Friday, September 27, 2013

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.

Tuesday, September 24, 2013

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.

Monday, September 23, 2013

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.

Wednesday, September 18, 2013

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.