Monday, December 26, 2011

3 months

Time seems to be taking it's own sweet time... It feels like a lifetime but it's only been three months. 
Being here in India right now is very helpful. Nobody here knows what Amaey has been through, nobody has an idea about our last 6 years or about our intense last five months. 

Life and death has a very different meaning here. It's all gods will. Maybe it was his time, maybe that was all the time he was given, maybe his journey with us was only for so long. The thinking is so simple. (it does sound much beter and philosophical when heard in Gujarati or Hindi) God plays such a big part of life here. Nothing is done without god being involved in it. 

Is this blind devotion or way of life? I believed in god too. In my own way I prayed, went to temples, churches, or any dwelling that gave me the peace I needed. Something my sister Dipti said is still stuck in my mind, "When I got Amaey's shocking news I was in the temple as it was Monday and i go to temple before going to the office. I asked the question why? I kept on asking this question and I got the same answer that you always prayed to get him well and let him be out of pains. I think lord only heard the second part."

I still do believe in god but the connection I felt is lost. When I see any god I just have one question, why? And then I start crying. I don't have anything to say or ask I just want to understand the why. I'm searching for that answer everywhere. When I'm driving, walking, talking, or just drifting... There is a spiritual channel on TV here and I find myself flipping channels and landing on that channel in hopes that I will hear the answer to my why.

It's still hard for me to accept gods verdict. 

Saturday, December 24, 2011

The Arabian Sea

On Dec 10 we had all of Amaey's best friends over. It was very touching to see the love in that room. We each lit a candle and then some of the kids played an instrument and then I played Amaey's last concert performance.
All the kids sat in a circle and each of them told us what Amaey meant to them and what reminded them of him.
Some of the children had already written a note for him and the remaining sat and wrote and drew something for him.

Yesterday, December 24 we went to Hajiali, a very well known and auspisious mosque in Mumbai and made boats out of all the notes and set them free in the Arabian sea. This mosque is in the middle of the sea with a path that is only accessible during low tide. The waves of the sea crash onto the rocks and steps surrounding the mosque. Apurva's sister Swati, her husband Ashish, and daughter Meera were with us too. Of course Sir Hoppy Bun Bunz was with us too. Amaey's favorite didi is in Mumbai too, Aditi didi and we were supposed to call her before we left early at 8am but none of us remembered. I think we were all grieving in our head in our own ways and just could not think about anything. We are still here for a few more days and we hope to go and do something special with her for Amaey.

Releasing these boats with messages to Amaey makes us feel close to him and makes us feel like he is reading all the special messages we send him. I love to see birds take off and the waves crash at us when we are thinking of him. I feel like he is there... I can feel him.

Saturday, December 17, 2011

SFO to Mumbai

The flight from San Francisco to Mumbai was hard. I could see Amaey everytime I closed my eyes. Our flight to Tel Aviv came vividly back to me. I kept seeing him sleeping and an internal tension brewing inside me. I did not think that a journey we had embarked on would be cut so short.

I did not know what a panic attack felt like, what anxiety attack meant. I have never felt claustrophobic before. All I wanted was for the plane to land in Mumbai. All I wanted was for this journey to end, the plane to stop and to run away as far as I could. I just wanted to go home. I had such a headache and could not shake it off. I was bad company for Arjun. He kept asking if I was fine and I kept hoping it will get fine but 16hrs later it still wasn't. I use to love going on journeys, longer the better. I loved the freedom I felt from being in the sky, seeing the different formations of the clouds, catching a rare glimpse of a sunset and a sunrise. Being able to get the most beautiful view of the world below, dazzling lights of a fleeting city in the night sky, and sometimes, just vast expanses of nothingness.

But not this time. This time I was hugging sir hoppy bun bunz and thinking about the various flights we had taken as a family.

I will have to find a way to get over this fear of flying because Amaey's bucket list is long and exotic - LegoLand, New York, Greece, Egypt... to name a few.

Tuesday, December 06, 2011


When I wrote about the family of 4... no 3, I received a few emails and insights and they made me realize that loss comes in many ways. Death is not the only way to loose someone or something.

I took permission from my sister to share this on my blog.

If i said that i can feel how you feel then it will not be true because only a parent/parents who have lost their child who is their heart/soul/life would feel it but I could say that I honestly can understand your pain. I don't know if it is right or wrong for what I am going to say but when I say i understand your pain what I mean is when I read your mail where you had written family of 4 and not 3 I could not stop myself from thinking about myself. Yes by the grace of GOD my beloved SON is healthy and happy and I always pray every night to god that may he always be healthy and happy but it has been 16 months since I last spoke to him and 14 months since I have seen him and I also feel my family is of 3 and not 4 and beleive me it is killing. The pain is such that you cannot show it but you feel it and it is there with every breath you take. Yes you do not stop living but that does not mean you stop thinking and loving the person any less. 
One thing I make sure I do is if I want to cry i do cry. On Fridays when I am at home I have a good cry and for a while it feels good. Maybe for me my pain is a bit different because for the past 2 and a half years my son was making me feel like a failure and that was killing me. But one day I was sitting and don't know what it was but I said to mysellf that I was being very harsh and unfair to myself. I know I am not the best parent and never have said so but I have tried to be a good parent and have done my best to raise my children as good human beings and I should not be too harsh to myself. 
The way things are I have convinced myself that as far as I am alive my son is never going to want to know me and I also know for a fact that I am not going to get the chance till I am alive to see his child/ren and believe me it has not been easy to do this but if I am suppose to live for whatever years I have to then I have to stop living on hope and face the facts.

Loss is universal, no one owns it. Everyone feels it in their own ways for different things. What might seem trivial to one might be a huge loss for someone else... the emptiness, the huge gaping hole, can be made by anything. I wish the living would not hurt each other in such a way. I wish the living would slow down and stop hurting the people they love most.

Monday, December 05, 2011

Sharing the smile and the wit

This is Amaey in true sense. Every day and everything he did was with the same love and intensity... didn't matter if he was in the hospital room waiting to be wheeled for a procedure or make custom music for his brothers lego movie.

Here are some links of the boys jamming

Here Arjun was the director and knew exactly what he was looking for and Amaey knew exactly how to create what his brother wanted. Amaey made the original music played in this movie.

Sunday, December 04, 2011

The Warriors

When you become pregnant you start noticing pregnant women... Everywhere. Seems like it is an epidemic.

When you become a cancer family, you start hearing about people diagnosed with cancer. People come up and talk with you about tales of friends, family, distant relatives. Their cancer, their journey, their magic potions that miraculously cured them.
You are enlisted in an 'invited' only list.

When you loose a child, you become a part of yet another group. You suddenly hear about families who have lost the battle. About freak accidents, about tragedies beyond words. About loss that is so deep that suddenly your loss is made to feel weak.

But what is worse than death of a child? Whether it is a known cause, an accident, an illness, birth, genetic, or what have you. What really can be worse than loosing your child. Even in grief we human beings want to one up each other. My story is worse than yours or more tragic than yours... Really can one put a ratio or percentage on tragedy and loss? Can I not own the sole proprietorship on the loss of my child? Can I not make myself feel like I don't need to compare and made to feel better like the doctor once told me that if you were out shopping for cancer, the one Amaey had was the best one we could have selected?

We human beings are cowards as such. We always look for the bright side in everything. At least it's ALL, it could have been worse. When it got worse, we say at least he is back home from the hospital and does not have to be bed ridden like many other kids. At least he can go to school few days a week. You hear of a family breaking up and you go, at least we made it through all of this intact. Suddenly you hear about a parent loosing a child and you go at least they have few other kids in the family. You meet a family who has only one child and they say to you, at least you have another healthy child with you. You loose your only child and in a few months your life partner.... What do you say? At least I'm alive and able to keep living?

The only lesson I remember from Darwin if of survival of the fittest and I have used it on my kids several times... But now when I look around, see some dear friends walking boldly through life with a ghost following them everywhere, I wonder WTF survival of the fittest really means?

A friend lost her daughter 3 years ago, my dear dear friend lost her son 2 years ago, another friend lost her daughter a year ago. All of these friends have shared words of reason and reached out to me and I'm so grateful to them. I call them warriors. Warriors who have seen more in life, beyond their young years. I call them Warriors who are part of the human survival of the fittest experiment. I call them Warriors grieving and healing and picking up and moving on in their way. Am I honored to be invited in this esteemed Warriors club? I wish I didn't have to be but now that I'm a part of this club I will respect their loss and many more losses to come and pray that each loss is given the dignity it deserves. Every child leaves a mark on your life. You don't have an eraser strong enough to erase it or a whiteout that can cover it. The mark is made for a purpose, to teach us to live our fullest and enjoy what we have, when we have it. Because once it is gone, it is gone forever.

Thursday, December 01, 2011


I had planned to run away to my friends house in Massachusetts as soon as my parents left for the east coast on the 30th. But I should have known that things don't work that way... I did not want to be alone after my parents left. They were here in my house before we got back from Israel. They have been here for us during the hardest times of our life these past 2 months.
We did not really do much but just their presence was enough. Having somebody other then the 3 of us had different energy in the house.
My parents are amazing. They are so alive and full of life. My mom loves to cook, did I say LOVES to cook! That is her passion and she keeps her self busy in that. Cooking food immersed in her love helping us heal little at a time.
My dad is just a naturally friendly person. He has so many friends. He is on the phone all the time. Calling friends and relatives all around the world. Catching up with all his kids every day.
My dad and mom would have little fights, and fun and crazy arguments.

So once they would leave I would be by myself in the house with Apurva at work and Arjun at school so I thought about going away for 5 days. But Apurva had to leave for India and now my parents are gone too and I'm still here... in the house.

Yesterday I was out the entire day, did not come home until Arjun was back. I went to Skylawn and spent some time where Amaey had his funeral 2 months ago. I sat on the rocks and looked out where you can see the ocean. There were some beautiful schools of birds in various transformations.
But today, I'm enjoying my alone time. I really needed it. I really needed this quietness. At lunch I found myself sitting in that one spot Amaey would... by the window where the sun would streak in. The only spot in the whole living room where he would be able to soak up all the sun. I happened to find just that spot and did not realize what I was doing until I sat on the floor and then had to close my eyes because the sun was too strong, I suddenly started smiling.

I really need this alone time to just take in everything... I know each day is different and will bring different feelings, but I'm not scared of that. I feel like a big experiment of human survival. I want to see how I get out of this strong and happy. I want to remember Amaey with a smile on my face. I want to think about him and feel warmth and happiness.