I am starving and need some food. Right now!
Mom, you are a nut job and nothing you say makes sense J.
Mom, I am so tired.
Mom, can’t you see I am sobbing.
Mom, I am up to something but that’s for me to know and you to find out.
Mom, I need to be alone and not be held right now.
Mom, I want to be held.
Mom, I need you.

How could I ever question her ability to communicate with me?

I can’t help but say, I am really proud of Samaira. I hope she grows up to be a very, very strong individual and a nice person.  

1 comment:

Anonymous said...

I hope she grows up to be a very, very strong individual and a nice person. >>> Amen to that!