Quiet Storms

Sometimes crises aren’t loud or newsworthy.

They’re quiet and insidious. An intake of breath, an apology.

My heart pounding in my ears louder than the VTech Toot Toot toy that RD presses over and over. Louder than his peels of laughter at the power of his fingers on a button.

A simple lifting of a vest. A snake of redness etching up from a dialysis line. 

It’s only been two weeks since those conversations. Three weeks since this new line has been fitted. Everyone in the room knows this is not good. I feel the hot burn of vomit in my throat. Try to shush the panic, remember, no assumptions, question, question.

We sit and wait. There will be no dialysis today. We will not be going home today. RD is oblivious, on glorious form. No temperature, no signs of illness. No dramatic ambulance ride. I’m not sure how to phone wolf and tell him; only four days away from hand in at the end of his first year of his PhD. Three days away from Father’s Day his son’s life is being quietly threatened.

I channel my five year old self and phone my parents first, test out sharing the news. Quell the panic until we know what this really means. The surgeon arrives, confirms that the only way to fix this is to take out the line. Slight crumple, deep breath. But offers a little hope: RD does have another vessel if we wish to try again. 

It feels like a life vest made from barbed wire for now, given that RD has had two dialysis lines placed in ten weeks, eight weeks of dialysis, two serious infections and one undiagnosed virus with serious anaphylaxis. That’s not good odds. 

I just know I’m getting taken to the room with the bile yellow walls and the box of thin, inadequate tissues. I phone wolf, hear his breath leave him. “He’s got another line infection” enough to transfer the jolt of pain through him.

The last few days are too raw still. Too many conversations to unpick. The option of fight or flight has hit wolf and I differently. We look at each other wanting to come together across this gulf.

I can see that the recommendation of the doctors may not be too pessimistic. That we are hitting too many hurdles. Putting him through the pain of dialysis: the insertion of another line, the management of it when actually it is a law unto itself in RD’s body, awaiting what feels like the inevitable infection- how is that in his best interest? Yes dialysis itself has transformed his health and he’s so brightened and alive on it, but the means to dialyse are not working.

And then, what if no infection, or it lasts long enough to get to transplant: the intense immunosuppressant therapy required. He’s now classed as severely allergic to two antibiotics and one antihistamine. He has a history of gut shutdown, a known side effect to these drugs, and if we’ve taken that vessel for dialysis we have lost access for intravenous feeding.

I have screamed in pain in RD’s bed imagining him no longer being with us, but I wrangle with what his needs are. Do we decide to fight and let go when there is no choice, or do we know we’re on a path to no choice that is filled with risk and pain and wonder whether it’s worth walking down? RD only knows what is happening to him in the moment. In spite of his cognitive disabilities I have fought for him, but now because of his cognitive disabilities I wonder who I’m fighting for: more time for us or him.

Non miracles aren’t newsworthy. 

Wolf wants to try again. It’s in his gut. And I love him for it. It’s an impossible fight to have between us because there are no winners.

For now we’re going away on holiday next week. We’re having photographs taken. A charity is organising a party for Rufus with a live orchestra for our own little maestro. A chance for us all to love and celebrate him. The hospice has been engaged for more than respite.

And then we will meet again with the medical team around us, to try and find a way to navigate this. Push or pull. This unchartered territory has been invigorating but now it feels impossible.

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22 thoughts on “Quiet Storms

  1. Just came across your post. Firstly what a beautiful little boy Rufus is. Such a sweet smile. You must be very proud of all he’s come through.
    You write very poignantly of your struggles, your love for each other and your little boy shines through everything you say. Hold onto that. I hope you’re able to keep Rufus close for as long as is possible. Xx

  2. Although we don’t know each other, your profound love for your little boy is overwhelmingly clear. What a wonderfully well written piece, full of love and emotion. You are your family are in my thoughts.

  3. A painful mix of emotions, beautifully unpicked and shared. It’s an unimaginable situation for anyone to be in, much love to you and your gorgeous family xxx

  4. Where would we be without words to express and unpick our hearts and thoughts, especially when on a journey as complex as this. Time away just being you as you are sounds a perfect way to regroup, I hope you are able to enjoy yourselves even for a brief while. Much love thinking of you all x

  5. I don’t know you but I’m sitting here crying with you, for you… You are both strong that’s clear to see and between you you’ll both make the right decisions, there are no wrong ones. Much love and hope xxx

  6. You are one of the feistiest and most loving people I’ve been fortunate enough to meet and I know everything you have done and will continue to do for Rufus stems from that. Hope you’re having the best time all together and enjoying being in the moment with your beautiful family. Keep heart, we’re all willing you on. xxx

  7. I am sorry to read about Rufus’ poor health and the impossible choices this leaves you to make. I have no words of wisdom, in spite of having lost a child myself two years ago. Fight for as long as you have the strength and you feel Rufus can take the procedures. But don’t forget to rejoice in the now, in the middle of the battle field.
    I hope the impossible will turn into possible and you will get to have your boy with you for many years yet. Hugs.

  8. I hope you don’t mind me commenting as I know we don’t know each other however reading your beautifully written piece about your adorable Rufus just filled my heart with emotion and admiration for you and your beautiful family. The love and strength you show will without doubt surround and strengthen your family. Sending love and hugs xx

  9. Words would be inadiquate to express the sorrow I feel for your family, Rufus looks like a real darling.
    Hold your family close and draw strength from wherever it comes to keep you all moving together . I hope and pray that even a small distant light draws you to the end of the dark tunnel and that you emerge even stronger to fight the next battle for Rufus xx

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