Extended Pause

10 weeks. No dialysis. We’re not supposed to have made it this far. If you’d had plotted a graph with RD’s blood chemistry results as they had charted previously, the odds were stacked against him.

Our little underdog.

Not only is he still here, with us, he’s living. Of course there are changes, my eyes are open. Fluid balances being tinkered with and then tinkered again. For our sanity, I needed to know- is RD showing some kind of radioactive gunk, superhuman strength against blood toxicity that could fell a large horse or, actually has it somehow plateaued? We’d agreed no more invasive treatment, and that included blood tests, but here I was going back on my word.

And here’s why: this stasis is stifling. The worry that sits like a stone in my throat all day, everyday is heavy and exhausting. You know that worry as a parent all the time; a sickness bug, a temperature that lasts longer than you expect. How helpless it can make you feel. How you wonder when it will get better so life can continue as it was before. How you worry about too much or not enough medicine. 

It’s that but endless. Or actually there will be an end but you don’t want it. Or maybe you do want it, but you worry how that sounds. Those niggles that eventually all you’ll be left with is memories of this time and how annoyed you are that its filled with worry. But you can’t make the two mutually exclusive.

I’m worried that in this timeframe I’m not working, not providing. I’m worried that grief will rob me of my ability to function as I was before ever again.

I worry about worrying. About not worrying. About driving myself insane. About driving others insane.

So I needed to know. We needed to know.

And as ever RD has pushed the barriers of the understanding of his disease. His levels have plateaued or increased marginally. There quite possibly is some radioactive gunk afoot. The prediction now, akin to licking your finger and holding it in the air, is that RD will have several more weeks, even possibly months as he is.

Things we’d put as impossible: returning to school, going on another holiday, planning a 6th birthday party are returned to us. Returned with a caveat, but there nonetheless.

Here’s the big one: he’s not expected to die suddenly anymore. 

And whilst that’s smack your arse and kiss your grandma amazing, there’s also a terrifying worry about how he will deteriorate. I can only hope for what we’re seeing so far.


The difficult stuff; he’s tolerating less and less feed. And less and less fluid. But it’s not because he’s vomiting lots. It’s affecting his blood pressure so our determinants are him going more floppy, tired, irritable and cold hands and feet. Hard to distinguish from his overall decline. Because he’s generally all of those things a bit more now anyway.

The good stuff; his zest to live and love is unaffected. He is gloriously naive to what is happening. (Well, apart from his erythropoietin injections and he’s made his feelings perfectly clear about those). He tries and tries to carry on, he’ll just take more cuddles and more naps. And we are happy to oblige, indulge and breathe him in.

First, for memories. Second, to try and absorb some of that radioactive gunk superhuman stuff so we can all keep going.


Well, she tried to cut off his head with a toy chainsaw.


3 thoughts on “Extended Pause

  1. YOU BLOODY ALL ROCK! – I know that really isn’t enough but it is how I feel, everyday i come on for my dose of the D’s, we have been friends for many years now online, cause of our super boys, I have so much love for you all, it is strange for some to understand I am sure but honestly there is a connection between us Mums.
    I wasn’t sure I could ask how he was doing, not knowing how I would feel in this situ, so I am thankful for this post.
    I wish I knew how to help you, but I don’t think there is anything anyone can do, apart from know I am here at the end of the keyboard/phone, you made me smile last year when I didn’t think he was coming home and I hope in some way we can do the same for you xx

  2. He’s totally amazing -must have inherited that one, amazing that things you thought would never happen are totally likely again. Am sure he’ll continue to surprise you my lovely, he’s such a dude. Wish I could change the future for you all but for now RD is at least changing what his immediate future was thought to be -and doing it all by himself -proving doctors wrong in true swan style xxx

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