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Big Jobs & Smaller Jobs

October 30, 2018

It’s funny talking about death. When I wrote my death plan two years ago nobody wanted to talk about it. Friends would cut me off mid sentence and change the subject to something more palatable like the career of Harold Melvin & the Bluenotes. But one week on from being told I’ve got urachal cancer and everyone wants to talk about it. When I went to pick up my Tuesday doughnut earlier I half expected the manageress at the bakers to ask me how I was getting on with my lasting power of attorney.

I don’t mind. There are things that need discussing. Especially whether Harold Melvin & the Bluenotes’ version of Don’t Leave Me This Way is better than The Communards’ version. The support workers’ thoughts have been focused on a future without me around. This as a category covers a lot of ground. From what crisps to put in the cupboard for Steven’s Thursday afternoon snack to what provisions need to be in place to stop Hillingdon dragging Steven from his home whilst the bolts are being screwed into my coffin.

Steven has two categories of jobs – Big Jobs and Little Jobs. A big job covers putting his clothes into the washing machine whilst his bath is running. A little job might be putting a Twix wrapper in the bin. I’ve taken a leaf out of his book and divided my tasks into Big and Little jobs. I knocked a little job off this morning and presented the support workers with a schedule of the daily crisps. In case you’re ever tested on this the Thursday crisp is a packet of steak McCoys.

Because a large part of Steven’s life has been spent making preperations for the future which by and large I’ve accomplished, there’s really only one Big Job still to do. I’ve got to make it to my 60th birthday next March. In responding to the support workers’ concerns about Steven being kidnapped, I’ve drawn up a contact list for them of every barrister, lawyer and advocate I’ve met over the last eight years. It’s a long list but I’m reasonably confident that enough of them will spring into action if the worse happens. On my 60th birthday I receive my substantial works pension – enough to cover the costs of a liberty preserving legal action. My last job. But probably a necessary one.

One thing that keeps me going is the knowledge that Steven’s got his priorities sorted. If faced with the choice between engaging a Doughty Street barrister for himself or going to the shop to buy his Saturday Quavers, I know which task he’d classify as the Big Job.

And he’d describe himself as “massive happy” if he was allowed to sit on his sofa munching his Quavers whilst having a Harold Melvin music session.

 

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One Comment
  1. swanarchie07 permalink

    I am doing some catching up on reading your blogs as lots been going on with my lad , siezure sucks. Any way I thought I would just send love your way, this must be so tough and scary for you , and it’s saddens me to think of you dying , I don’t no ins and outs but if there isn’t any treatment for it and this is your reality I want you to no , every blog post you do has always inspired me to be the parent you are to Steven I am to my son thank you . Much love

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