I miss you buddy

I miss writing in this blog. I miss Amaey. I was missing him a lot so I decided to read his blog from the beginning and it was really hard.

For a diagnosis that had 85% survival rate and for a child at 3 to have a very likely chance of beating the odds, I'm left questioning the odds. I'm left at questioning the system.

I have tried really hard to not put the blame on someone but it will be 3 years since Amaey passed and I'm still very angry. I'm angry at the fact that we let him down. I'm angry that we did not do enough. I'm angry that when it's over, it's over there is really nothing more we can do so we should have done even more when he was here with us.

I'm angry at the treatment plan. Pumping more and more chemo is not really a humane way to treat a child. Why do we have to put kids through a protocol and treat them like a herd of cows and stamp them all with the same stamp regardless of their ethnicity and their genetic make up.

Why does the pharmaceutical industry get to decide how my child is treated.

When will there be a protocol that will not be scared of taking a case because it is not going to be a success case.

Sure there is someone to blame. If the doctors are blaming his genetics then they are really the ones to be blamed because they should have taken that in consideration after he relapsed.

I miss you buddy, none of this still makes sense to me. I'm still searching... searching for answers, searching for you.

Asbestos Awareness Week

I received an email that said the following-

Hi there!

My name is Heather Von St. James and I was wondering if you'd be willing to help me with a cause that means a lot to me!

Eight years ago, I was diagnosed with mesothelioma; a rare and deadly cancer caused by exposure to asbestos. I had just given birth to our daughter Lily, and was only given 15 months to live. After a life saving surgery that included the removal of my left lung, I made it my life’s mission to educate people about this deadly disease and it’s cause.

Asbestos Awareness Week is just around the corner and I was hoping you would be willing to help spread the word. Asbestos has been used for many applications in the past including building materials in homes, office buildings, and naval ships. It is STILL not banned in the United States today.

This year, I am asking bloggers to participate and spread the word about Asbestos Awareness Week by being a Voice for the Victims. You can find my awareness page here: http://www.mesothelioma.com/heather/awareness/

I hope you will check it out and share it on your blog. From awareness grows hope.. Each voice could save a life!

Hope to hear from you,
Heather Von St. James
http://www.mesothelioma.com/heather/

Heather, you are quite a strong and amazing woman to be continuing the fight. I'm really glad you are doing well and I'm happy to share your story with whoever will listen. I don't write in Amaey's blog that often but this is a good reason too. 

What Happiness Looks Like

I met Britt Reints at the BlogHer Pro Conference on October 2013. She spent some time at the Kids & Art booth and talked with all of us about our mission. She shared a little about her blog and asked me if I'd write something about Happiness for her blog. Here is the post Britt wrote on her blog-

What Happiness Looks Like: Purvi Shah and Kids & Art
Friday, January 17th, 2014


Purvi Shah lost one of her children to cancer. But today, she shares with us insights about happiness.

Her story is sad. There is no covering up the tragedy that is a child dying. You can’t positive think your way out of that.

Purvi, instead, coped. And she turned her coping and her care giving into something bigger than herself, and bigger even than her child.

In 2008, Purvi founded Kids & Art, an organization that pairs pediatric cancer patients with artists so that they can create art. That’s it. The organization doesn’t advance research or work towards a cure; it serves to help children find moments of happiness in the midst of their illness.

And that is everything.

I met Purvi and learned about Kids & Art when I attended BlogHer PRO last fall. I wanted to share her work, and I thought she might have some heroic words of wisdom to share about finding happiness amidst her grief.

I forgot that parents who lose children are not transformed into heroes or sages.

Despite my ignorance, Purvi graciously agreed to share her story with me. She agreed to talk about happiness, and I sent her the standard email with my interview questions.

It took more than two months for her to respond, and her answers humbled me. She admitted that the questions had taken her somewhere she needed to go but had been avoiding. She closed her email to me with this note:

“I’m finally in a place where I’m ready to stop running away and start facing grief with an open heart.”

I hope you’ll take a few minutes to honor her vulnerability, courage, and generosity of spirit with your time and attention.

Her questions and my answers can be found here-

http://inpursuitofhappiness.net/blog/2014/01/17/what-happiness-looks-like-purvi-shah-and-kids-art/

My other blog

It's 2014, I'm getting to hear about all the 12 year old b'day celebrations that Amaey would have been part off.
People say that time will heal, but they do not know what they are saying. Nothing can fill the hole. You somehow just learn to live life with that hole.

Does loss have a timetable? because each hour and each day and each month and then each year does bring new fears and hopes.

The first year
Each hour and each day is a memory of your loss
You breathe and realize that they are not breathing
You eat and realize that they would have loved it
You listen to, or see something familiar and you start seeing them there
You are alone in a crowd
You feel overcrowded sitting by yourself, with your thoughts
Each first of anything is hard
You won't know what made you suddenly cry hysterically
As days become months, you start thinking about what you did last year when they were with you, on that month
As you reach the first anniversary, life seems to suck out of you because you suddenly realize you can't turn the clock back

As you start your journey to the 2nd year
Everyone around you has moved on in their lives
Your family is trying to start each day without it becoming a huge burden
You are able to listen to that song, and cry and smile at the same time
You are allowing yourself to open up
You find yourself saying, I'm fine at this moment, don't know how I will be maybe after this conversation
As the 2nd year progresses, each moment is not a shock but more of a lump in your heart
Your loss goes inwards
It almost feels like you are dying slowly from the inside
But on the outside, you are learning to blend in with the world

In the 3rd year, you finally realize that you were living with a flight or fight response
You were working hard to keep yourself busy, all the time
You closed many doors and reached out for new ones
You are suddenly acknowledging that you were hiding, from yourself
You might be ready to come out of hiding and search for the truth
You might seek answers to the why's
You might allow yourself some slack, and slow down, and stop running

I'm still only 3 months into my 3rd year, I don't really know what the 3rd anniversary mark will mean to me and my family.
I do know that I'm making an effort to allow myself to be grateful. I could not hear that word before. I did not know what and why I should be grateful.
But now, I'm allowing myself to think about why I should be grateful. I can hear me breathe beneath all the tugging in my heart.

I have decided to start contributing to my other blog, http://desishmata.blogspot.com/, instead of contributing here.

I realize that, NOW, I look at the world differently.
I feel, touch, smell, laugh, and hurt differently.
Now my memories of Amaey are intertwined into every experience so what I have to say is not just about Amaey or his loss or my life without him, but it is about learning to live life, see life, feel life, with the hole that will never fill.

Blessed

I just re read my last post and I can see why I received so many concerned emails from friends and loved ones.
Yes I did start Kids & Art again and I cannot be more thankful. The mom who had called me did come with her son at our October workshop and I was so happy to see her son. He was this shy boy, all he wanted was to do his art. He did not utter a single word... He spoke through his art and that said a lot.

Do I get sad when I'm at a workshop? Yes I won't lie, but do I get sad when I'm driving and suddenly hear a talk on science? Do I get sad, when I close my eyes to take in the warm steam of my tea because when my eyes are closed I see Amaey's glasses fogging up? Do I get sad in my happiest moments? I will have to say yes to all of that. Does that mean I stop doing all of that?

I feel very rewarded for continuing Kids & Art. I feel rewarded because I have some amazing people who have reached out to me to volunteer to keep the organization going. I feel rewarded when families tell me that they haven't seen their child so happy in a long time. I feel rewarded when children get to start and finish their art and feel proud of their accomplishment. I know that with the treatment they have to leave a lot of things unfinished... Creating a masterpiece that they can look at and say 'I did that'.... That is totally amazing.

I just feel grateful that I have so many people watching out for me.

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.