How long more would you grieve?

Classic question.

Its like asking "When you think you'd die?"

As long as it takes, my friend!

Haven't you heard before - it's not about the destination. It's the journey!

No, I can never answer that question and this is something one should never ask a mum who is in bereavement. Don't even say "It's been a year. Don't you think it is time to move on? To let go?".

There are some things in life that you cannot get over. This is one of them. Grieving for a loss of a child.

Grief, they say is one of the most traumatic experiences in life, and everyone would have to get to experience it one day. It is also the most difficult psychological symptom to treat. It binds you. The pain gets you to your guts. It reaches every nerve so you feel it! It takes you to places that you've never known existed to the point that even doing the most mundane, basic things seem difficult.

But I know that somedays, you'll find a place to leave it aside and carry on. Somedays it hit you and you find yourself weeping, crying non-stop. Lasting for 1 minute, 1 hour, 1 day, 1 week!

So leave me alone in my space of grief where time do not exist. If you love me, if you care for me.

Please do not ask how long?
Ask, "How has it been for you?"
And when I respond, be in the place of compassion, of giving.
This way I know you are on the journey with me..

My Guardian Angel

Going with the flow with MUMs means to me - share it with all the people that I know, ask them to route the blog to their own friends - to open up channels and whatever pathway it opens, just go on it.

It is very like the way a product would be promoted with a predefined target group. But before the brand is rolled out, we need to have plans - how to market it. I do not have such plans for MUMs even though I have ideas. With this in mind, I made my way to Cheras to meet Dr. Ednin, Chief Operating Officer of Hospis. I remember calling him 2 days ago about my support group, to update him on what I was doing, how I was moving on and in the hope that he could somehow helped promoting it through his patients. He mentioned that it would compliment something that they have just set up and that I may be of some help.

The drive to Hospis can be described as a trip that I both enjoy and not enjoy. Enjoy because I get to meet the people at Hospis as they've been a great relief during my journey, and not enjoy it because it is located at the fringes of the famous Cheras cemetry, where the remains of my dad is.

As usual, I said, 'Jon, you with me?".
"Ya mum" shot back the answer in that familiar voice. That was all I needed.

Apart from the birds singing, the place was quiet. I looked around the lobby area and realised that a meeting was in session in an enclosed room. I made my way to the toilet, and passing by a stairway, I saw tucked in corner the familiar blue tartan wheel chair. Without a doubt, I knew it Jon's which we donated after he 'left'. "Thank you Jon for being here with me".

Fifteen minutes later, I was led to a meeting room by Dr. Sylvia and she confirmed that indeed the chair was from us. Soon Dr. Ednin joined us and the sharing started. They were curious. They wanted to find out how and why I started MUMs. There were a lot of questions asked. They were concerned about me dwelling in the past.

"Wouldn't it be like opening up fresh wounds all over again?"
Wounds are already there no matter what you do. There is no such thing as opening or closing of wounds. They are just there. Not talking about it is in denial. Talking and sharing is healing for me.

And the classic, "How long do you think you'll grief?"
As long as it takes. I may not even get over it but I'll get through it.

There were more questions, and midway Prof. Yip of UMMSC joined us, who suggested I should write a book. And I said the plan is there and it even has a working title.

After about an hour or so of sharing from both sides, Hospis offered to adopt, to watch over MUMs to monitor our progress. They even requested permission to log on to my blog and to route it through their network of friends and associates.

MUMs is getting somewhere..

And to support us as individuals (Peter, my mums and me) moving on, we were offered seats at the International Conference on Survivorship and Supportive Care in Cancer, particularly the workshop 'Support in Bereavement'. This is scheduled to happen on 10th August, a day after Jon's 1st Year Cross-Over event.

"How about the session on 'Setting up Support Groups'". I asked. Yes, why not.

I was then invited to share on "Bereavement - Guiding Relatives in Mourning" during the "Establishing Psycho-Oncology in Malaysia" conference on the 8th of August - a day before Jon's!

Now there is no such thing as coincidence. I thnk the above 2 conferences happened in a way that has opened up a whole new path for me to take a trip on. It is like an invitation. A road of opportunities for me as well as for MUMs. So many possibilities.

I believe this is the first step to 'going with the flow'.

I prayed to God for his gifts and learnings for the day. I thanked him for taking care of Jon while I am 'away and till I come back'. Like I always do.

Finally...The Logo

After having gone through the symbol, then the colour.
Pink? Too obvious.
Blue. Light Blue. Yes.
Healing. Water. Clarity. 3rd Eye. Intuition. Sixth Sense. Knowing.

There you have it, the visual identity that holds true to everything what MUMs stands for..
..the heart shape that represents love
..the flower that symbolises undying love..
..flowers dangling in an arching stem for mums uniting mums together in oneness..

This is the best part. I reread the printed-out 'wikepedia', and for the first really, really read it.
Bleeding Heart is found in Japan, 'Dicentra Spectablilis'. California to British Columbia.
Imagine, the vision. Connecting mums all over the world!
I am excited about the possibilities - connecting mums all over the world!
We are not alone, we don't have to be!

Then I need a line to explain who we are, what we do for mums. So many censors, so many suggestions. Finally it came down to : "Mums uniting Mums. Together in the journey of Healing. An initiative supporting mums in bereavement".

I also some simple ground rules to focus how we behave, how we offer emotional support, 'the coming from' :
•Even as we are going through similar pain, we are each individuals differentiated by belief systems, esp. about how we cope, respecting each other's space of bereavement.
•That we listen, we share, we do and will not impose.
•That no matter how much pain we are going through right now, with faith we will eventually come to a place of peace.

Ai Mee said, "Not too many rules please!". I hope this is not too many because I believe it is important for us to be grounded by what we stand for, for others.

God bless.

Bleeding Heart - A symbol of Undying Love

Bleeding Heart can be :
•A term, usually critcal and politically loaded, for someone who is held to be overly sympathetic to another person's (or group of people's) plight
•Someone who is emotionally concerned about a person, idea, or event but still refuses to act
•A common name of plant of the genue Dicentra, which have heart-shaped flowers

Just words, MUMs? No too cold.
Words with symbol? Better.
What symbol?
Butterfly? Beautiful. Liberation. Also can but it's meaning more to the child who has liberated..This is about the mums who are left behind...
Dragonfly? For strength, hope. Can but..anymore?
Hearts? Love. Yeah but what else?
Hands. OneNess. Linking. Aiyah, too common.
Women forming a circle. Uhh...
Flower. Yeah I like it! Its softer, feminine.
What type of flower?
Rose. Aiyah for lovers la!

We went through all these with numerous visuals and discussions, and after much thought I decided Bleeding Heart.

Ai Mee's Journey with Erica

Thank you for making me the 1st official member of your team!! What an honor. Sorry for the late reply, I have been away to Endau Rompin. Although I have been there countless times, from both the Pahang side as well as from the Johore side, each visit is different. The camp I visited last weekend is new to me and it is absolutely beautiful. Erica would have loved this place as much, if not more, than the camp she was at when she was 6.

It is hard not to think about Erica especially when we are in camp. If she were there, I know for sure she would have asked to be taken for a night walk everynite. She would have remained in the river for as long as she can and would not admit that she is cold even though her teeth are chattering. And she will want to go exploring along the river and the surrounding jungle. She would have found insects which I would have miss. She would be very happy playing with the seven dogs
which went along with us. And she will be laughing, how I miss her giggles and her laughter.

When Erica laughs, you will want to laugh along with her, her laughter is very infectious. Leeches do not bother her. In 2001, when she was 4 years old I took her to Endau Rompin for the 1st time. She was very disappointed when she did not get any leech bite and was very envious of the guy who got about 8 to 10 8 leech bites during the hike. If you don't like leeches then if is better not to walk with Erica because she will not allow you to kill it.

Soon it will be 1 year since Erica left us or to borrow your term ; 'Crossed over'. It is hard not to cry when I think about her. While I am glad she no longer have to go through all the pain it does not stop me from missing her and wishing that I can hold her, smell her and hear her laugh again. She is such a bright spark and it is very hard to accept the fact that I will never get to see her or hear from her ever again....well at least until I 'cross over' myself.

June 26, 2006 - that was the day the Doctor told us that Erica has leukemia. The next day he confirmed that she has Leukemia type AML and on Wednesday, Erica started 10 days of chemotherapy. There was no time to think or to consider alternative treatment. Her blood count was so low that they have to give her blood transfusion very early on Tuesday morning. There was no remission after the 10 days of treatment and she has to start on her 2nd course of Chemo almost immediately.

August 10, 2006 - that was when Erica followed the angels and moved on.
All over in just 46 days. The only thing which keep me 'sane' now
is the fact that Erica is no longer in pain and does not have to go through all the needles
and chemotherapy ever again.. Her spirit is free and I know she is happy wherever she is.

So many memories, so much love and so much tears. So much more to share but
cannot continue now.... so will have to wait till another day.

Welcome Ai Mee!

Months after Jon, I desperately needed someone to talk to, someone who is going through the same pain, who could understand me. I was also looking for an escape route from friends and family who cannot stop saying things that I don't want to hear. I only heard of Ai Mee then from our mutual friend Jenny who described her as strong. And "I wonder if she would speak to me?". "Please find out if she would", I asked Jenny. A few hours after, I had my first of many conversations with Ai Mee..

The conversation started jerkily because I was nervous because I have asked to arrange this. After a short, very, very short intro, the sharing started immediately. It was like no time wasted, it seems like a mutual need was mutually met. Yes, you could say we were soul-mates bonded by so many factors.

That Erica, her only child crossed-over on the 10th morning, a few hours after Jon did. That she was so willing to share, so wanting to reach out. We were simply there for each other sharing our tears, laughs, sms-es, phone calls. There were no "you shouldn't do this, you shouldn't do that". We just knew what to do. Finally we met end November, 2006, and now she is my first mum member. This is her story...

More on MUMs

When I first thought of MUMs, it was meant to appeal two groups of mothers – mums who, like me, were in bereavement, and those who are living and caring for teens with cancer. After deeper thought, I decided that maybe the latter group would not be as open to the idea of such a support group because their child is still alive. Why would they want to see me or be part of the group? Especially in Malaysia, where such things are rife with taboos…

Today, I’m seeing things differently. I believe that these two groups can be integrated into one seamless body. After all, the primary target is mums, and the primary mission, to unite mums in a journey of hope and healing. And they don’t have to go on it alone. I figure, whether the child is still alive or not, that the point of the group is to support the mothers.

And there’s so much that can be done.

First off, mums in bereavement would have a loving space to share their pain, and know that they are not, and need not, be alone in their journey. Also, we could run or participate in workshops for bereavement management, acquiring skills to help us cope.

Mums who are living and caring for their terminally ill children can be supported by giving them time off to take little breaks for naps or a quick dash out to get stuff. We could even run short courses on how to care for our loved ones, both physically and mentally, in order to enjoy a better quality of life.

We could do camps for teens with cancer to meet with other such teens, allowing them to integrate with others who are going through the same journey. They could foster sharing, and bonding that is maybe rarely found in other groups. So they also know that they are not and need be alone in this.

We could encourage volunteerism amongst healthy teens to be with these special teens so that they may experience the values of giving and unconditional love, and the blessings of a healthy life. And we can create events, held outdoors in a park or open space, to make this happen.

I would also like to create a foundation which will be in the memory of my son, the JonGan Gift Legacy. The foundation is like a ‘Wish List’ from teens with cancer requesting for things to make their fragile lives more enjoyable. For example iPod Nano, latest Harry Porter book, toys, party, etc. We will not raise any monies to grant them their wishes rather we will route the list to invite charitable individuals or corporations to donate them. We will create a form for each request like biodata of the teen, supported with full address and contact numbers, and bits of information like hobbies, interests, etc. Each request will be authenticated by me or my representatives. I will also do this within the Klang Valley only to see how far I could go.

As this is a personal service, I am committed to make big or small requests happen. I believe God is on my side, and he will pave the way for this to happen.

I want to take small steps and even with small steps, I need help.

To raise awareness in the hope that mums would be open or ready to join me in forming a group, to help run this support group. Mums in beareavement. And mums who are living and caring for teens with cancer.

Only with enough mums from either groups could we implement steps that are empowering to both mums and teens living with cancer.

This would be my first task – to get mums to join me.

If you are a mum in this situation, or know someone who is, remember there is a place where you can come for support and encouragement, even as every day seems dire and empty.