We Could Be Heroes?

This is something I’ve wanted to write about, but will admit to being scared. I’m not scared about expressing my opinions or my words, but because of the exposure to the hungry beast that is social and traditional media. Sitting, ready to pounce with vitriol. Opinions begets opinions. I have watched from the sidelines as more people have said “I can’t imagine what the parents are going through” or starting comment with “if it were me.”

Well, I can imagine. And I know what we decided in our unique case. That’s the crux here: conjecture is based on evidence presented and comparisons to other unique cases. Yet no two incidents are the same: there may be similarities in conditions or questions over treatment, but ultimately we humans are individuals and this is so prurient in the case of rare disease.

So why write this? This post is in solidarity. In having experience, so I write this to post into the ether with the hope it may bring some comfort.

When RD was tiny, when he just wouldn’t grow, wouldn’t tolerate feeds, and every step forward was met with one back, I fought to find hope. Strength. Optimism. It was clear that he was in pain: for all sub 3 pounds of him he could silence beeping machines and alarms with scream after scream. He would vomit across the room. 

I was petrified. My first born son was alien to any other baby I’d met. But every fibre of my being, every synapse of my body tingled with love for him. I willed him to improve, in spite of mounting evidence of poor prognosis. Yet, I was also scared for him to live if the pain would continue. 

The evening of Boxing Day 2010, we arrived on the neonatal unit. I scooped RD up from his incubator, he let out an ear piercing scream and covered me in vomit. The sobs heaved from within me. We were living a life I could have never imagined, I didn’t want it anymore. I couldn’t grip onto the traces of hope and optimism. So I asked RD to show me. Show me he could do this. I whispered into his tiny neck, show me.

For reasons beyond my understanding, he did show me. It wasn’t down to different medical intervention. In a month he’d tolerated feeds and put on weight. The treatment for his kidneys seemed to have worked unlike any other case they’d seen and therefore one prognosis- that he would need albumin infusions multiple times a week- proved incorrect. The doctors were wrong.

RD left the neonatal unit for home after four months. Again, we had been told that this was unlikely. In that time, in the endless stretches of minutes sat at his incubator and then cot side, I had run every emotion. I had crested peaks of elation at improvement, battled despair when it felt like things were unable to get worse, felt gratitude beyond compare and the last one, anger. Such anger, at how unfair this all was for RD. For us. And every time someone got it wrong, I channelled that latent, useless anger at them. Doctors, nurses, professionals. 

I couldn’t always see that they were just other humans, trying to put together their best evidence and experience and forge a way forward. Hospitals are fraught, noisy and busy. You feel as though you are the only case that should matter, blocking out the hundreds of insular crises happening around you. That’s the only way to get through. To survive as the bystanders to the one battling for their life.

In his five, nearly six years, we had with RD he fought against medical prognosis but our fears about lifelong disabilities became actualised. I had many conversations where I had to reel off all the list of things RD he could do, that he loved, so evident was it all the things he couldn’t. In that time we truly came to understand what quality of life looked like. RD’s label of life limited never left him though. In spite of appearances, his condition was deteriorating.

When we tried renal replacement therapy, and it consistently failed, it took me right back to the start of his life. Constant hospitalisations, where he was utterly miserable. At first I fought off any suggestions that the kindest thing may not be to continue. Anything else felt too awful to contemplate. 

When we really looked at the picture in front of us though, I tried to think how RD was understanding this, being that his understanding was different to ours. We had come to learn that whilst RD could clearly react to discomfort and pain, or complete happiness, he couldn’t anticipate either. He reacted to what he was presented with at that very moment in time.

After another fraught night in a side room with RD, where he couldn’t be calmed from the pain he didn’t understand, I asked him again. But this time I realised he’d already shown me. The one thing I know though is it wasn’t giving up on him, it wasn’t letting go.

For us, RD’s lifetime was too short. I would still give everything to have him back, but only if I knew he would be happy. Truly happy, as he was when we stopped invasive treatment. I will live everyday missing him.

But for RD his lifetime was just as long as it lasted, and he left us with the balance of happiness versus discomfort swinging heavily towards happiness. He knew he was loved unconditionally. His short years were full for him.

I don’t know what I’d do in any other instance. I do know how it feels to fight, and I also know how it feels to gracefully step down. Both feel just as heroic.

AGM

We’re in it now. A year since RD started dialysis. I have been for a few weeks.

I’m not sure why, but so far since he died I have only really been living in memories that fall within that year. I peek back further, but they’ve sort of mashed themselves into a pre one year ago burger. His birth tumbled into neonatal squashed into coming home, pressed between the years of raising two tiny humans and finally finding stability until it All Changed.

You could say it changed when we lost Tiny. Her little alien form never getting past halfway. Or then the sibling that has no doubt been washed to sea, with the fairground goldfish. But because they remained fairly abstract they were rudely quashed by watching RD battle and lose his life. At some point I think my bungee will allow me to delve back further, but for now, I live in my memories of a year ago. It shunts along with me every day.

The last few weeks have really stalled. DD has hit peak tiredness at end of term, combined with an inability to express her fears as to exactly why Mummy looks like she’s smuggling a bistro set under her clothes. She doesn’t want to feel him kick anymore. She’s stopped talking about her baby, Daisy. The last conversation she told me her baby would be tiny and need a wheelchair. Yep. I may have lingered slightly too long with my head stuck in the fridge before turning round to look at her.


So one day lasts for what feels like two. I find myself snapping and shouting at her more than I want. She responds in kind. Wolf is really, really enjoying his marathon training.

It feels like I’m getting to a destination where suddenly all I’ve held in for a year will be released somehow. But my heart is so scared of that, and keeps reminding me at inopportune times, that this baby could die too. And I’ll still be on hold, waiting for release.

I have lived a year where I held in my fears and pushed and forged ahead to get RD towards transplant. A year where I pushed and forged to give him the best of everything whilst simultaneously quieting a fear that he could die suddenly.

I have lived through being told he would have weeks of left of life but believing that actually, maybe deep down somewhere they were wrong and willing him to live, just a little longer.

I didn’t get a chance to surface before carrying this life. And somewhere, on that day, it changed on a switchblade and despite gathering evidence that all will be well with this baby, I carry the weight of the fear that he will die.

Both are just beliefs. My head knows the circumstantial evidence is telling me these beliefs are wrong, but my battered and bruised heart is bracing itself for a fall.

Just because you feel it,

Doesn’t mean it’s there.

Radiohead, There There


RD, one year ago.

The Bags are Packed but The Shelves are Full

A pair of shoes for the day. Maybe two- closed toe and sandals. A dressy shoe in case you get to go out somewhere nice in the evening.

A capsule wardrobe carefully put together with a key colour and some accessories that can dress something up or down.

Matching undies and maybe a nice nightie. It is holiday after all.

Certainly not: 3 cardigans, spot cream, knickers you last wore whilst doing burpees in a muddy field and no pyjamas. 

But then my bag was packed by a flustered husband who was trying his best. Who had last seen his son unresponsive as an antibiotic anaphylaxis bloomed across his porcelain white skin. After carrying his 3 year old daughter on his shoulders to find the car I’d abandoned. I had had to call 999 from the side of the road. I’d dialled as I’d  watched RD seize in my rear view mirror.

But that was a few weeks ago now. On the weekend that was British Summer Time. At 10.22pm I watched as RD was put to sleep in my arms, his septic dialysis line apparently almost fell out in theatre. It should do, it had only been there for 5 weeks.

There had been some signals of an undercurrent of a burgeoning conversation.

In A & E, as I held the oxygen close to RD’s face whilst keeping up the toddler conversation with DD as she ate “her favourite sandwich ever” on the floor in resus, there was a brief snippet.

“The line has to come out”

“Okay, and then what?”

“Well, then maybe nothing”

I’m guessing that I didn’t respond with a ‘smeyes’. Sorry Tyra.

“Oh no, I mean we see how he does whilst we clear the sepsis”.

And then, a few days later, in a stuffy hospital cubicle. We discussed how serious the episode had been, and how it could have been a lot worse.

So yet again, what next?

Well, perhaps nothing. 

Nothing. The end. Making him comfortable. Weighing up the risks and benefits. 

I was firm that no, this was not the end. The line had not been placed well, it was always at risk. We had to try again. Dialysis had been transformative. I was already burdening the guilt of the infection. I could take on more if I was wrong. 

I am a mother. Wolf is a father. ‘What is best for us as a family’ is that our children have the best opportunity to feel loved and thrive. Both of us would lie on the metaphorical train tracks to save our children if needed. But we are not foolish. Or naive. Our eyes are wide open to the bumpy road that awaits us. Well, perhaps a little foolishly hopeful. Because if not, then what?

You put that conversation on a shelf in your brain is what. And continue.

After 2 weeks of intravenous antibiotics, RD wasn’t coping without dialysis. The line was going back in. We decolonised him- human sheep dip. We prepped a pain relief plan post surgery given he’d struggled so much the time before, we spent time with the surgeon discussing what line and best placement.

All went well. We felt vindicated. RD came home full of beans after another cycle.

24 hours later he looked a little pale. And hot; Over 38 degrees. Which when you have a central access line is immediate hospital admission.

Here again. This time I’ve spent the morning not showering in case I miss ward rounds. I’ve lounged in my pyjamas with the mist of grossness that can only be achieved from sleeping on a waterproof mattress. So, what next?

I get ushered along the corridor in my pyjamas, a hospital Walk Of Shame. To a small room with shit sofas and school toilet roll tissues. Been there, done that. No good comes from these rooms with their walls that could talk of broken hearts and dreams. But in a jolly shade of bile yellow.

Next. Next is:

a) this is a random virus. Treat it and the allergic reaction to the antibiotics. Continue on dialysis.

b) the lab grows cultures that we can blast with antibiotics, we hope.

c) the lab grows a bug that can only go with removing the line. But then what? Then nothing. That’s the end of the line and the end of the line. No more access. 

So how long with him then?

We don’t know.

Days? Weeks? Months? 

Weeks. 

Fuck.

We have 24 hours to wait. 24 endless hours. I grip tightly to case a.

Monday morning, negative cultures. The line is safe. I feel like I could fly and vomit at the same time. A clever friend of mine tells me to put it on the shelf in my brain. All this talk of mortality. But my shelf is full. Over stuffed. 

When RD is well, I would very nearly hoik out my kidney with a butter knife myself and give it to him. When I watch him suffer, scared and unable to understand any coping mechanisms, I worry. I worry about making the right decisions. I can only lurch from event to event, hoping that I’m doing the right thing by him at each turn. We are his voice, but sometimes I can’t understand him.

The best tonic I had this weekend was from my 5 year old niece. Bright and interested, she asked pertinent questions about her poorly cousin. In a gloriously fresh view on life and death she helped tidy the shelves.

I’m going to embrace my inner five year old: question things simply and succinctly. Stop making assumptions. And see the possibilities in everything. Including my 5 year old son with the strength of an ox but as fragile as eggshell.


And if you are on holiday, and not having to wrangle with Ryanair over a refund, please please soak up every glorious second. But you can fuck off with your tan.

The Spaces Between

I’ve been known to sneak a peek at the last page of the book midway through reading it. To decide on my pudding just after I’ve chosen a starter. Not necessarily to skip to an end as such but just to have a little view as to how A might get to B.

We know now that RD is not fairing so well. His kidneymoon is over and I’m not even sure they’re on speaking terms. We know transplant is imminent, and yet in the time it took for a coin to flip, now not so imminent as he needs a period of dialysis to improve the homeostasis of all his blood levels. And here is where we are looked at square in the eye and asked what we want to do. Haematological or peritoneal? Live or deceased donor? 

What do we want to do?

Run. Stop time. Anything but decide.

I want to know how it will be. How it will go. Show me my boy in a year. Please show me my boy in a year. I can’t bear to think of the alternative and yet it chews at my bones daily at the moment.

I didn’t know, until I saw her almost slip on a staircase, that my knees could feel love.

Eva Wiseman, Observer Magazine, 06 March 2016.

The anxiety I feel at the moment feels like bruised fingernails. A dull, pointless, ache. A sickness like the first sleepover as a child. Homesick. That home is the safe space we once inhabited when RD was stable. And it feels a long way away.

It’s this space between we exist in right now. Somewhere between a desire to live and to grieve. Trying to open up to the possibility that all is completely outwith our control, and yet still tasked with the monumental grownupedness of ‘what we want to do’. 

I can only apologise if some functioning fails me right now. Hour to hour I veer between the energy to go for a run, clean the house and do some gardening to suddenly then stripped of the ability to even respond to a simple text message.

I keep holding RD close, as close as he will allow for as long as he will allow. Trying to transmit my urge for him to be okay down my arms and into my hands and into his boney yet swollen body. And, it’s probably his dwindling energy reserves, but I feel him give into that for longer. Stilling for that brief second longer before trying to scrabble around to escape or pressing my mouth to make me sing. A space within a space that makes things that bit more bearable. 

  

3 – .6 = 2.4?

They say things happen in threes. I’m not sure why. I’m fairly sure when things go tits up I stop being able to count. Because clusterf*cks generally contain a billion issues going awry. Maybe if I took the time I’d realise that the minutiae break down to a multiple of three. I think it’s supposed to give you hope that if three shit things happen in a row that that’s you done. Just don’t cut your nails on a Sunday, or put new shoes on the table again.

But really there were three things. Three things that as I sat there on Mothering Sunday I tried to hold back the rising cold of sadness. Two babies gone, and one child’s health now showing signs of rapid decline. Those three things were the lynch pins. The crashed car, the missed train, the diverted flight just another trio of the week. A late school taxi, an officious security man on baggage check and the spillage of shower gel over the contents of said baggage another. Spirals within spirals.

I think only Pete Tong could understand just how bad it all got. Well if he then got the lurgy. Because I’m now also in my sick bed. I’m sure I could also group that with another two things but I’ve got major brain fog. 

Sat in the hospital playroom on Sunday awaiting yet another set of blood tests for RD I thought back to before I was a mother. The naivety. Not just that this job would be hard and relentless. I mean, I could guess at that. Or how many people would call me Mum even though I’m pretty sure I didn’t grow medical professionals in my womb. But just how left of centre it could go. I wanted, I still in lots of ways, want three children. And I’ve created four, we’ve created four. 2 + 2. And now one is in danger. 

We’ve known from 8 weeks that RD’s kidneys would go at some point. But as goalposts moved, and we were graced with far longer than anyone anticipated, you can’t help but wonder if actually it was true. And we’ve been lucky that whilst the extent of his disabilities unfurled, his kidney function was relatively static. But that luck has meant this has left us breathless. Trying to firefight his sky high urea. Filling in forms that ask me how much I drink a week. Knowing that from now on either the phone could ring with the news that a kidney is ready. Or in six months we’ll know whether one of mine is a good enough match.

I remember though that we are at this point because we have fought, and will continue to fight for RD. In the face of suggestions of palliative dialysis. Of firefighting until his time was up. Questions as to what makes up a quality of life. Living, that’s what. And that makes me proud to be the mother I am. A grafter and a fighter. A painter on of a lipstick smile.

  

Big Fat Shiz of the Year

Given that it’s been a remiss year in the writing stakes, and that all New Year Eves since 2010 have been less about a sweaty queue at a bar and more about lying around like melted cheese on the sofa, I thought I’d try and use that time more constructively.

Plus I did one of those Big Nine 2015 things, and I almost didn’t recognise the year it showed. Probably because a big part of this year has been parcelled up and put on the shelf for me. Coping mechanism or passport to a Michael Douglas Falling Down moment at some point, only time will tell. If I could build a house of shit or sugar, I always choose sweet for there’s always far more to be grateful for.


Original Best Nine. See what the focus was… And where’s RD?


My Best Nine. Likes Schmikes.

We moved back to God’s Own Country. Well, back for me, but unchartered for the other Ds. New home, new school, new nursery. New hospital. A house to strip and change, make our own. A perverse amount of time spent in DIY stores- no cable ties or rope bought FYI.

I did that there bit of running. That was nice.

We settled in, found our feet. Took a holiday. Started the summer surrounded by the comfort of family.

Wolf started his PhD. I am often asked what it’s about, but the thing is, it’s like when you’re watching University Challenge. You know, it’s not that you don’t know the answers (unless it’s popular music or artists I’m screwed), or even that the question confuses you, it’s that bit where you’re not even sure what the words in the question mean or what they’re doing in a sentence together. In the past I must have convinced Wolf I was several echelons more intelligent than I am. Or maybe used the word echelons casually. So let’s just say it’s about architecture and leave it there.

But I’m proud, he’s given so much of his life over to be the main carer for RD so I can work. He even had an Elsa sticker stuck to his bottom yesterday without complaint. He’s a good egg.

Then we had the month of birthdays. A 5 year old, a 3 year old and a 20 week old. We celebrated and recovered. Slowed time down and got the balance back. Each day lasted an age and yet in the blink of an eye it was a memory.

I wrote about RD this year. Without intention, DD was left out. But she fills every day with such moments of sheer joy all whilst being a bit of an arsehole. I could regale you with minute by minute depictions of this. I’ll leave you with a taste.

“No No No NOOOO!!! I do it MYSELF”. Wrestles with activity. “I can’t DO IT” [briefly heartbroken] “Mummy, need a cuddle. Mummy, can I feel your boobies?”

My skin inked, I found closure and returned to life as before.

Christmas whistled around the corner and here we are. I saw Christmas through the wide eyed wonder of a three year old. We fulfilled the dreams of a five year old who may have zero interest in Christmas itself, but a foot spa with a big switch made his year. If happiness was the goal, Father Christmas brought it.

So time to look ahead. A year that has been life changing but not life defining leaves us with hope ahead. There isn’t a reason for Tiny not continuing with us medically, it was just one of those things. And, trumpet blowing warning, we’re pretty good at dealing with those things.

18 months ago it was only probably a year until RD would need a change in management of his kidney degeneration. So, 6 months over and still, the process is in gradual change. We ignore the goalposts and just continue to watch the game.


Wabi-Sabi

Wabi-sabi (?) represents a comprehensive Japaneseworld view or aesthetic centered on the acceptance of transience and imperfection.

WIKIPEDIA 2015

Nothing lasts, nothing is finished and nothing is perfect

Robert Powell

I’m not particularly mindful. I’m a million miles from Zen most of the time, bolstered by a Mum on the Run diet of cheap snacks and caffeine.

And apologies if this is a bastardisation of the said Japanese philosophy. But as I oil the rusty cogs of trying to articulate my brain fug, I’ve had this phrase floating around I there, occasionally bumping off the sides. It seems to accurately sum up a space we’ve been existing in. A space where, thankfully for quite some time, has had its own odd stability. That from the outside may seem wonky, frantic and necessitating a penchant for gin but has actually been relatively calm, happy and glacial.

So, all that running eh? Who’d have thought it, that the girl who’s own knees could take each other out (a genetic trait that my daughter has acquired), that was in the final few at any race at school and that scoffed at runners, could actually find it such a tonic. So much that I finished the Virgin London Marathon in April in tears, happy tears, as the experience had been so fully transformative. That I also cried two thirds of the way through knowing it was going to end and despite the pain and endurance, I didn’t want it to. Crying as I completed a childhood dream, remembering being stood by the Cutty Sark as a 4 year old watching my own mother pass by, and hoping one day I could be a real life super hero like that: Foil blanket non negotiable (Yes, crying featured strongly). I wasn’t a perfect runner. I was mostly a soppy mess. But I’d done something that had previously seemed like a pipe dream, and I knew that wherever I have been the last few years took me there.

And I may have sung “The Wind Beneath my Wings” (in my head I hope) and imagined my family. Because I’m still actually not cool.

RD has been stable. Really stable. We know underneath it all that his blood work doesn’t show such stability, but from the outside he has flourished. Pink in his cheeks and meat on his bones, he has made big strides from the baby that was a curled up little dormouse. We’ve all come to understand that he sits firmly in the severe to profound end of disability. But the nice thing is, once you let that in, and embrace it, his only yardstick is himself, and what he achieves. His physical feats, his developing curiosity, his calm and sweet nature are all his. And yes, I can’t sugar coat it, he has had periods, and is still prone to periods of self harm. And getting his poo in places. But he is my impish, beautiful boy, who is about to turn 5; a milestone in itself.

  m35vvot

And DD. If RD is an Imp, she is my full on pixie. Full of mirth, joy and deliciousness. And toddler tantrums. And tiny hands that goose me. She continues to bring the umami to us all. She loves Eetabix, princess dresses and football. Just on the cusp of 3, our big little girl whose understanding of the things around her brings perspective. Occasionally this is painful; her reading of Pirate Pete’s Potty had her as like Pirate Pete (Score! I thought) but then RD as the baby. But mostly, she lightens or distracts most serious moments. Climbing on the doctor’s knee for a cuddle as he talks through transplant options, or flouncing into the hospice in full Snow White regalia complete with Frozen pink vomit wellies.

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We’ve moved house. And area. In fact, we’ve become adults and actually own property. Years of frustrated Pinteresting have exploded over every room. We’ve stripped and painted, taken out walls for better accessibility. I love it like another child…

But onto that… New house. New baby.

I have to cycle back a bit. Somewhere in all those changes and moves, I got a phonecall that I honestly never expected. Over the last year we’d spent some time discussing and never really concluding whether we had finished our baby days. I think we were settling on that we’d been lucky now. That the risks felt too much for DD primarily. We could give her an equal playmate. On the other hand potentially living the knife edge of losing two siblings or being responsible for double life long care.

So when our lovely geneticist called me in December I assumed it was just a check in. RD had been stable since all the metabolic and mitochondrial testing days so the balance of routes to look into had shifted. When they’d asked for consent for more bloods in the preceeding months for some new testing, we agreed to it as we had so many others. Just in case but never expecting. A long wait over Christmas until we could fully catch up, but what they had come across was all we could hope for as a wider family whilst simultaneously as useful as a chocolate teapot when describing RD.

In his early days as a neonate, after many a sleepless night spent on Google, I asked his consultant whether RD could possibly have Russell Silver Syndrome and Congenital Nephrotic Syndrome together. Oh, how that was dismissed as impossible. Unheard of. Not that I like to have the last laugh, but Ha. Essentially that’s what RD has. He has a MUPD (Maternal Uni Parental Duplication) of Chromosome 6. That is known to be one of the causes of Russell Silver Syndrome. He has a gene change within that that is known in duplicate causes kidney and brain abnormalities in mice. So far unseen in anyone else.

The upshot being that a maternal duplication of a chromosome is incredibly rare. So, so rare that we were told it’s rate of reoccurrence was negligible. And DD was not a carrier. After I moved on from some misplaced guilt that I somehow caused this, that can of worms could be reopened. Back to the marathon. I actually suspected I was pregnant just before I ran it. Thankfully although somewhat uncomfortably that proved not to be the case. I’m not sure we were ready at that point. But as we had a weekend to ourselves it meant we could discuss it with clarity. We agreed in all Bristishness that it was time to start thinking about it again. Very decisive there.

2 months and a week later, I showed Wolf a positive test. His reaction was that it was ‘only 60% accurate’. Glad he’s not in advertising for ClearBlue. Being a very proactive pair, we were still thinking about trying. The power of thought right there.

Nothing is finished, and nothing is perfect.

So here I am, back at my keyboard. Oversharing. Starting another circle of life, with less lion lifting (I am completely unaffected by the Disney marathons of my daughter as you can see).

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