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.

Gone Boy

It’s like a metallic tang of blood in my mouth, and yet none is there.

It’s as if someone has dug a hole in my sternum, and I clutch at my chest trying to stuff my tshirt in there.

It’s as though my eyes could burn through a wall, the sky, the window as I realise they haven’t blinked, just streamed.

It’s sometimes like it hasn’t happened, and I feel I have to force myself to remember seeing you still and colourless, in the most peaceful of dreams.

Sometimes I just don’t feel anything, and I wonder if that’s normal. Or when the pain will come again. Or a fear that it will knock me down and I might not get up again.

I feel like I could vomit up my heart, but don’t want to, as yours is now in there too.

I think of all my babies. You, my first. Your sister, who I want to hold close but struggle with the energy to parent. The ones that we never knew outside of hospital.

I wait for you to come back from school, from respite, wherever you are that isn’t here. Even though I know.

I’m trying not to question, not to let the guilt in. To know that you loved life right until the last few days, and that this summer has been the most glorious gift but I keep feeling this resolve falter. Because I’d do anything to have you back.

I soak in the love for you, for us, from others. But I also wish for the peace of just you and I again. Pulling my hair, grabbing fistfuls so I would kiss you again. Pulling my hand to your head to rub your moleskin hair.

It’s so, so quiet now we’re back home. No noisy toys buzzing and singing, no chuft chuft of the wheels of your scoot. No flicking of the drawer handles or banging of doors with your feet.

Your room feels still, stagnant. Your bed still smells a little of wee, and yet I lie in it and breathe it in. 

I lie there and remember the last time you were in this house, screaming. And I’d had to give your more and more midazolam until I carefully carried your floppy body onto the ambulance gurney. Still hopeful that we’d sort this, right it. Whispering for you to stop crying as my tears wouldn’t stop.

The day starts and I feel like I can’t. The nightmares that are too real roll into the day.

But you know me RD. You know there’s still lipstick and laughter that punctuate the day. The memories hurt because I just want more. 

And even though I will want to jump in and swap places on the day we have to celebrate your life, I know that it will be right and fitting for you. When you’re settled on that place on the hill, with the breeze in your hair that you loved so much.

For RD

I am nameless.

I’m not a widow. Nor an orphan.

I feel not of this decade, Victorian maybe?  More children dead than alive.

I would make a cracking X Factor back story. Dermot’s voice would go low and serious, the piano would start. Shot of my profile looking anguished.

Shame I can’t sing.

I am a car crash on the side of the road. People slowing down to pass and wonder “how will she survive this?”

I am, as DD quietly told her play therapist, very old, very happy but sometimes sad.

My son shall never become nameless. His physical form may have failed him, but his sweet, pure, lion heart lives on in all of us.

He has endured sixty, not six, years worth of medical intervention.

He made me a mother. He gave me that name. That love that has no edges.

That never fully severed umbilical cord.

He taught me a lifetime of lessons. Of patience, and hope. He taught me to truly open my eyes to the beauty of difference. To lose the fear of imperfection and embrace it.

Unconditional love in the face of multiple conditions.

He told me he loved me without words. Showed us he would get there without walking.

Because of RD I know my heart is a crystal water balloon, fit to burst or break.

Because of him I shall always have a name. Not the mummy, mum or, no doubt, MOTHER!!! you may hear from DD.

I will forever be mumumumumum.

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.

Find Your Tribe

Before you, I assumed This Wouldn’t Happen To Me.

Before you, I assumed that if it did, I would be prepared. I would know what to expect when I was expecting.

Before you, I assumed I wouldn’t cope.

After you, I assumed that we were one blood test away from closure. One blood test that would make the connection.

After you, I assumed we’d never find our place. I searched and searched, I denied and denied.

After you, I assumed my life would be full of more worries than happiness.

 “When you assume, you make an ass out of you and me”

 

But here you are, my little blonde pixie.

Rufus-49.jpg

Here’s what I know;

You haven’t caught up. You have no recognisable words. You have legs like twiglets that don’t support you well.

That one blood test took 4 years of many many tests, and it has taught us nothing more than we had already learned so far.

That one box is never enough on any form. Nor is the answer to “what’s his diagnosis?”. Or less politely “what’s wrong with him?”. That’s unlikely to get a favourable response.

More of you doesn’t work than does.

Here’s what I’ve learned;

The true definition of quality of life. You try with your whole. When you love, you love with all of you.

You have enriched us all. Not just us as a family of four, but wider family and friends.

That every goal you achieve, no matter the scale, is enough. You are enough.

That you are a pure soul with the heart of an early 90s raver: there are never enough flashing lights or tunes.

That some days are harder than I could have ever have assumed. But not because of you, but because I have to hold you down when you’re scared. I have to let people prick and poke at you. I have to quietly shush in your ear so that I don’t cry. When I see people look at you and not see what I’ve learned.

That I have a fight in me I never knew was there. How to truly advocate for another.

That sometimes there are more questions than answers. That life doesn’t always get worse even when the chips are down.

That we are not alone. We weren’t alone when Undiagnosed. We are still as supported in a community now we have some answers as we were when we had so few.

We found our tribe. Unconnected by symptoms and level of ability. Connected by a feeling of otherness, of feeling and finding our way through the unknown.

SWAN UK is more than a support group, they have a Big Ambition:

  • They want to ensure every one of the 6000 families that have a child born with a Syndrome Without a Name every year, have the support they need, when they need it.
  • They want recognition that being Undiagnosed is not always a temporary stage.
  • They want every child and young person with a Syndrome Without a Name to receive high quality coordinated care and support both in hospital and at home, regardless of diagnosis.

That Big Ambition needs financial support. As our fourth annual Undiagnosed Children’s Day approaches, please help us support it by donating any amount to:

https://www.justgiving.com/swanuk/

Text: SWAN11 (amount) to 70070

 

And if you are a family needing that support:

 

info@undiagnosed.org.uk

undiagnosed.org.uk

undiagnosed.org.uk/blog

020 7704 3141

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.