This week

This week was hard. Just plain hard. Not having Apurva around did not help either.
I haven't cooked once this week. Clothes are where they were left, mail still sitting unopened. Kitchen sink is pleading to get some attention. The dishwasher is still full and I'm sure the laundry baskets are in a distress state. I just heard Arjun wondering if there were any washed Jammie's.

Yesterday my niece's husband was over for dinner. He was visiting the area for work. I know he likes shrimp and so does Arjun, so I thought we will take him out for dinner, but it was so hard for me to make dinner plans or think about a restaurant and once I found couple, calling to make reservations seemed too much. Finally, he suggested a place and we went there.

However, today was the hardest. I have decided to start Kids & Art back again. And we plan to do our first art workshop on Oct 20th. I had sent flyers to the social worker from LPCH and as I was driving home from work I got a call from a mom from the hospital who had seen the flyer and wanted to sign her son up for the workshop. I don't know what happend to me as soon as I heard the moms voice? I don't remember what she said, she told me her and her son's name but I was not there. I couldn't wait to cut the conversation short and hang up. And that is what I did while trying really hard to control my tears. I did not want her to ask me about my connection to the cause, about my child and how he was doing in treatment. I suddenly felt like I did not represent hope, what am I going to say to her... Just hearing her voice took me right back to the waiting room, I was there with all the families, waiting. I could see all the kids... On their devices, some on the hospital Nintendo. Some on wheelchairs. But I did not see Amaey there. It was as if I was transported there but no one could see me.

It was really hard. Just like all the firsts... I was taken by complete surprise at my reaction to a completely normal situation.

2 years already

I'm seeing you everywhere. In your bunk bed the night before we left for Israel, only your desk lamp was on and I was slightly upset with you because you wouldn't take your medicines... There were only 20 something to take. I was feeling helpless but I had so much hope that a miracle was in the works.

I remember you driving with Arjun and bhai and bb to the airport. I think that is the last time I remember you smiling.

You were tired but hopeful that you would come back with a different life.

As we got settled in the private jet, I was worried but also making plans that I would call my dad to come and help me out in Israel after we found an apartment and arjun and pa would have to leave. I was looking forward to take care of you and get you strong and ready for a new life, the life after cancer.

I'm sorry I made you go in the MRI machine when you really did not want any more intervention, I did not know that it was your second last day in this life.

I'm sorry we decided not to put you on a ventilator to prolong your life. We wanted you and wanted you to be with us but we did not want you to be in pain and suffer and hook you up to all the devices just for our selfish reasons.

I'm sorry I had to ask you to leave... Take the hand of the new day that was holding its arms out to you to go and join the sun and the constellations and the world beyond. I did not want to let you go but we know that there was a better life waiting for you.

I love you and miss you and wish you the best in your new life. I'm sure I will see you somewhere, I know I will recognize you. I know I will.

Cancer training for Doctors

Just as it is important to have a child of your own if you are a pediatrician, NOW, I do really think that it is absolutely important to add cancer cargiving in the training for oncologists. I would not wish cancer on anyone but if you do not know and are not in the receiving or caring end of cancer there is really no way of understanding your role as an oncologist.

If you are an electrician, you have hands on training, if you are a hair dresser or colorist you have worked on real hair, if you are a surgeon you have operated on. If you are an oncologist do you really know what all those rounds of chemo are doing to the child? To their family? 

One would argue that the oncologist is getting hands on training by working with so many different patients. But is that training or is that care, or is that doing your job and crossing your t's and dotting your i's? They use the same drug on all the kids that have e.g. ALL. Whether it is a 3 year old boy or a 2 year old girl. Each body is different and each body will handle the medicine in it's own unique way.  

When they send a 9 year old home and he is expected to take almost 22 pills in 1 day, Have you tried to take 22 pills in a day? In their training they should be given 22 sugar pills to take at precise times, with food, without food, just before going to bed, make sure they haven't had milk 30 minutes prior. 4 of these 22 pills are so big that even an adult throat would choke on it and gag so cut the pill in half so now we are saying 26 pills a day.

How about constantly watching for a fever, having a bag packed and ready incase you have to run to the hospital at wee hours.

How about dropping everything, even your own special b'day or weekend getaway and running to the hospital to be told you cannot go home now that you have spiked a fever even though we have no idea what it is and we won't know for the next 72 hrs.

Following a protocol and administering medicine is a very small part of treating a child with cancer, learning to treat the whole child is the key training that is lacking in modern medicine. The doctors are so intent on removing the cancer from the child's body that they forget to think about what will be left in that body once the treatment is done. What might be left is an empty shell and a reminder to the parents that they were given all the paperwork that talked in great detail about all the side effects that can occur.

It's been a while

It's September, almost 8 months since I wrote in Amaey's blog.

Where was I? What have I been doing? Why did I not find the need to write, after 8 months?

I'm here, very much here. I took a consulting job in October of 2012. As soon as I started working there I realized that I had to live a double life. No one other then the founders of the company knew me from before. They were the only ones who knew about my journey and my loss. Everyone else looked at me as another employee, hired because she is good at what she does and coming in to do her work and leaving to go back to her family, or whatever it is she does.

I kept looking at all my colleagues and then all the people I met post Amaey and made a decision that no one needs to know about me. It's very personal and I don't see the need to share. They did not know Amaey, I don't want to trivialize his beautiful life in the few words I will here, oh I'm so sorry for your loss. At work I did not want to be judged by what I was accomplishing or not,  by the burden of my grief. That was my burden to carry.

And so days became weeks and then months. I had so much to write, so many conflicts to talk about, so many moments of running out to the bathroom because something made me cry. But to the world within my office, it was nothing... no one even noticed me get up, or wipe my eyes. No one wondered why my cubicle is so sparse. My husband stopped by work once and made that observation. And I said to him, I'm anonymous other then what I'm here for so instead of decorating my area to show my design philosophies, or the vacation photos, or quotes I like, I prefer to share all of that with my work.

And so that it how it has been since October 1 2012.

So why the sudden urge to write again?

Because I gave myself permission to do so. Because I don't have to prove anything to myself, anymore.

I went back to work full-time, in an office setting, after 6 years and I did not want to be held hostage to that fact. I knew I was good at what I did but I did not know how it would be, going back to work and living this new life without Amaey, without the hospital, without one part of my life. I did not know how I would be able to handle people, ordinary people, going about in their life and seeing them day-to-day and they seeing me back but not knowing that I was still grieving and broken inside. I did not know how I would handle the responsibilities bestowed onto me. I knew that people were not looking at me differently, because they did not know me. But I knew that I was critically analyzing every move I was making. Every word that came out of my mouth seemed odd. Lunches, went with me suddenly bitting my tongue when people started talking about their kids.

I knew that if I talked about my past 6 years, they would not know what to say. And they would start weighing every comment they would make. I would suddenly be reminded of my loss even though no one meant to cause any pain. So being a ghost, someone that comes in and leaves felt safe. That life felt like one I could lead and that left me to my thoughts, my conversations. I take a walk every day at work and that is my time to think of what Amaey would say about all the things that happened that day. I wasn't sharing him with anyone or apologizing for anything, or being left out from any conversations. I did not feel like people suddenly stopped talking because I walked in. I wasn't the poor employee who had been through this immense tragedy. I was just I.

But I don't need to be be worried anymore. I don't have anything to prove to myself. I'm comfortable being I. And there is one person to thank for this... a dear friend who believed in me and gave me this opportunity to work with her. She knows who she is and I'm forever grateful. If it weren't for her, I might not have had the chance to pick up life and go with it. I had stopped believing in the silver lining... I still don't know what it is, but I'm noticing it.

I spoke

Last night was a thank you dinner from Light The Night for all the top tier fundraisers. Amaey was the 2012 Memorial Honoree for San Mateo so they asked if I would like to come and say a few words.

I wasn't sure at all if I wanted to do it. But the recent events in life have made me question a lot of things about Amaey's treatment. I was talking about that with my sister and she said that I should talk about it and write about it if it is that important to me.
So I said yes, I accepted to talk at the event. I'm very grateful to Davina for being there with me. I'm not sure that I would have had the strength to stay through the entire program if I were by myself. I think I would have left...

My goal was to let people know the facts from a child's perspective and a parents view. I sensed the room getting darker and quieter as I started talking. I was shivering but I did not fall apart. I think Amaey was giving me the strength to tell his story.

This is what I feel and that is exactly what I said--

I have trained through TNT and done 3 half marathons. I have walked and participated in Light The Night, I have been nominated for the Woman of The year campaign through LLS and won, and during all those times I have come up to the podium and talked about hope and felt proud that my contribution, however insignificant, was going to help find a cure for my son who had ALL.

My son Amaey, was a man of science. He believed that science will cure him. He believed that he was going to kick cancer in the butt. He believed in everything his doctors made him go through. Amaey was diagnosed with ALL in 2005, when he was 3. He walked in the poking lab innumerable times, had countless blood transfusions, had many rounds of chemo, lost his hair, gained it all back, lost it again. He would get completely PMS on me when he was on steroids. He would be in and out of the hospital, had to miss school and playdates, and birthday parties. BUT, that was fine, because he believed in science and he was certain that this was but an inconvenience and it will all be in the past. 

In 2008, a month after his end of treatment, when we went in for a routine follow-up we found out that he had relapsed. This time we were told that it was because he is a boy. We see this kind of testicular relapse in boys. The cancer seems to find a hiding place in the testicles.

Fast forward to April 2011, a month before Amaey was to end his second round of treatment, we had to take him in to the hospital because he had a fever. Later that day my husband called me from the hospital to tell me that Amaey had relapsed, again, but this time it was with a chemo induced cancer called AML. A very aggressive kind of cancer and he might need a bone marrow transplant.

Being an ethnic child his chances of a match were negligent and yet Amaey found a 10-10 donor. In July 2011 Amaey underwent his bone marrow transplant and his hospital stay of 55 days in quarantine facility is what I want to talk about today. How do you lock a 9year old up in a room for 55 days? A hospital stay that started as a 30 day stay and kept extending until day 55 definitely did one thing to Amaey, he lost his faith in science. And worst still his spirit died. In those 55 days, he was undergoing intense radiation and was constantly hooked to medication and morphine.

A child that loved to talk, play with his brother and friends, a child who loved his piano so much that we got him a keyboard in his hospital room. That child lost his spirit. His spirit to live. It is all wonderful that we are raising funds to find the cure. But we all need to take a step back and look at the cost at which this cure is coming to these kids.

I don't think the doctors know what they are doing when it comes to the top tier critical cases. At that point it is a crap shoot. Let's tweak this medicine, oh that's messing with the kidney's OK let's add these 2 medicines, oh now the kidneys are fine but the liver is hit hard. All this tweaking and testing is happening on a live patient. A young body, a young living life. All the doctors are focused on is to treat that disease while they need to take a step back and look at the whole child. Look at the child's genetic make up. Look at what a 55 days stay in the hospital is doing to the child holistically and spiritually. You might end up removing the cancer from the child's body but are you hollowing them up and also wiping their spirit clean? Are you striking a balance?

When my son Amaey was diagnosed with ALL in 2005, A team of doctors sat us down to tell us what it meant. Looking at my stunned and worried look one of the doctors said, Mrs. Shah, let me tell you that if you were in the market to shop for cancer, this is the best kind you could buy. It has 85% survival rate. Your son is in good hands at this hospital.

Today in 2013, I do not have my son anymore. I'm standing here as a bereaved parent, a grieving mother.
In the year and 4 months since Amaey passed away, we have lost 3 other children. All undergoing bone marrow transplant. Their cancer was gone, technically their transplant was a success but they all died from an organ or internal system failure. These kids were ages 16, 9, and 12.

If all you, supporters,  that are raising funds are doing so to eradicate cancer, you need to make sure you ask for more. You need to make sure that you ask for your money to go towards a more holistic treatment that is based on genetic testing so that we don't end up telling another parent that they have shopped for the best kind of cancer and 6 years down the line they are making funeral arrangements.

Does it get better?

Life has a strange way of making connections. Some people have come in our lives by accident, some were meant to.

We met this family at a Kids & Art art creation day at Pixar, almost 4 years ago. And it so happens that the dad and Apurva went to college together in India... small world right?

We stayed in touch with the family over the years while their son and Amaey went in and out of treatments and relapse. In April 2011, when we found out that Amaey needed a bone marrow transplant apparently so did the other child. When our friends were hosting Bone Marrow camps they were looking for donors for both the boys.

Amaey found a 10-10 match and had his transplant in July and the other child had a double cord blood transplant in August. Amaey's cancer never left him, it came back after his transplant and he passed away September 2011, the other child got discharged from the hospital and his cancer was gone!

I kept in touch with the mom. Kept checking in once in a while. I can see that she must have felt odd to contact me more often because of my loss but she still did check-in to see how I was doing.

We met her at a restaurant few months ago and she said that he was in and out of the hospital with GVHD but we took it as, it's been a year since his transplant, he is out of the woods.

On Jan 10th as I was driving Apurva to the airport I saw her name on my cell... I would not have picked it up because I was driving and I was getting late for the airport but something made me... I picked up the phone and she said Purvi.... and my heart stopped. I asked her if everything was ok. NO IT WASN'T. Her son passed away the night before in the hospital from GVHD complications. I couldn't see the road anymore. I screamed so loud... I was so upset. WHY WHY WHY.

When I went to meet her the next day she asked me a question... does it get better? I did not know how to answer that question. I did not say anything.

Now that I have had a chance to think about that question this is what I have to say-
Dear friend and fellow mother, the first of everything will be hard. First year in itself is very hard, each month when that date rolls in, it will be very hard but something changes after the first anniversary. The loss, the missing, the grieving becomes more part of you. Now you are not grieving with the world but grieving inside, by yourself. Because everyone else has moved on and they are not sure if they should bring the topic out and if they do will it hurt you.

Yes you are able to breathe a little better and you might not end up crying at everything but you still won't know why you suddenly teared up.

Does it get any easier? I can't honestly say yes, yet. Because I miss him so much of late. When I light his candle every morning, yes we still do that, I seem to be having much longer conversations. I miss him because I will soon be giving out the 2nd Amaey Shah Passion for Science Award. I miss him because I'm preparing for a middle school graduation when I should have also be planning a 5th grade graduation. I miss him because I gave away the red sofa where I snuggled with him. I miss him because... I just miss him.

Does it get any easier? In some ways, yes. I can see his friends and feel love and not pain. I can spend time doing things that he used to like. I can cook things that he loved. I'm willing to pick myself up and ask, why am I here.. what should I be doing next.

Skyfall

Today on my way to work I was listening to Adele singing Skyfall. It was so mesmerizing. I kept hitting play and rewind until I got to work.
This was the first time I heard it in the intimate setting of my car. It sounded amazing in the movie but today, in my car, it felt like a special performance for me. As soon as I heard the piano playing my eyes teared up, I could see Amaey sitting in the back, looking out the window with one ear listening to the tune and the other taking it in so that he could play it at home.
I wondered if he would like it. If he would like her voice, or the tune, or the piano rhythm better.

I liked it all. I haven't touched the piano since summer. I stopped my lessons because my teacher went on maternity leave. I know she comes back in Feb, will I go back?

I know Amaey would have been preparing for his January performance. Wonder if he would have picked this tune to play? Arjun is performing, he will perform on his electric guitar for the very first time.

I can't get the Skyfall tune out of my head. I find myself swaying and I do see a smile on Amaey's face and I see the gears turning in his head as he sits on the piano... wondering how he will play the tune.

The Runaway Bunny

I wonder how many times we have read the Runaway Bunny to our kids... I can't really count it. Maybe not as many times as The Goodnight Moon but it's still innumerable.

Whenever Arjun has time off from school, we run away. It is hard for us to be home during holidays and breaks. As soon as we are back from a getaway, we plan for our next escape.

As a family, one day we were talking about our travels. We were reminiscing about all the beautiful holidays we took with Amaey. Even when we could not get on a plane we would go to driving distances like Roseville, Sacramento, Santa Barbara, LA, San Diego, Palm Springs. The boys loved being in a hotel room. Their happiest moment was to order food in the room the day we reached. That was a rule, we ordered our first dinner in and watched TV.

When we started talking about life after Sept 25 2011, we really surprised ourselves.
We went to Hawaii in November to scatter Amaey's ashes. In December we went to Mumbai to see Apurva's dad because he wasn't keeping well since he heard about Amaey. During the February ski week we flew to Michigan to be with Apurva's sister and her family. We went skiing with them. For spring break we took off to New York and spent time with family and friends and we did a lot of sightseeing. Come Summer break, we took Arjun off school a day early and left for Rome, Venice, Florence and ended up in London in July where Arjun and I spent 2 more weeks and then cam back home just in time for Amaey's 10th b'day. His first b'day where we were celebrating without him. Come November, Arjun and I were preparing for our trip to Mumbai for cousin Aditi's wedding. We closed the 2012 year with a road trip to Phoenix, Arizona with our dear friends the Moussa's.

What does 2013 have in store for us? My mother-in-law will be spending couple months with us and we are really happy for that. We have a few places in mind for travels in 2013.... I know we will get there one way or the other.

What are we running away from? Or what we running to?
Traveling brings us closer to each other. We love to travel. That is definitely something we have in common. We love to try different places, new food, and sight see. We like exploring new hotels and destinations. We feel like we are doing something Amaey loved to do. Something he looked forward to do. Maybe he was so bound with limitations that going away felt like a wonderful change from his life. We also feel that Amaey is with us.
He does show up in strange places and in strange ways. While we were at the Phoenix Desert Botanical Gardens Luminaria event, we were completely taken by surprise to see 3 beautiful installations of names and messages of people touched by cancer. Apurva picked up a bright colored ribbon and our Amaey's name is floating in that mix now. While we were sitting in the outdoor cafe at the Heard Museum an Indian family sat somewhere around us... the only reason I tried to see who it was was because this kid had his head down and all I could see was the shape of him and his dark black hair and his hairstyle. The structure was exactly like Amaey minus the glasses. His older brother was wearing the glasses. There are many examples... many instances that I should start making a note of.

Does this read like the Runaway Bunny? it sure does to me. But the bunny does come back home. And when I came back home from my Phoenix holiday, the 2 orchid plants that some wonderful friends sent to us during his funeral, were blooming, again.

Live for the living

When I was sitting by myself while waiting for my lunch in the lobby bar I was thinking that usually I would have craved this alone-me time. But I don't seem to need it as much right now. Because there are times when I can be around people but still be shut off and alone. And after thinking a little more I realized that all 3 of us have been that way since we lost Amaey.

Is this our coping mechanism, is this because we are grieving and still learning to get back to life. I don't know. But I do know that we are all still grieving in our own ways.

For me the hardest part of losing Amaey is that we have lost something that bound us as a family. I think over the years, his illness brought us closer. It made us a stronger family. I would have rather lost the cancer from our family rather then have lost him. But that is not the case, so how do we reconnect? I have been asking myself, how do we find the strength to reconnect and find that love and laughter. I have been asking myself, how can I keep Amaey in my heart and soul and still pick up the pieces and become a family again. I know it is very important for me to become a family again and feel the love and bond again.
While I was thinking about all these things a question came to my mind... what did I look forward to most when I craved to get away by myself? My answer to this question was an eyeopener- I said, that I looked to reevaluate my life and get recharged to take get back to whatever was thrown in my path, with a fresher pair of eyes. The needed rest helped me get back and sit in the hospital, the rest gave me a break from the driving back and forth from the hospital and the running right back for transfusions.

This got me wondering- If I could have that attitude then, then why can't I have that same attitude now? What I had then was so hard on the family too. If I take Arjun's attitude then what I'm mourning is my baby not being here with us, amongst us, but he is free of the disease, he is free to start afresh. If I stop being selfish for a second, then I can say that he is free of the borrowed life he was living to go start a new life of his own.

If I could live the life of constant uncertainty. If I could live a life of pain while watching him suffer on days when he was really suffering. If I could live a life where our family was constantly fragmented with hospital stays and work and school. If I could live a life of guilt and fear. Why can't I, now, live a life where I focus my energy on making some of his dreams come true. Why can't I live a life where I can take what is left and nurture it and honor him by becoming a stronger and loving family.

I read this on our trip to Phoenix, it was in the spa-

Destiny
Walk the path of your destiny with purpose and an open heart.

Happiness
Happiness comes when your work and words are of benefit to yourself and others.

I believed, after Amaey relapsed the first time that it was my destiny to stay home and take care of him and get him better and help balance life so that Arjun can grow and live a normal life. Apurva and I were going through our own struggles and we did not really have time or energy to dwell on our couple's emotional health.

Until then I was always looking forward for his treatment to end and get back to my life and get a job and do all the normal things that that I did before. But after his relapse, I tried to understand that my destiny was in the here and now. Focus on what I have. Now destiny has changed one more time and I ask, what is my role, what is my destiny now.
If I have survived the loss of my 9 year old and I'm still standing, there must be a reason for me to be in this world.
I had read an article on WSJ called war tragedies strikes family twice and there was something a father wrote after trying to commit suicide after his son passed away in the army, that really made me think--
"You have to make a choice, either I'm going to live for the living or I'm going to stay living for the dead".

Green shake

Today is the first time I made our green shake after almost a year and 3 months.

I make a smoothie almost every single morning. I have some usuals and then I try some new recipes.

I started making the green shake after doing a lot of research on the benefits of wheatgrass. I made it for Amaey and made it every single day. The wheatgrass and spirulina is what I wanted him to get to help him avoid transfusions. Frankly, we did avoid few transfusions and his doctor would ask me when he was bordering low on hemoglobin if I wanted to transfuse him or if I wanted to try my system and then check back in few days.

It helped us too. We all needed to be really strong and avoid colds and illness because Amaey's immunity was so low.

I do not know why I picked today to make it? I know that after Amaey passed, Arjun could not eat or drink anything I use to obsessively make for Amaey. 

Here is the recipe-

Today's green shake had-
2 cups spinach
1 avacado
1 apple peeled
2 cups apple juice
1/2 cup water
1 scoop whey protein
1 sccop wheatgrass (you can use fresh wheatgrass juice too)
1 scoop spirulina

Little things count

We decided to change the color of the walls in our living room. We went from our sunny marigold to a Tea cookie, butter milk. Next, we are donating all our sofas that are in the house. 1 from the TV room and 2 from the living room.

The donation truck will stop by today while I'm at work.

As I left the house this morning, I spent a few minutes at each sofa. I tried to smell Amaey in them. We spent so much time together. He would fit just perfect on the red sofa. His favorite thing was to read and take a nap there. I would put all the pillows and put a nice blanket on him and then he would give me his gorgeous, big, no cares in this world, and warm smile back to me. I would tickle him and kiss him and go lay down on the green sofa which was on the opposite. I would lay there looking at him and enjoy just watching him.

Arjun has used the green sofa as his tent and fortress. He would bring all the pillows from around the house, move the coffee table, bring some blankets and arrange everything in a way that would make it easy for him to wiggle in and then close the doors to the world and open the magical world inside. Both the boys loved to be in that make believe world.

The cushions from the sofas have warmed many butts while sitting by the fireplace and enjoying a cup of hot chocolate or roasting marshmallows.

The black sofa in the TV room has it's own stories to tell. We have spent many wonderful hours watching TV, playing on the play station, playing lego, jumping on it, jumping from it, and many-many hours worrying about when Amaey would have his transplant, which hospital might be better to move him to. Many hours talking with doctors behind closed doors figuring out a plan. Many hours talking with the doctor in Israel and finally deciding to take Amaey there.

Will our life be empty without those sofas? Sure our rooms will. And sure, we will fill them up with some other furniture and in time those sofas will become distant memories and we will start making new ones in the new space.

I guess that is how life goes. Out with the old and in with the new. But what really counts are those little things. Those little things that bind you to your memories. To the big things in life.

Good words

I was at a spa in Phoenix and saw these 4 frames. Words that I would like to share -

Happiness
(Good fortune)
When one's spiritual
needs are met by an
untroubled inner life.
Happiness comes when
your work and words
are of benefit
to yourself and others.

Harmony
Inner peace
the balance or
"just rightness" of
things in proper
proportion.

Tranquility
The peace that
comes when energies
are in harmony,
relationships are in
balance.

Destiny
Walk the path
of your destiny
with purpose
and an open
heart.

Turning a new leaf

Nov 16, 12:30pm) 14hrs to a destination. All in one flight. Crazy how I ended up getting myself into this. Frankly I did not realize when I booked my flight. After my debacle with the Emirates flight I think I'm becoming phobic of flying.

But that is not good. I like to travel and I want to be able to travel. So I decided that I was going to try harder. I went and bought myself Bose headphones, something I have waited for a long time now. then I bought Arjun and me neck pillows. This time the way i have packed my hand bag is important too. I have one bag with my socks and slippers and cream. Another bag with protein snacks. Another little bag of grapes. A ziplock with all my herbal remedies. An empty bottle to fill water and one for hot water for tea. I'm set right. Sounds like a pro to me. 1 hour down, 13 more to go.

As soon as we sat down I sprayed my nose with saline and put artificial tears in my eyes. Next, cream on my feet and then I covered my feet with my big soft orange socks. Checked my inflight magazine to see what movies they have, took a codeine with Tylenol before my tooth inflamed and rested my eyes for bit.

One other important thing I have decided to do is keep a positive outlook the entire flight. No complaining if the seat is small. No grumbling if the service sucks. No attempts at unbalancing my chakras.

I'm going to read the night circus, or keep journaling my hours away. Arjun and I have cards so we can play a game of BS if we want. Most of the time I hope to be tuning the world out with my noise canceling headphones.

2:00) Oh it's been 1.5hrs and they are bringing food out for everyone. Total Recall might be the perfect onflight movie to watch. Bye for now.

3:20) Lunch served and eaten. I had asked for Hindu vegetarian meal. Who gives chickpeas on a flight? Seriously Cathay? Don't you have any regard for thy neighbors? Well I didn't eat them, I just ate the rice, salad, and green beans but still...

I started watching total recall and gave up within 15min. Big bang theory episode was much better. Arjun on the other end is cracking up over men in black 3. I'm not sure what I plan to do next. Maybe I should get up and walk a little. Yup that's a good idea.

4:50) I went and walked up and down the aisle. As I was walking I saw that they had beautiful, fresh, red apples. Oh fresh fruit to eat up in the air is always great. I took my juicy apple and sat down to watch Step Up Revolution. Just 15 min in the movie, I noticed that the gentleman sitting in the seat next to Arjun's wasn't looking to good. I asked his wife and she said that he was sweating a lot. I told her that I do reiki and if she would like I could do some healing on him. She was fine with that so I went around and did some reiki on him. He was sweating a lot, I could feel the tingling in my hand and I could feel the warmth coming out but I felt it was really important to make an announcement and see if there were any doctors on board. Two doctors came right to him and I went back to my seat. They have moved him to another seat where he can lay down and rest. He is looking better from before and I do hope it stays that way.

No I'm not going to let anything change my positive attitude. No it did not bring back intense memories of Amaey in the plane, hooked to saline, fading... Oh I turned back to see that they have started oxygen for him and the doctor is back taking his pulse. Swati did that on the flight, she kept checking on Amaey. I could see the worry on her face, when she is thinking she tends to adopt the thinking pose. Arjun kept looking at my face, he could see that I was getting tensed and worried. I was trying really hard not to. I kept telling myself, it's ok. it's ok.

It is so amazing to me, such a full flight and no one really knows what is going on, someone could be really sick, someone could be going in labor, there might be a bride or groom on the flight, someone taking their newborn baby back home for the first time... or a 9 year old might be making his last flight... ever.

6:33) exactly 6 hrs, but who's counting?

The gentleman is stable, he does not need oxygen anymore. His wife seems relaxed too. I still haven't finished the movie because the entire video system went down. Wonderful right? Arjun is busy playing a game on his touch. I got up to get some tea for me since this is usually when I make tea and have a snack at home. Arjun and I shared a veggie sandwich too. The aisle is bustling and I have a butt shoved in my face with people walking like zombies since the TV has been taken away. I wonder if this is their way of getting people to move about... Smart.

My smart plan has been- to stay up the first half of the flight and then sleep until we get to Hong Kong. Then the flight from Hong Kong to Mumbai we should stay up so that when we reach home around 2am, we are ready to crash.

12:40, I think it's am) step up revolution was beautiful. The choreography was breathtaking especially of this dance in a museum. Wow. Arjun ended up watching it too. I was getting sick around that time. Feeling a headache coming and getting that eeky feeling I tend to get in the plane.

6:33pm in hong kong) we are about to land and then hustle for our Bombay flight which takes off in an hour an half.

4:17am SF time and 8pm hong kong time.) We disembarked our long haul flight and went through transfer and then to our gate for Bombay. We only had an hour in between but luckily the gates weren't that far apart. Once at the gate we made a b line to the food court. I ate a veggie bagel sandwich and Arjun had a chicken sandwich and mango juice. Now we are on our second flight, thus time to Mumbai. My strategy for this flight is to stay awake and read. Arjun has to complete some homework. Right now he is playing doodle jump.

9:10am, not sure what time it is in whichever timezone I'm hovering over.) I definitely wasn't feeling great after we sat in this plane and so I decided to sleep. It cut 3 hrs away and now we have 1:10mins before we land. I'm officially done with this journey. Seriously, are we there yet?

11:45pm Bombay. 10:25am SF) yes the eagle has landed. We are still taxing on the ground because they not have a gate for us yet.

This concludes our 24hr journey nice we left our house in SF. Also it is 17th night and by the time we clear customs and drive home it will be past midnight here 18th morning.

It took us a long time to track down our driver because there were a lot of private taxi drivers thanks to the transport closure... families must have rented private cabs to bring their loved ones home. We get in our car and get on the road and I realize that if we had arrived any later, we would have had to sleep at the airport because the roads were completely empty and as we were driving away, they were closing roads behind us.

We were so glad to reach home and be on stable ground and a real bed. I managed to keep my end of the bargain, stay positive.

Sandy

I read the newspaper while having my tea in the morning, before I leave for work. One day I read the article on the nanny that killed two little kids she was taking care off. I go to work and one of the bloggers is blogging about that, about the support this mom needs. I could not imagine the grief on the mom’s face to find her kids in the bathtub, dead.

Then Sandy hits New York. I read about a mom whose car got stuck in the rising water and lost hold of her two little kids after she unbuckled them from their car seats. A day later they still haven't found those kids. Read about 2 teenage sisters missing. After I reading these articles, I have been asking myself, is it any easier for a parent who looses a child in such circumstances? Is the pain any different for them?

Some people might be thinking but not saying this to my face, that we should have seen it coming. He had cancer for god’s sake. Does that prepare a parent? The fact that their child has been diagnosed with cancer, does that mean parents should start preparing themselves?

A family friend of ours had a son with down and he drowned in a swimming pool and died. As an outsider what comes to your head, maybe it is better for the child, what kind of life would he have had growing up. Maybe it is better for the parent, they would have had to take care of this child even in their old age. But as a parent, do you see it that way? Do you look at your children as loss and gain? Do you plan on cutting your losses and moving on?

What does a natural calamity like Sandy teaches us about loss? New Yorkers were made aware of the devastating extent of Sandy. They should have prepared themselves. That mom should not have been out driving with her kids, people should have known better. Really? Are we to know that a storm will suddenly leave you roofless or even, homeless and worst of all, childless?

Do you call this destiny? Do you call this gods will? Was there a reason that the kids were swept away and not the mom?

With all the preparedness and technology out there to detect the biggest storms and hurricanes in this 21st century, there is nothing, nothing at all that can prepare one for the loss of a child. Whether the child was lost in a sudden accident, or after an illness, the loss of a child is one singular phenomenon that science cannot predict or find ways to make it tolerable. What Sandy teaches us is, loss comes in many shapes and forms, and we really have no control after all.

My Tea

My Yogi tea reads-

It's not life that
matters, it's the
courage that we
bring to it.

I started working full time from October 3rd. Yes it has taken a lot of courage to make a move in life. In the first week, I was having my lunch in the atrium by the waterfall and suddenly I hear Amaey, Hi ma this is Amaey, when are you coming home? It felt so normal that I just replied, I'll be home soon darling why don't you ask Vicky to make you some food and I'll be there. And he says, ok.

My baby is with me, and I know he is asking me whether I'm happy in life. I don't ever want to say no. I don't want him to feel that I'm wasting my time in this life that I have been left to live. Every morning I ask myself, am I living in the moment.

It is not life that matters...

Living legacy

For everyone that reads this blog, for whoever knew Amaey, I urge you to write your memories of him.  Memories is all we have and I know he made his own connections with people. I know he touched everyone in his own sweet way. Please share that and help us see that part of Amaey.

Someday, when Arjun grows and maybe has moved out... I know he will want to read this blog. I know he will stumble upon this wealth of stories and pain and joy.

I'm scared that if I don't write down all my little memories with him... over time they will fade. That will be such a loss. I want to capture them and treasure them. Please help me do that.

Love and remembrance

Yesterday we spent the day remembering ammu.

We took lunch to his friend Gabriel's class. The class of 2013, he might have been in that class. It was really wonderful seeing all the kids. What was most touching was the maturity and warmth of the kids. Whoever had been with him in various classes since Kindergarten, remembered him and made a point to let us know when they were with him. One child was truly amazing, he told me that he understood my pain and how I felt because he recently lost his uncle who he was very close to.

Gabriel helped us set-up and stayed with us the entire time. He did not go out and play instead he chatted with Arjun while they were waiting for the kids to show up.

In the afternoon we went to Skylawn. Yes there was a hawk there. A lone hawk flying around the overlook. We stayed there for a little while and left after the hawk had flown away. Pratish and didi were with us too.

The evening was warm and touching. A fire glowing and everyone settled down around it. David shared some words from The Dalai Lama on life after death. We opened it out for friends to share stories about Amaey and then we started our kirtan. Sugandhi started off with amazing grace how sweet the sound... Raj sang a few chants and at some point, yes I did feel the breeze, there was a rustling sound and I had to take my shawl off that I was wearing because I got very hot. I did not realize these chain of events until this morning when I mentioned them to Apurva.

You were there... with us. I know.

A life well lived

Today, look back and make a note of all those promises you made.
Today, take an account of all that you have.
Today, look ahead and assess the plans you have set in motion.
Then, stop.
Just look around you.
Take a look within yourself.
Now, stop again.
Just for today, do something that makes you genuinely happy.
Just for today, don't think about tomorrow or the day after.
Just for today, do something silly, eat something unhealthy, feel naughty, smile and laugh and love abundantly.
For a life well lived will be remembered forever.
For a life well lived will bring happiness well after you are gone.

September 25

We are planning to share today with family and friends and everyone that asks about you and thinks about you.

We decided to be outdoors, in the backyard where you loved to spend your time.

When you would wake up, you would share some tea from me and take your mug and your book and sit on the chair. Your glasses would fog up from drinking hot tea.
The rays of the sun would make you raise your head up, you would close your eyes and soak up the sun.
Such bliss would surrounded you.

We plan to have an inspirational talk followed by chanting and then your favorite dinner - mini idli with rice.

We want to be outdoors, we hope to feel you in the breeze and see you enjoy the warmth from the campfire, and glow up from all the love.

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.