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.

A week to last a lifetime. Which now it will need to.

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)


13 thoughts on “Hello?

  1. Always in my thoughts, now more than ever, sending lots of love, hoping that many, many more happy memories are made in what ever time you have left xxxx

  2. Love is all there really is and you all have it in absolute spades, but I know you already had that one worked out. May you have as much love and joy in your time together as humanly possible. What else is there to say… my heart hurts for you, we love you all to bits and I think you’re the bravest person I know, but I wish you didn’t have to be. All our love as always from us all xxxx

  3. The pain I feel for you all is immense, no parent should be where you are, but yet you are so so amazing. RD could want for no one better. Love happiness and memories it’s all Bout the now and we are all here for you when you need us. So so much love sent to you all xxxx

  4. Seen your story today and it’s very moving we have a child born with one kidney and it was madness going through scans etc thank the Lord that she is well and is now 5 years old.May you know God’s blessings in these days weeks ahead and gave strength for each day to enjoy every precious moment you have as a family God bless.

  5. What amazing courage and Grace you all have. I feel so sad for your situation but can see you are grasping all the joy you can. Amazing family. 🤗

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