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.
Thursday, June 28, 2012
Tuesday, June 26, 2012
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.
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
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
Monday, June 25, 2012
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.
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.
Thursday, June 21, 2012
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.
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.
Friday, May 25, 2012
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.
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.
Sunday, May 20, 2012
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
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
Friday, May 18, 2012
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.
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.
Tuesday, May 01, 2012
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
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
Wednesday, April 25, 2012
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.
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.
Tuesday, April 24, 2012
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...
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...
Monday, April 02, 2012
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.
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.
Tuesday, March 20, 2012
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...
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...
Tuesday, February 28, 2012
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.
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.
Saturday, February 25, 2012
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!
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...
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...
Tuesday, February 21, 2012
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.
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.
Tuesday, February 07, 2012
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.
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.
Friday, February 03, 2012
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?
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?
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