Saturday, February 28, 2015


One of the first lessons I learned on this journey of a 'special needs parent' was that I was not alone. It was an invaluable lesson. The other came from my children - both of them, but especially Miss Hannah - life's too short to hold back because you're scared/embarrassed/shy. 

So yesterday I watched anxiously while a virtual real life mum of 4 with stage 4 liver cancer risked her all for the chance to live cancer free with her 4 beautiful daughters (the youngest of whom has DS - hence our initial connection) and her fella. It didn't work. They found new tumours in the scant section she was hoping she'd be able to survive with.

Today she's dusting herself off. Putting on her red lippy and preparing for a too finite future.

Three days ago I went to the funeral of a guy I went to school with. By the by he was born with significant physical disabilities - and you know about three weeks ago when P and I were marvelling at this modern inclusion gig and trying to recall the scant exposure to disability that wed had in our schooling - this guy, an old and good friend, who Ps been friends with since he was 10 - this guy didn't even get a guernsey. And we both wondered why he hadn't commented on the last few fb posts [P is playing his eclectic and quite extensive vinyl collection from Z - A].... And when he didn't arrive at work the previous Friday - his work mates were concerned - and so he had passed away - and we were reminded that yes indeed he had significant disabilities and that these were no doubt behind his early death at 46.

The night before the funeral, Ps brother - the one with stage 4 brain cancer - had a seizure. He's still in hospital now and we are all very concerned for him. We want to be there for him, to support his gorgeous fiancé - the scans aren't good - the old tumour continues to grow and new ones emerge... There is a wedding planned for 3 weeks time - well all be interstate then but now - it's not good. A conference with his drs on Monday might tell us more but in the meantime P is poised ready to fly to Melbourne in an instant. It seems such a cliche 'cancer sux' when I see it on someone's fb wall, or 'kick cancers butt' - what good is such vitriol when you are facing death?

The funeral was beautiful - Chris lived full of passion, lots of passions - but the one I relate to most was music. I loved reading his comments on Ps vinyl fb posts - even Billy Joel! His enthusiasm for creative beauty. His funeral was packed to the rafters with people from various stages of his life. It began with some Rolling Stones, had plenty of divine gospel hymns in the middle and concluded with the Warumpis  - an awesome aboriginal band. Sublime.
We caught up with school friends we hadn't seen in 30 years and others were lucky enough to still see regularly. 

Through the wonders of our small world and via fb Chris realised that he and I had two mutual friends who wed met through very different circumstances - we were all there to mark his passing, to celebrate his life and make our inadequate offerings of support to his family.

The spirit of these three very different individuals is what triumphs in the end. For they are full of passion, love, compassion and life. Oh yes life in the face of death. Cancer doesn't steal that, death can't defeat it. I don't know what happens when we die but I imagine it being a bigger, more intense version of the firey abyss P and I went through with the twins birth, Hannah's diagnosis, her heart surgery and post operative complications and Kit having meningitis - the darkest time of my life when my hope was depleted and my faith gone. Even in the face of all this and more these people stand tall. Their spirits guide those they love. I don't believe they ever stop.

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