WORK IN PROGRESS - 31 10 12

A lot of me is a white, middle-class, privileged arse. Petrified of pain. It must be fun if I am to stay here, I said to my Self and my suffering parents from early on. I AM HERE!

I relatively enjoyed my privilege to master a life of owned large flat in London, big studio, great work, those i could tolerate. I thought I'd push out three kids, do the marriage thing and get back to My Life, tick the boxes, why not? I imagined our greatest drudgery would be rowing about where to spend our second holiday a year. Sigh. 

Then Axel. No third kid. Dead marriage. No career.

Axel meant I found myself sitting opposite a woman at a parents-of-disabled-children support group. She explained the air pipe from her child's nose to the oxygen tank in her huge handbag. He would be dead within the year. My emotional skin scorched. She was interrupted to decide which cake and which coffee. I struggled to recommend the coffee cake. These events stained the whole of my world. I seemed less robust than them.

What I gratefully know is that no amount of privilege can protect me from the sad things. All our endings involve death. No mirror ball needed for that one. That if I learn to swim in all this with grace and acceptance, then I am truly free. More so, if I can be a part of and embrace all the external sadnesses with some gift and serenity I am internally content also. I am free. I am in balance. 

Mentally I get it. My molecules vomit. 

And I pause to post this, still not 'right', a work in progress. 

It's what i've got so far.

I look forward to a happier ending... though I don't think it'll be as I expect. Not about my choice but my ability to accept, to glide with what is. 

Elisabeth Kubler Ross defined the five stages of grief... 

http://patients.about.com/od/researchtreatmentoptions/ss/Coping-With-Grief-From-Difficult-Diagnoses-To-Medical-Errors-And-Mistakes_3.htm

I want to achieve the sixth stage... A sixth stage of grief is perhaps the most liberating stage, and occurs for those people who begin to take their experiences and create something positive for others from them. It's called "proactive survivorship." It was not identified by Kubler-Ross, but may be the most healing of all stages of grief.

I know there are many parent/carers who will struggle with me saying Autism can be a sad thing... it may not be but for my sons Autism to be such that I can not live with him aged 9... is a sad thing for me. That his wrists are splitting with his biting...

Call me selfish, I am.

I no longer think of myself as some kind of tug boat deciding where I'll travel on the River of Life but as a sail boat imagining I may bear some influence on where I am being taken. 

xxx