Broken Sweetness

Caring for someone you love when they are ill is like sustaining a hundred impacts a day. Something going wrong. A night of pain. Their fear. It is your honour- and your only plan- to absorb those blows, so your broken sweetness doesn’t have to.

Caitlin Moran, Times Magazine, 23rd July 2016

Apologetically I’m being asked if I’m okay, how I’m doing? I say apologetically as I know it seems a futile question. But those little reaches, the fingers of trying to understand, are so warmly received. Apologetically I can only muster a futile response. Turn it into a status report of RD that day. 

But this is how it is. It’s raw. It’s everyday. It’s mundane.

With every good day RD gives us, I smile with him, love with him, try to remain in that moment. But a voice tells me that I am failing him. That he is fighting but I have handed over that fight.

With every good day I worry that I’m doing enough to make these days count. Is there enough for him to experience a lifetime in these weeks? His cognitive disabilities mean his demands are refined and relatively easy, but I wonder whether he wants for more but cannot ask for it.

With every signal of change in RD I wonder where the balance will tip and falter. Whether we’ll enter a phase of more bad days than good. He’s currently not tolerating his feeds, and screaming in pain until we have reduced them to half. We’ve have spent his lifetime tinkering with his calories and his gastric wibbles, building him back from periods of intolerance for six years. But now there’s no going back. So entering a phase of calorie counting and measuring feels mundane and everyday for us, and yet the future phases aren’t.

He’s sleeping more. He’s a shade of Churlish Green (Farrow and Ball TM) but without a hint of churlishness. He’s losing weight and muscle mass. But because of that he loves to be held. So I take him in my arms and try to memorise the weight, joints and smell of him before it becomes a memory.

And DD. She watches wide eyed and silently. She makes heroic efforts to gain attention, which essentially involves being a massive d*ck. But she asks me if I’m okay when she hears my voice crackle with tears even when she can’t see I’m crying. She ever so quietly slips away and returns with her favourite toy for RD to cuddle in response to his agonising cries. 

I find myself wanting to retreat from others and yet also desperate to keep them close. I want to write about this and yet don’t want to be a car crash for a good rubberneck. I want to go and get inappropriately shitfaced. I want to wake up and none of this to be true. I want to run up a hill and punch a fucking cloud.

I want to worry less that others are struggling to deal with this. Because I’m not dealing with this. I’m in a stilted reality, aware that my very universe is going to fall out of my arse. And I’ll just be stood there shaking and sh*tting and crying. I’ve just had years of keeping a lid on my fears over RD’s mortality. He felt like he came on loan. And no, not from heaven. Or God. But to show me what is true and pure in life. So for now I don’t cry much, but soon I know I won’t not cry much.

So how am I? I look the same from the outside. Got a nice new jumper. Wearing lipstick. Maybe going for the odd run. Still whispering FFS under my breath what feels endlessly at DD. Taking a billion photos and videos of RD on my phone. If you saw the facade, I probably look like a cut out and keep mid thirties mum. But my insides feel like jelly that’s been shook up and gone into that pile of bits.

Bit of a roller coaster then…


6 thoughts on “Broken Sweetness

  1. We only know each other very slightly but I wanted to to say your whole family is in my thoughts at what must be a nightmarish time for you all. RD is a lovely, brave, resilient, funny young man and I always look forward to seeing your posts and stories about him and his sister. You’re rightly very, very proud and it shines through all of your writing and beautiful pictures. Its so easy to ‘haunt’ blogs and not comment for fear of overstepping the bounds of privacy, or typical british reticence, or whatever. However, I wanted to say, clumsily and knowing it can never cover the enormity of what you have been through this year and are continuing to go through, that I’m thinking of you and you’re not alone.

  2. Just stumbled across your blog. Wow! Beautifully written words, that speak in so many ways to what I am feeling and going through right now too. Not many people in this situation can say “I know how you feel” but I honestly believe I can. It was unreal reading your posts and the many similarities in our current situation. My son Ben is older than RD at 11 (but with LD’s), currently on PD, but for how much longer?? Whilst renal numbers are pretty good (apart from the HB which darbo can no longer hold, and albumin – which you’ll know even more about than me having lived with CNS), many other things, (caused by his mitochondrial disorder) are Failing us. We are in bed 100% of the time Now, slowing down day by day, syringe driver in situ, hospice on hand, and utterly heartbroken. 💔 😂I felt like I had to make contact, and that at some point we may be able to offer each other a kind of support that few others can. If you’re interested My email is – anytime if you feel like it, no probs if not . All the very best x

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