Yes I worry

Yes I worry.
I worry that my memories will fade
I worry that each moment won't remain vivid.

Just the other day I woke up and hoped
that you were in the kitchen,
sitting by the window, reading your Calvin and Hobbes
I was waiting for a tantrum
Your fancy cravings
Your precise fancy cravings
But, there was no one, just me and the music
So I did it - I made my poached eggs, omelet style in the 4 little moulds
Whipped up a fancy gourmet breakfast.
I did it in your memory.
I keep looking at your menu, the one you and I created.
The one that was my life savior for school lunches
because a pbj everyday wasn't on your mind
no it wasn't
And to whip up a new recipe every morning
To please your changing craving was becoming hard
pbj + apples
quessedilla + banana
crab cakes + pears
chicken nuggets + grapes
pasta + carrots
So many tears spent over this.
Your little eyes filled with so many tears
But once you put the first bite in your mouth you would smile your biggest smile and those tears would roll off those chubby cheeks and we would hug and I would look at you and say
don't waste those pearls, those precious pearls. They are mine. And I would drink up your tear and you would give me a big hug.
Sorry ma
And I would say, sorry ammu
Then we would enjoy our breakfast and plan a nap for after you came back home from school.

MASALA

On August 29, I had an appointment for MASALA. This is a study conducted at UCSF for Indian families over 40. They are trying to study the cause of heart problems in the Indian population.

Apurva is the one that was contacted for this study but when he called to make an appointment the men's area was full so they booked me instead. I had casually asked them of the study and what it entailed. They mentioned that it would take a full day and I had to be nil by mouth and it was slew of different tests. I wasn't sure I wanted to do this... I wasn't sure I wanted to be part of any study.

For one reason or the other I had to cancel my appointment and they managed to schedule another one. I told myself, hey take your iPad, you haven't written in a long time this will give you a good chunk of time to write while you are sitting and waiting. I took lots of books and some snacks for when it was ok to eat.

I parked in the parking lot and walked to the hospital. As I'm walking through the hallways and getting in the elevator, my blood pressure drops. The elevator opens to the 5th floor and I look for the area I needed to go to. I get there and all I remember is a blankness all over myself. I filled the form that I was given and asked about the format of the tests and then one of the nurses comes and says, lets go to your room. Room! What room? I'm screaming in my mind but no words are coming out. I follow the nurse and she asks me to sit on the chair or bed wherever I'm comfortable. By now I'm numb. She leaves the room and I stare at the bed, the tables, the room, the light coming out of the window. I suddenly get up and walk out, tell the nurse I will be back and walk out, walk to the elevator, across the street to the parking lot and back in my car.

I could not do it. I texted Apurva, I'm freaking out. I cannot do this. I emailed the doctors from the study... I can't do this.

I did not realize that my body had gone in a kind of shock. I cried the entire way back. I came home and slept the entire day. I could not move. Why on earth did I sign up for this? What was I thinking? I guess there are memories and then there are memories... deep down, that you did not know were there.

First day of 8th grade and First day of 5th grade

Arjun started 8th grade today. Last year of middle school. A big year. Amaey would have started 5th grade, his last year in elementary school.

Last night when I went to say goodnight to Arjun we were talking about this. I told Arjun that though his brother is not here he is always with him. I said, maybe he is born somewhere, And Arjun goes.... But he might be in 5th grade. I was really perplexed.... How? He explains, you know how the soul leaves the body and then it goes into another body, you know how sometimes somebody if dying and their heart stops working but then they suddenly start breathing after a delay and they call it a miracle.... Maybe Amaey's soul went to some child going through that and now he is living his life as a 10 year old, as a 5th grader.

I was amazed at this story, I so want to believe it. It is beautiful. Yes, that can be possible right? Maybe in 2030 when the first person goes to Mars, Amaey will be one of them because of his second chance. Because his brother wants to believe that miracles can happen. Because his brother did not want him to suffer from cancer anymore and would rather give him up if it meant that he got a new life.

Oh Arjun, may these beautiful thoughts get you through 8th grade and beyond!

August 25

I kept hoping that if i do not acknowledge that the date has arrived, that it is 11 months today, it will just pass.... 

I was taking a reiki class today and I asked the teacher, if the soul moves on and takes home in another form, then how is it that we can feel him with us, see him in different places and in different ways? He said, that the consciousness is always there. That never leaves us. That consciousness touches us in many different ways.

When I talked with the grandmaster she said, why are you despairing, don't cry because he came here to cleanse his soul and your family got to help him move to his next life form. Your duty was to serve him, take care of him and then it was time for him to leave.

Yes we understand all of that but it is so hard to fill the huge hole that we constantly feel. Davina was over and she said that she felt Amaey's presence really strong in the house and I couldn't help but agree. This is Amaey's house, he used every inch of it with lots of love. He has poured so many memories in each wall, each corner, each sofa, each bed, each closet. You cannot be in the house without feeling his warmth.

We pray for his next journey to be beautiful and we hope that it is just what he wants to make out of it.

How I feel

Anticipation of Aug 4 drained me. How will I react? How will I feel? I really did not know. 4th has come and gone and my heart is still heavy, very heavy. I feel tired and have no energy to do anything. I try though but then I need to take a long nap because my brain cannot think, my heart cannot beat any faster, and my entire being feels like it is sleep walking.

The Compassionate Friends send notes and poems on my fb and this was one I had seen a while ago. A dear friend sailing the same shores sent it to me and yes... this sums up my life... right now.

Please Be Gentle

Please be gentle with me for I am grieving...
... the sea I swim in is a lonely one
and the shore seems miles away...

Waves of despair numb my soul
as I struggle through each day... 
My heart is heavy with sorrow...

I want to shout and scream and repeatedly ask "WHY"... 
At times my grief overwhelms me and I weep bitterly..

So great is my loss...

Please don't turn away from me
or tell me to move on with my life...
I must embrace my pain before I can heal...

Companion me through my tears...
sit with me in loving silence...
honor me where I am on this journey...

Don't forget me or my child...
Listen patiently to my story...
I may need to tell it over and over again...
It's how I begin to grasp the enormity of my loss...

Nurture me through the weeks and months ahead...
Forgive me when I am distant or inconsolable...
A Small flame still burns inside my heart...

Memories trigger both laughter and tears...
There is no right or wrong way to grieve...

We each must find our own paths... 
but... please will you walk beside me?

The first of everything

When you have a baby the first year is the year of firsts. The first smile, the first pucker face, the stinkiest poop, the first words, was it ma, was it ga, what was that first word. The first steps, that first fall. the first fever and the first tear.

The first year is a celebration for the parents as much as it is for the child. The parents survived the fist year... They made it. They have a talking, walking bundle of joy on that first b'day. Bursting with pride, doubting every move they made yet fearlessly doing it every single day and seeing their rewards in that growing child, in that beautiful reward... The hug, the love.

The first of everything when you loose a child for those fearless parents is quite a fearful experience. The first time you walk through your front door and you don't have your greeter. When you get in your car and you do not have your passenger. Walk into a grocery store and the stories behind the blueberries, coconut milk, a particular bread, come gushing in your eyes. The first time you hear a song you sang together. The first time you enter their room and all you have is nothingness.

But none of this prepares you to their first b'day without them. 

August 4th 2002. He had to repeat his b'day so many times in his 9years. Every time he sat down for his poke, his blood test, his procedures, his clinic visits and stays. The first question they would ask is.... When is your b'day Amaey? And in his cute little voice he would say august 4 tutousantu. I could not tire myself from hearing that each time. I felt that through all those years of him repeating this date i saw him getting older and having yet another b'day.  As he got older he would say two thousand two and I started missing that baby voice but it was wonderful to see him fill up that chair where he got his blood test for 6years. What I wouldn't give to hear that one more time. 

I know we are a wreck right now. And it's hard to do anything. I feel drained out of every bit of energy I have. I don't know how we will feel tomorrow or day after, on the 4th. But we will go through yet another first that will expose our loss and rub it in our face...

July 25

This date arrives and stops me in my tracks.

I like that too. I call it my day with Amaey. I like to sit and just think about him today. I like to be within myself and just be. Sometimes I'm upset, sometimes, happy, sometimes I just want to go over everything that happened on that day.

How do I feel today?

I had lunch with a dear friend after a long time. I went and worked out in the gym with my niece. I took a power nap. In the evening I wanted to light a candle next to his photo and cry. His beautiful photo just looks straight at you with his big priceless smile. He is really trying to tell you, it's ok, he is really happy.

I love you Amaey. It's 10mths today.... How can time just go by? We, the living have to keep living, time keeps passing, we have to wake up the next day and the day after...

What now?

How do I adjust to a 1 child family?

How do I keep myself busy?

I'm struggling right now. We run away the minute there is a break in Arjun's school. I buried myself in the Kids&Art auction. Really wanted to do it and now that is done too. The day after the auction I collapsed. I felt the vacuum and did not know how to fill it. The days leading upto the auction were so busy, so much to do, so much to get done, so much to pull together. So many people helping and just so much activity. The mind was busy. Happy too. When we went to Pixar to do art, it was sad to see all these bereaved families but there was so much positive energy in the art room. It felt like all the loved ones were there, holding our hands, painting with us.

But the real question under all of this is - how do I find the real normal?

I haven't even unpacked Amaey's bag since we came back from Israel. How do I get myself to clean up his closet. Thanks to Vicky she did it for me. I asked Arjun if I can empty the closet and take all of Amaey's clothes away and he emphatically said no. I have so many books that Amaey read, I'm debating whether i should donate them to the library or keep them, Arjun wants to leave them. He refuses to let anyone take anything that belonged to Amaey. For him Amaey lives in all those things that he touched.

My goal for going away for a month was to be able to look at life from afar and see if I can find a way to fix it. But I don't know what really needs fixing.

All I know is that Arjun has fond and loving memories of his little brother. For him, Amaey is happy. For him, Amaey deserved better. For him, Amaey was the smartes person he has ever met. He wants to live with those memories. He wants us to learn to do that too. He wants us to keep Amaey in our heart and learn to live with him. I so admire Arjun for that.

They say life closes one door and opens another. I do hope to find one soon because right now I feel astray.

December 27 2011

I wrote this in December when we were in India while Apurva's dad was in the hospital--

Today I went to the hospital to relieve my mother in law. Dad is in the ICU. They had to take him in on Sunday morning. That afternoon Apurva asked me if Arjun and i could go to visit him... I couldn't. I just couldn't get myself anywhere near a hospital. 
Last night I was worried for dad and this morning was hard to stay in bed, I kept checking the time, I wanted it to be past 7:50 before Apurva called from the hospital. Suddenly at 6am we get a call and I jump out of bed but it was Swati, she wanted to let us know that she had reached. 
Today is 3 months since Amaey left us and I just do not know what the holds in store for us.

I had a gag reflex as I walked in the lobby of the hospital. I did not realize I had such strong emotions attached to it. The driver took me to the ICU on the first floor and as I opened the double doors I had to try hard to not start crying. So many people fighting for their life. In dads room, the constant beeping of the monitor, me trying to silence it, nurses and staff constantly checking in, dads frail body... 

I do realize that taking care of a child and an adult is different in some ways and similar in many. The biggest difference is that with a child you are responsible for everything, every decision. You need to curb their anxiety, explain before a procedure is going to be performed and prepare ahead of time for any new tests. An adult can handle it and take it in their stride. However the pain is the same. But it sure is hard to watch a child going through pain of an adults proportion.

Amazing Amaey

I wrote this in January. I'm thinking of doing an illustrated Book about Amaey. I spent some time talking with a book illustrator and she needed s little story about Amaey. So this is what I came up with--

Never thought he was sick
Did not consider himself less fortunate
Always had a smile on his face
Always lived in the moment
Loved life
Was very witty
Had a lot to offer to everyone, whether it was in the class setting, with his family, his friends or at the hospital
Loved his brother and always thought he and his brother would buy a 2 storey house and live together, yes even after they were married and had kids.
Believed in science
Wanted to play his piano like Omar Sossa
Wanted to do a throw down with Bobby Flay
He was an avid reader and picked his reading material very carefully
Wasn't easily swayed by people or fads or trends, instead he made his own rules

9 months

We are in London right now after spending 12 days in Italy.

Amaey would have loved the food in Italy. We ate amazing food everyday. Pasta and pizza was among Amaey's favorite foods. We don't think he would have liked Rome much. Yes the colosseum would have been a wow for him. Venice would have been enchanting for him. We think he would have liked the way the city does not need plumbers because the tide clears up the canals. He would have been fascinated with the several canals and the fact that there are no cars in the city. Florence, he would have really liked. We went to the Galileo Museum because we know he would have wanted to see it. We were so glad we did because it was an amazing collection of inventions. The way the room was designed, the way the exhibits were arranged, the clear explanations, the movies explaining all the I vent ions... It was quite spectacular.  Arjun and Apurva took so long in the museum that I left, sat at a bar, had my tea and foccacia and went back to the museum and they were still not done.

Here in London, Amaey would have loved to see his cousins and masi's and masa's. If you were to see Akhil, my sisters son, Amaey would have grown up to look like him. It is wonderful to see him. Akhil came to US in August 2011 and was there for Amaey's 9th b'day. He and Arjun would come and play games with Amaey in the hospital. 

Today, Arjun went to the Harry Potter World with his cousin Anokhi. Would Amaey have wanted to be there? He really liked all the Harry Potter books but did not really enjoy the last 2 movies. He thought that they overdid it by dividing the last movie into two parts. He and I re watched HP 2 many times in the hospital. We also decided to re watch the entire series but when it came to the last 2, Amaey did not enjoy them. He found them too loud and dark  and it wasn't something he wanted to do. 

Today, I went for coffee with my sister Bhavna, we were taking about a lot of different things. I wanted to know what time it was when they got the call about Amaey and she said it was 7:30am in London on Sept 26. As soon as Amaey had passed, I had called my sister Mona and told her ammu was no more and he was still here if they wanted to say anything to him for his journey. I kept my phone next to his ear while all four of them talked with him. 

Here in London, we keep talking about ammu. We talk about him whenever we think he would like something or find something weird. his family has been cooking amazing meals and tomorrow we are planning to go for dim sum in Leicester Square, and this meal is totally for ammu. Last time we were here in 2008, we went for dim sum and to the transport museum, and Amaey and Arjun had had the best time of their life. I know tomorrow he will be with us too.

Italy

Italy, we are in fattoria il lago, out in the middle of Tuscany. It takes an hour to get here from Florence, it's a small town, village I should say. Once you get to the farm, you forget everything. You forget that it took you 2.5 hrs to get here instead of 1. You forget that you finally made it in at 2am. You just forget everything. The cool nights breeze, the chirping of the birds, the wide expanse of lush green mountains and vineyards all around you take you away... The view outside our room is pure, all I see as far as my eyes can see is greenery. The Small chapel on the property is lit with lights. The 4 other villas are close but not too close. 

We went swimming in the pool and for a hike on the farm. Apurva wanted to carry on but I was too hot so I walked back. As I'm making my way, I feel ammu walking by me. I kissed my hand because I could feel his hand on mine. It was so beautiful that I did not want the moment to pass. We walked downhill for a while and I was peaceful. As I took a turn on the road, I knew he was not there anymore. I knew I was walking by myself. The weight on my hands was gone. No one was holding me hand. I had a warm smile in the 95 degree heat. 

I cannot express how beautiful that moment was. I have heard such stories and considered them fibs. But, I have had so many such special moments now that I know that these visits are real and special. 

I went for a walk after dinner, I think it was 10pm. The farm is lit up in a few lights and then all you can see is some distant light on the mountains and lights from the village square all the way down in the valley. The breeze is cold and the air smells fresh of jasmine and earth and sometimes just of the dry grass that is being packed into bales. As I left the columns that mark the entrance to the villas I could see some lights flickering. I kept walking towards the dark path wooded with trees. It was a bit spooky because it was pitch dark. I was really curios about the little flashing lights and as I kept walking I realized that I had fireflies all around me. I have read about fireflies and seen them in illustrations but never seen them in real life. I did not know that something could amaze me in this way. I felt like a little girl in an enchanted forest. I felt like I had a special showing of beauty.... All for me, unspoilt and breathtaking.

I turned back and took the path that went down toward the village, there was some light from the fattoria glowing my path intermittently. But whenever there was a dark patch I would see my firefly friends gliding effortlessly. 

8 months today

I met a friend at Trader Joes today and she was asking me how I was... my instant reaction is to say I'm ok, each day is different, but today, in my head I was counting the months and hours. I don't mean to. That is not what I want to remember. That is not how I want to remember Amaey either but somehow all the days around the 25th seem to be building up to a climax that I don't want to re-live.

I was sitting with Arjun and Apurva and told Arjun that this might be the last auction for Kids & Art and Arjun looks at me and says why? I said, do you want to be associated with cancer for all your life? Don't you want to move on now that Amaey is not with us? Do you think we should continue with Kids & Art? And without blinking he said, if Amaey was here he would have said, Ma I'm not the only child with Leukemia...

Yes, that is true, that is what Amaey would have said. Arjun knows him so well. That is the Amaey I want to remember. The compassionate, giving, and loving Amaey.

Amaeyzing Music

Yesterday was Arjun and Amaey's music schools performance day. This is the end of the school year performance and kids that are invited to participate get their level graduation medals.

Arjun got his level 1 in guitar. He played a beautiful tune on the guitar with Ms. Simone accompanying him on piano. It was beautiful.

We also made a short video as a dedication to Amaey. If he were here he would have performed and received his level 4 medal. Here is the link to the video and yes he did get his medal.

http://youtu.be/cD6uZzAN9d8

Busy

I have been keeping myself really busy. With 2 classes on campus, our Kids&Art auction, and some freelance work I think I'm stretched. It's good. I'm not complaining at all.

But you know what, filling every waking moment with work or tasks or todo lists doesn't really do much when it comes to what is hurting deep down.

All I have to do is blink and with every blink I see Amaey's beautiful smile. Every time I close my eyes, I see his face lit up, his eyes twinkling from his red glasses.

I was at Arjun's spring tea concert. It was beautiful to hear all the kids perform until the 4th graders get on stage to sing "Here comes the Sun" by Beatles. Tears don't have a lock and key, they don't have an agenda. They are free to come and go as they please. That is exactly how life is for me. I can be staring at his picture for hours, I could be talking about him, I could be spending time with his best friends and have a big smile on my face and all I need is for the breeze to touch me and I'll suddenly be in tears. I'll see a hawk flying on 280 and I'll be in tears...

I guess being busy just helps me get up and out of the house. But if I were to say that it is easign my pain... I'd be lying.

Kids & Art - Art Acution

We were planning our art auction for summer 2011 but 2011 was a whirlwind. Our Kids & Art families have created some amazing art and we are please that are planning an event to celebrate all the art.

Celebration of Life - Auction of art created by kids and families touched by cancer.
June 3, 4-7pm
Gallery 4N5, San Francisco

Purchase Ticket:
http://www.eventbee.com/v/kidsandartorg

7 months

We started a science award in Amaey's school.
5 finalists were choosen from the graduating 5th grade science fair. The decision was based on Coolness factor(what would Amaey find cool), creativity, and actual scientific method. we asked the 5 children to write an essay on how and why they are passionate about science.

On April 19 we awarded the first, Amaey Shah Passion for Science award. It was a bitter sweet event for the 3 of us. Amaey told me he wanted to grow up and work for NASA. He wanted to go to the red planet. He wanted to invent jet shoes. When he got glasses I told him, Amaey an astronaut cannot wear glasses, I'm sorry baby you might not be able to become an astronaut but hey, by the time you grow up maybe rules would have changed. His science teacher, Madame Atom said that maybe he could do the more important job of staying down and making sure the people up there knew what they were doing. 

These possibilities made him quite happy with the future prospects. He wanted to grow up and be famous. He knew that science was his thing.

When science let him down, he was sad.

 On the radio I keep hearing about private missions to the moon. Plans to get to mars. Making manned missions more possible in this lifetime. In Hindu philosophy we believe in reincarnation. We believe that something that you did not get to complete in your life, you will be born again to take care of it. Maybe in his current life, this is all the time he was given. Maybe he had to go through what he did as part of his last life. Now he is free. Free to start fresh. Free to do whatever he wants in a new body. I would like to believe that someday he will be able to fulfill his dreams with a healthy and happy body.

I love you Amaey, wherever you are.

Piano lessons

I decided to take piano lessons at Amaey and Arjun's music school. I started in January and I'm really loving it. I feel like I'm playing for Amaey. When I'm struggling I look at his photo and I can see him asking me to not be hard on myself and keep trying. When I do really well, I feel he is proud of me.

I can feel him hovering around the piano jumping from his left to right feet. He could never stand still when he was excited. He loved hopping on his feet.
He would have been a great teacher. I know he would. When he was learning, I did not know how to read music so when he needed help I was of no use.
There is a song he was learning towards the end... The Spanish bolero, I think. He played it in the hospital. He would serenade the nurses with that tune. I loved that tune. That is what I'm aspiring to get to. My instructor told me... It's atleast 2-3 books away, quite advanced. He made it seem so easy. Well I'm up for the challenge...

Arjun's school

Arjun's school is celebrating culture week and today was India/pak/Persian day. They had lots of events from Bollywood dancing to dandia for all the teachers to dressing all the faculty. In the afternoon they had henna and rangoli and more fun and at pick-up they had a fashion show. I haven't felt like participating in things but I do. I was looking at what to wear and picked something understated... And Amaey came to my mind. He told me once that he thought that I was always well dressed and knew how to dress for an occasion. He was right to some extent, even if we were going to the hospital I would make sure I did my best to make a fun event of it. I never made our hospital visits and long stays into a boring, unfortunate outing. It was something we had to do and we were going to do it in style.

On that note I went to my closet and decided I was going to dress for the catwalk. I took outfits for Arjun and his friends and it turned out to be a really nice event. I wasn't sad that Amaey wasn't there but I felt like he was walking with me when I walked down the red carpet with Arjun.

Kids & Art

Looking at my time since Amaey was diagnosed in 2005 and I quit my job then, I understand that I'm a person that needs to be creative. If it is not through a job then it has to come through redesigning our kitchen and yards. Or by hosting Arjun's Lego club at our house. Or by going back to teaching, but online if that's all I can handle. Or by accepting some small freelance projects that did not have a crazy deadline. Or by founding a non profit that teams up families touched by cancer with local bay area artists.

I founded Kids & Art after Amaey started home schooling and found lots of joy in coloring and painting. He wasn't a kid that liked to paint on demand or paint by numbers or on a selected theme. He was a free bird (I'm sure my sisters will say, like me) but when he started painting, it would be this beautiful texture of colors. There was so much personality in them. We were lucky to purchase his self portrait print and his waffle painting. Seeing those paintings on my walls tells me that he was so true to himself.
He was going through dexamethasone(steroid that made him very moody, hungry, emotional, and all of them raised to 100) when he created the waffle painting. The artist he worked with was Sanjay Patel, they were scribbling away and then Sanjay asked him, hey Amaey what did you eat for breakfast today.... Oh boy... Did Amaey take off after that. He explained in delicate detail all his toppings and textures and flavors. So they decided to paint that.

I have his painting when he spelt syrup as serup and orange as orgen. I'm so glad we have that painting and I know that Apurva and Arjun feel the same way too. It sits above our breakfast nook in our kitchen. He is there with us in an ever so integral way.

When I think of that intimate moment then my question to my dilemma... What do I do with Kids & Art is answered. Then I believe that Kids & Art should continue, give kids their voice, their passion a place in someone's home or office.

But how do I continue, I don't have my muse, my Amaey?

I'm scared that I don't represent hope to parents. What am I going to say if they ask me about my connection with cancer?

When I don't think about that, all I can see is sending canvases and colors out to the kids in the stem cell unit and to kids who have to stay in the hospital for an extended time. And to the siblings and parents who are bound within the monochromatic world of the hospital, I would love to send them these colors so that they can see a glimmer of beauty that they created.

We are planning our Kids & Art auction this year on June 2 or 3 and we have some amazing artists donating their art and we will display all the art kids have created in 2010 and 2011.

But what next? Should I continue Kids & Art? Is it really benefitting families the way I think it is? Frankly, I don't know what to do...