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...

Library

Arjun needed to go to the library to get some books for his school project. When I took him there I had to drive past Amaey's school and I was amazed at how much construction was going on there. I sudden;y felt sad that Amaey won't get to see the new and improved school. As we were parking at the library a gush of emotions came over me. This was Amaey's home favorite place. There was a time when we would check out 10-12 books  and while I'm checking them out Amaey would finish reading a Geranimo Stillton or a Garfield.

He loved the library. It was like an all you can eat place where you can go for seconds and thirds and pile up your plate high with dessert... Calvin and Hobbes in Amaey's case.

02 21 2012

I took over to drive the highlander. A car we had talked about. The car I wanted to buy and you and Arjun had liked it too. Just as I was looking in the rearview mirror I felt like I saw you through the mirror like I always did when I drove you around like little miss daisy. I could see you seat belted with your head resting in the seat and your red glasses on and you were looking outside the window and I could hear your mind thinking something.
Then our eyes met and you gave me your infectious warm smile and I sent you  my mammoo kiss and you gave me this big warm smile that you would and turned your head inwards and then you were gone.

But you were there.

As I write this, I'm on the plane. I'm flying back to SFO and it is feb 25. It's 5months today and once again I will get to the airport but you will not be accompanying us. You are off on your journey. I guess life is a journey and I'm reading a book called Aleph where Paulo Coelho says that we are all one soul and we all meet from time to time. I wish to have many more journeys and I hope to keep meeting you!

Cross country skiing

We went to Michigan and went on a skiing trip. Arjun and Meera decided to ski and Swati, Apurva, and I decided to cross country instead. 

We watched people riding up the ski lifts and then coming down on the slopes with grace and speed. I did not desire that. I did not desire to ride up and come down with a rush of adrenaline. I did not desire to soar a new height. I did not desire speed and the wind gushing towards me. 
What I desired was a calm walk through the snow covered roads. A peaceful introspection. I wanted to cross country ski and take in the sights. Walk the terrain, feel the bumps, climb the unexpected hills and let go on the way down. Fall and then get right up. Each time I got stuck in the snow and drifted back with my skis I would tell myself, you can do it, stay focused and don't panic and I would move on. When we finished the basic green trail and decided to do the level 2 blue trail there were lot more slopes and the terrain was not as well marked which meant we had to figure it out ourselves. Little slopes would suddenly show up and before you knew you were bending your knees and heading down with speed you did not desire and all I kept telling myself is, you are not afraid, you are not going to fall. 
It was truly wonderful to stand there in the middle of nowhere with snow all around you and flurries falling gently on you. It was magical. Just 3 of us in this vast expanse of space.

On the second day the terrain got more icy and the same trail became a little more arduous. I fell so many times because the snow made the skis slip and pushed me back on the slope and invariably fall.

This experience felt like life where there is so much beauty and so many slopes hidden at each corner, waiting for you to fail, waiting for you to pick up and move on again. Waiting for you to give up and then seducing you with more Beauty and flat easy surfaces just to find a big slope at the end of it...

02 21 2012

We got in the car to drive to Boynn Highlands for our ski trip. The car is packed with food and Harry Potter movies. As soon as we started driving, I saw you. I suddenly felt that you were putting your seatbelt on and with your big smile and sparkly eyes you were just looking around ready to have a great time on this journey.

There is now on the road and trees beautifully covered in snow. I felt like I was talking with you, explaining everything you had a question for. My heart filled up and my I started crying. Meeradidi and Arjun are sitting in the back with me and they suddenly turned their faces, they didn't want me to feel bad they they saw me crying. 
I saw you. I felt you and that is all that matters to me.

3rd St SF

I went back to work, 2 days a week, last week. I needed to get out of the house, physically move myself and communicate with someone other then my thoughts and myself.

First day after I was done teaching and I was walking back to my car, I passed Osha Thai, my steps suddenly slowed down at the St. Francis appartments, the stairs, their waterfall. I could see Amaey sitting there with a big smile on his face. We took a beautiful picture there. I slowly walk past Osha, and as I watch people in the restaurant I could see his amazement and wonderment. I had told him to dress well we were going on a date to the city. He looked so cute in his grey corduroys. When we were ordering I let him order a Shirley Temple for lunch, in a very Amaey way he looks around at the beautiful chandeliers and the modern design of the restaurant and goes, ma this must be expensive! Shirley temple for lunch!! Thanks ma!

I told him he was a special date today. We ordered lots of different food and then walked up the stairs of the building and took some wonderful photos. Then we went across to the Yerba Buena Gardens, just walked around and we went looking for ice-cream and walked a few blocks took our ice cream and walked happily to our car.

Today when I walked past after work, my eyes filled up. I was so happy that I had such special moments with him. I just stood there and looked around... Remembered Arjun, Amaey, and my date to Samovar in the Yerba Buena Gardens. Here I'm walking in with two kids, not taken seriously. They had wonderful waiters and an eclectic menu. Amaey and Arjun totally fell in love with it. The ambiance, the decor, the menu, the food on the table next to us everything made them feel special. Once the boys started ordering and asking questions about their menu and their place the server was all over us. She couldn't get over the fact that the boys were ordering and calling the shots. Such foodies. The 3 of us ordered so much and ate it all up. Amaey would dig into his hi-tea sandwich and nod his head and smile, ummm good! We went down to the waterfall with MLK words printed all around it. We read it all and talked about what it meant. The boys ran around in the garden.

Our visit to the contemporary Jewish museum was yet another wonderful memory. An amazing museum with a wonderful collection of exhibits on display. The boys loved learning about the Torah and absolutely loved the music room.

The curious George exhibit was another really special outing for us. Both the boys grew up loving Curious George books and seeing the exhibit made it come alive for them like they knew the character even better now that they knew the artists and writers behind these stories.

All I had to do was a 360 degree look around and from where I was standing I could feel my boys everywhere. I'm so thankful for having spent so much time with Amaey, so much wonderful time with him, so much special time with him.

women

Got this in my email today.

http://www.flickspire.com/m/IAAWAR/Wisdom

Hello My friends mom

When Amaey would call Gabriel's house and if he was in one of his goofy moods and if Davina picked up the phone he would say, Hello My friends mom can I talk with my friend. And Davina would play along and then they would continue a really long conversation without exchanging any names.

I just read Davina's comment on my previous post and of course I started crying. This morning I went for a walk with Maureen and we talk about everything. We ended up talking about the soul and connections we human beings make with each other and we wondered how and why we make them.

She said that Christopher misses his friend dearly. He makes things that he would have loved to share with Amaey. She says that sometimes she can see that if he had shared something with Amaey the two of them would have talked for a long time about it and it would have had a different meaning for Christopher.

Listening to Gabriel's thoughts on how he is writing to Amaey and Amaey will read and correct his work just feels like Amaey was so blessed to have had friends who knew him so very well. Each had a unique realtionship with Amaey.

The only reason I bring both the boys up is because this morning I went to wake up Arjun in his room and all the photos of Amaey and Arjun just talked to me. I stood in front of them and wondered how Arjun is really doing. Everyone says that they understand how hard it must be for me as a mom but today in Arjun's room I felt that my pain is nothing... how is Arjun dealing with this. His confidante, his partner in crime, his 24/7 buddy is no more. How lost he must feel.

When I think about these 3 boys I wonder how their relationship with Amaey will shape their lives. I know Amaey will be a part of their life forever in some way or the other but I wonder how it will manifest as they grow up?

Gym

Today as I walked out of the gym I heard some wailing sound, I couldn't understand what it was and as I got closer to it I realized that a woman was crying unconsolably and the man with her was trying to help her through it.

As I was walking past her I slowly started praying to let her grieve and free herself of whatever was causing the pain.

The gym is one crazy place... if you are going through an emotional rollercoaster then you don't need a shrink, just go take a yoga class and you will end up crying once you are done. I might get through the entire class and just as we have to do our last pose of resting peacefully with your eyes close it will all come up and before I know I'm crying. I just stay there and cry and thentake a deep breath say my namaste and then roll up my mat and leave. Suddenly I have a big smile on my face. I don't understand these feelings and I really don't need to analyze them so I just let them be.

Last week when I went completely out of control with my feelings I realized that it is really important to let go of ones feelings once in a while. Let the floodgates open and cry as much as you want and can... you can't cry forever. Once you are done, you do feel lighter. 

Talking Doctor

I just talked with Amaey's talking doctor and asked he what her last conversation with Amaey was about--

She looked through her notes and said, her last conversation was on September 12, 2011. Amaey was very happy to be going home today. All he wanted to do was walk around in his house, jump on his bed, and he hoped that his brother did not have too much homework so that he can play with him.
She asked him about his experience in the hospital and he said that he was happy in his room before the transplant. The worst  was his headache on the day of his transplant, peg injections, and his biopsy. The two of them talked about coping mechanisms and Amaey decided he would watch cartoons on his ipad next time he had a procedure.

She said that she sees a lot of patients and Amaey was someone she looked forward to seeing because she knew he would make her laugh and show her a new toy and play music on his keyboard. She said a lot of kids that are undergoing treatment become entitled but she found Amaey to be very content and happy and he never saw himself as sick.

Which is so true of Amaey and that is why she was very surprised when I told her that when we left the hospital Amaey said bye to the hospital and said, I will never come back again. I also told her about the instance when Amaey told me that we should sue his doctor. I was so shocked that Amaey said something like that that I did not have any words come out of my mouth. For Amaey who believed that science could do miracles, someone who wanted ot work for NASA and go to Mars, what he was going through was just a blip, a passing, something that would be over and then he would move on to real scientific things.

She said she was suprised that Amaey thought about that but she understands that he must have been very angry and that was his reaction to the way things were going.

I told her that Amaey was very picky about people, when she was to meet him the first time we were not sure how he would take it and once she left and we asked him if she was ok, he said, yes, it will work out. She laughed at this and was very happy that Amaey liked her and approved of her. She thought he was a great kid.

The turtle

My friend Steph... sent this to me just as I was looking at the clock change to 9:50pm.
--
A great deal of mythology exists in regard to the turtle. In the Far East, the shell was a symbol of heaven, and the square underside was a symbol of earth. The turtle was an animal whose magic could help you unite heaven and earth within your own life. A symbol of the turtle was an invitation for the blessings of both heaven and earth.


-- You have one child in heaven and one on earth, you should adopt this symbol as your own.


Amaey's love for turtles, and all these turtles coming to meet us in Kauai were maybe there to unite Amaey with us and then take him with them. 


Steph, thank you so much for sharing this today.  Thank you!

4 months today

Yesterday was the hardest day I have had in a while. I blame it on the 2 Back to the Future movies I recently re-watched.

I wish I could change time and change what was to happen today. If only I could.... I would still have my baby here with me and this family would be genuinely happy again. If only....

But reality wants to show it's true face and rub it in our nose that life is different now.

I know the healing process is like the ebb and flow of the waves, some days will be easy and some days the tide will sweep over everything.

Unfortunately as time passes the reality that Amaey will not return is hard to bear. Each hour from yesterday and today are taking me back to Sept 25 and 26 in Tel Aviv. So much pain, so much loss, so much love.

For the first time in my entire life I cried with fear when my sister Mona called me in my hotel room at 11 something at night on the 25th. I cried that I could not take it any more. I cried that we have never asked for anything and we have done everything possible for our dear child... what more does god want from us. It just seems so unfair. And then Apurva called to say Amaey was asking for me, I should come to the hospital and I left Arjun sleeping alone in the hotel room and ran to the hospital not knowing what was really happening.
But he looked calm. It felt like the tide might pass. He was looking comfortable for the first time in many hours. We had been through this, in the ambulance in 2010, we had been through this in the ICU in 2009. This was no different. Maybe Amaey will come out of it. He alwasy did. So I sent Apurva to the hotel to sleep and come back again in the morning with Arjun. But in a few hours I had to call both of them to the hospital... and now I cannot change what has happend. I never will be able to.

I love you Amaey, wherever you are, I hope you know that you are truly and dearly loved. 

Dil Aakhir tu kyun rota hai (heart why are you crying)

I watched this Bollywood movie on my way back from India. There are a few poems interspersed in the movie and one really spoke to me. It was a fun movie and well made, I did not expect to be in tears while watching it... but I don't expect to be in tears when I hear science news and quest on radio either.

An english translation is in this poem

http://youtu.be/qPvthTYiWoI

Jan 22

Davina gave me a card along with a cd when we left for Kauai to scatter Amaey's ashes. Since we had to pre-pone the service I did not get a chance to read the card and then I just could not find it. Today we were cleaning the house and I found it... It was meant to be for today because today I'm missing Amaey a lot. Today is the 22nd, we were packing to leave for Israel. That day in September was a stark difference from today. Today it's just Arjun and me in the house, a very quiet house. On that day we had a house full of close family and friends that were helping us pack with a very heavy heart and a lot of hope.

Reading this card brought some calmness in my turbulent heart.

Here is the card--

When cherished ties are broken, and the chain of love is shattered, only trust and strength of faith can lighten the heaviness of the heart. At times, the pain of separation seems more than we can bear, but if we dwell too long in our loss, we embitter our hearts and harm ourselves and those about us.

The Palmist said that in his affliction, he learned the law of god. And in truth, grief is a great teacher, when it sends us back to serve and bless the living. We learn how to counsel and comfort, those like ourselves who need comfort and are bowed with sorrow. We learn to keep silent in their presence and when a word would assure them of our love and concern.

Even when they are gone, the departed are with us, moving us to live as, in their higher moments, they themselves wished to live. We remember them now; they live in our hearts; they are an abiding blessing.

May his memory be a blessing.

Block

My friend Raj was asking me why I haven't writen anything on the blog for a while... It has been hard because so much is going on. In India we were really busy with Apurva's dad being in the hospital. I could not enter the hospital and I did not go to visit him but Apurva fell sick and I had to do the day shift. First day killed me....
But then I had enough time to go over things in my head and rationalize. The next few days became a bit easy.

It seems like I'm in a phase where I'm inside myself now. Instead of emotions coming out they are staying inside and I'm trying to figure out how to live and how to move ahead and how to keep going without breaking down. This has proved to be very tiring and exhausting for sure. But much needed.

Apurva has had to be in India and that has been very hard. He was in India for a month and then came back with me and had to go back in a week because his dad's health became critical. On Jan 16, his dad passed away in the ICU. Apurva said that when they removed his ventilator it almost seemed like his dad had a smile like he had seen something.... Apurva said that during the 4 hours he sat with his dad in the room after he had passed away he had several visions of Amaey and his dad deep in conversations. He said it was so real that he cannot express himself. Amazingly, he had that same vision 4 times.

In a strange way, yes I can see Amaey and his dada deep in a conversation. The two of them were so similar, so intense, so single minded.

Farewell Ammudada. We know that Amaey and you will take care of each other.

Compassionate friends

My friend Sonal suggested that I check this site. She said that their facebook page was a good resource... I already started receiving some poems that I like and can relate to. I was looking for resources for Arjun and like this poem they had on their site http://www.compassionatefriends.org

Siblings Walking Together

(Formerly the Sibling Credo)

We are the surviving siblings of The Compassionate Friends.
We are brought together by the deaths of our brothers and sisters.
Open your hearts to us, but have patience with us.
Sometimes we will need the support of our friends.
At other times we need our families to be there.
Sometimes we must walk alone, taking our memories with us,
continuing to become the individuals we want to be.
We cannot be our dead brother or sister;
however, a special part of them lives on with us.
When our brothers and sisters died, our lives changed.
We are living a life very different from what we envisioned,
and we feel the responsibility to be strong even when we feel weak.
Yet we can go on because we understand better than many others
the value of family and the precious gift of life.
Our goal is not to be the forgotten mourners that we sometimes are,
but to walk together to face our tomorrows as surviving siblings of
The Compassionate Friends.