So, we’ve decided We think it’s best After looking at all the risks
There’s no way to write those texts. To make those calls. Dig deep into the energy reserves to speak of the unthinkable.
It’s fair to say that 2016 has been one massive kick to the balls. Another baby loss. Then David Bowie. And frigging Victoria Wood, I mean, come on man.
Whilst the majority of the nation voted to leave last week, our medical team were also coming to a controversial conclusion. But the resemblance in the situation ends there. What use is political posturing in the face of real, actual grief?
But before that conclusion, we had a glorious week on holiday. It wasn’t a cruise, but I can only describe the underlying reason for that last minute break felt like seasickness. There were little toes dipped in sand and sea, relaxing in the dappled sunlight through a forest canopy. A slow clock and our child’s desires first and foremost.
And then the weekend, where between my brilliant, generous friends and the charity Make a Dream, we treated RD and DD to their first Big Weekend. Parties galore. Watching RD enthralled by a live brass band, surrounded by his very own band of brothers renders me speechless and wordless.
That’s probably the best way I can put it. Awkward and unreal. Renal replacement therapy is failing. I won’t put all the reasoning here, but here are some facts:
RD will no longer be cannulated; pricked and bruised repeatedly for his battered veins only to reject it within a matter of hours. No more repeat repeat repeat blood tests. No more hospitalisations.
For the next howeverlongitmightbe our goal is to spend each day as it comes but with the minimum intrusion and discomfort. Just full of love and everything he loves.
RD isn’t unconscious. Far from it, in spite of his blood toxicity he rallies and giggles as he has always done. The increasing itch and muscle fatigue just peeking out in between.
He’s not covered in wires. There are no machines to stop. He is surrounded purely by as many cuddles as he will tolerate and desire.
We are fortunate to have this time. For all RD to know and remember is love. For DD to feel just as present in that. His life has been forged and etched by only him, and now this stage will too.
The pain is like I’ve swallowed a burning hot drawing pin that never cools. I’ve had to discuss things no parent should. I have had to imagine handing an ambulance driver a form that says ‘Do Not Resuscitate’ because I know I’m likely to scream, or quietly beg repeatedly to save him.
I have a bag of medicines that remain sealed until The Time.
Grief is on hold, cornered, ready to pounce. Now is about the here and now.
(Photo credit Rebecca Lupton. Laughter credit DD and her knickers)