Saturday, June 28, 2014

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.

Sunday, March 23, 2014

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:
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

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. 

Monday, January 20, 2014

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-

Wednesday, January 08, 2014

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,, 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.