A Moving Target for Reality

Real time, this week. The calendar’s been warning us of the triple play of Obstetrician, Child Development Team meeting and renal clinic with the possibility of the biopsy result. Even more real time, I have to leave this post as someone has just pooed in the bath, don’t think its wolf?! The carnage has been flushed down the plughole, we’ve stopped laughing, back to work.

Back to the above triptych, you’d think it would have been evident which one I should have been worried about. But due to Rufus’s determination to piss on the chips, shit in the bath of baffle the medical community, the biopsy came way down the list. The obstetrician was a chat about more compression stockings, the biopsy would be clear. Because that’s how Rufus rolls- you want to look for that? You won’t find it in this vessel. Tuesday was different though, this CDT meeting, because I was going to have to take off the boxing gloves and accept defeat, Rufus’s development is a worry. A worry beyond my first time mother anxieties and the middle of the night teeth grinding. Time to get everyone together and discuss his failings. But I’ll never allow anyone to let ‘thrive’ be associated with ‘failure’ again, so they better watch out.

That’s the thing, in my head before hand I’m ready to address my worries. I’ll bring them up first, have them out in the open. Tell them to worry about his development. Join me, these are all the things he can’t do. Meetings with his consultants I worry about how we’ll discuss them. And then I get in there and defend him to the hilt, forget to bring stuff up, just  so I can blinker myself from the actual truths. Because he’s my boy and he’s perfect. I’ll just worry about that on my own thank you.

But this would be different, they were going to discuss it first, we were party to a meeting. A meeting they wouldn’t run unless a child has ‘complex needs.’ I barely ate that day, agonising over who might drop a clanger and declare Rufus disabled. Because I only collect DLA because of his gastrostomy feeding, right?! And we only see so many specialists because he was premature, right?! Let’s be doing no labelling here, let’s just side swipe reality a little.

As it was, I was disarmed by seeing all the lovely female specialists involved in Rufus’s care together, it was like a good old get together. Some met me once, some had seen me white lipped and emotional, laughed with me, listened to me. And here we were, where’s the plate of biscuits and tea? Wolf was running late due to a roundabout conundrum, so let’s have a good old natter. Rufus was at the childminder, the shield in my weaponry was down. I was going to have to be honest, they could be honest. Hope Wolf takes a little longer, prolong the bloodshed.

And when it started there was no aversion to reality. We learned a little more about just how they were concerned about his feed intolerance and inability to grow. That were never entirely sure anything going in other than IV fluids would work. No wonder he doesn’t eat, his reflux was so severe, and still bothers him. Were you aware how severe? Not really. But Mum does all this and that to help with sensitivity, so Speech and Language took a back seat. We don’t see him that frequently, but the changes when we do are amazing. Did you realise that? No. It really is unusual that he hasn’t required that much hospitalisation, who’d have thunk it from such a start in life?

It went along those lines, positive. Some real supportive words about Wolf and I, about our family. Watch it, I’m pregnant, don’t be too nice, that’ll bring on the waterworks. Reality was friendly. Nobody denied he was complex, he has some hurdles to overcome, but everyone seemed to genuinely want that for him. They liked him, us. Don’t laugh it away, toot your own trumpet.

We walked away inflated, relieved, hungry. Wolf back on his bike, I think I may have happily hummed and smiled on the way back to the car. The meeting had been at a special needs pre school. I started out the car park, but had to quickly reverse as an ambulance arrived blue lights flashing. Reality, ouch. Count your bloody blessings, go home and cuddle and kiss the boy until he can take no more. Enough worry, just be.

The Obstetrician appointment by the way, had followed it’s expectations. Scan, tick. Let me try and find you some more compression stockings. Bit of a waste of time.

That brings us to today, the renal clinic. We still see the consultant responsible for that weekend. We’ve become accustomed to his idiosyncrasies, come to like him, like the way he is with Rufus. Laugh afterwards about his inability to form a complete sentence in a reasonable amount of time. And now I don’t narrow my eyes, and enter the room with a ‘see, you were so wrong’ attitude, he’s relaxed. He’s probably come to realise that my ability to converse in medical speak is not from an actual knowledge of what I’m talking about, just a can do attitude and sense of one-upmanship. He doesn’t call me out on my bullshit, and I respect him for it.

On the way to the hospital today Rufus was on a charm offensive, and in the waiting area he played happily and laughed at the other children whilst ah ah ahing to attract their attention. He was cool, we were cool. But he knows that when he goes through those doors, has a strip search to discover whether he’s still thriving, there’s only going to be a lot of prodding culminating with blood being let. Cue tantrum as we entered the consultant’s office. Super.

Just tell us there’s no new news, increase this medicine, chat with the dietician, stick him with a needle and we’ll all go for coffee and cake to decompress. We’d rushed to get there, leaving the house toothbrush in mouth, god knows I need my one coffee permitted a day. The biopsy, yell, did show some damage, yell. Sit the monster on the floor with a toy. No respite. Put him in the pushchair with a toy facing the mirror, slight moment of calm. Shit, I’ll have to listen now. There’s scarring on his kidneys, and fibrous build up. It will be degenerative. Dr was shocked by the results too, we’d all been lulled into a false sense of security by Rufus’s ability to cope with this disease. Transplant was a maybe not a definite, but here it is. No timeline to speak of, we think its a lot of years away which makes everything a lot easier, but it will be in his childhood.

The target for reality had stopped moving and settled on a spot between the top of my stomach and my heart. We’d been allowed to believe, then his kidneys chuck us a curveball. There are incredible parents of children with this illness that have to deal with the odds we were first given and have to see their children on an unbelievably painful and traumatic path, in and out of hospital, infection after infection, management of a central line. They are, as said before, incredible, and supportive. And I’ve often felt guilty being part of the gang. But at some stage Rufus won’t keep getting better health wise. I’ll join the gang fully, knowing that the only ‘cure’ is transplant, and it will be a beacon of hope because he’ll need it.

It’s given definition to not seeing the wood for the trees. Or not seeing the meteor hurtling towards the earth because there’s a loud party dancing around Rufus’s development. And let’s not mention the mini D growing, let’s just assume that’ll be ok, ok? Get my gloves back on, I won’t hear anything else this week.

Let’s look at Rufus’s worry free face, he couldn’t give a monkeys about what he can’t do or what his kidneys will inevitably do. He’ll just give a shit in the bath.

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