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? ย 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.

Into My Arms

I press my face against yours, trying to take a mould of your dainty bone structure. Your elfin features. 

I breathe you in, let your mole like hair tickle my nostrils, just as I did when you were first handed to me weighing not much more than a couple of bags of sugar.

I trace your minute freckles, wondering if they make a constellation. Tracing my fingers across your still baby soft skin.

I look at the profile of your thick, bovine eyelashes. The way they curl upwards, point to the sky, tall and proud.

Part of your essence left you on Tuesday. The last day I heard a noisy, plastic toy being brought right up to your eyes and pressed repeatedly so you could absorb all your senses.

The day you cried and cried. Screamed. Couldn’t find peace. We weren’t prepared for pain, for anguish and confusion.

Even in the midnight ambulance to the hospice we hoped that with some more tinkering, some better pain relief, we’d see you wake up and have us for fools. Not just scream out.

DD has put toys in your bed, for when you wake up. Because whether three or thirty six, we still hope. Who of us knows more? Me, guided by facts: a syringe driver full of powerful sedatives, no fluids, listening for any changes in breath. Or DD, governed by instinct and a pure observation of what is in front of her.
We are grieving your mind: busy, clever, inquisitive. But we have a chance to observe you as a newborn now, watch your reflexes and impulses and soak in your body. 

The changes that would have set alarm bells ringing- puffy, mottled skin, a crackle as your secretions lay heavy, matter not now. We know where we’ve arrived. Now all we can do is let you know you’re surrounded by love and there’s no need to be scared.

You won’t fly to the heavens, you won’t gain wings. You’ll hopefully just find ultimate peace and live on forever in all of us.

I don’t believe in an interventionist God

But I know, darling, that you do

But if I did I would kneel down and ask Him

Not to intervene when it came to you

Not to touch a hair on your head

To leave you as you are

And if He felt He had to direct you

Then direct you into my arms

Into my arms, O Lord

Into my arms, O Lord

Into my arms, O Lord

Into my arms

And I don’t believe in the existence of angels

But looking at you I wonder if that’s true

But if I did I would summon them together

And ask them to watch over you

To each burn a candle for you

To make bright and clear your path

And to walk, like Christ, in grace and love

And guide you into my arms

Into my arms, O Lord

Into my arms, O Lord

Into my arms, O Lord

Into my arms

But I believe in love

And I know that you do too

And I believe in some kind of path

That we can walk down, me and you

So keep your candles burning

And make her journey bright and pure

That she will keep returning

Always and evermore

Nick Cave & the Bad Seeds, Into My Arms

Extended Pause

10 weeks. No dialysis. We’re not supposed to have made it this far. If you’d had plotted a graph with RD’s blood chemistry results as they had charted previously, the odds were stacked against him.

Our little underdog.


Not only is he still here, with us, he’s living. Of course there are changes, my eyes are open. Fluid balances being tinkered with and then tinkered again. For our sanity, I needed to know- is RD showing some kind of radioactive gunk, superhuman strength against blood toxicity that could fell a large horse or, actually has it somehow plateaued? We’d agreed no more invasive treatment, and that included blood tests, but here I was going back on my word.

And here’s why: this stasis is stifling. The worry that sits like a stone in my throat all day, everyday is heavy and exhausting. You know that worry as a parent all the time; a sickness bug, a temperature that lasts longer than you expect. How helpless it can make you feel. How you wonder when it will get better so life can continue as it was before. How you worry about too much or not enough medicine. 

It’s that but endless. Or actually there will be an end but you don’t want it. Or maybe you do want it, but you worry how that sounds. Those niggles that eventually all you’ll be left with is memories of this time and how annoyed you are that its filled with worry. But you can’t make the two mutually exclusive.

I’m worried that in this timeframe I’m not working, not providing. I’m worried that grief will rob me of my ability to function as I was before ever again.

I worry about worrying. About not worrying. About driving myself insane. About driving others insane.

So I needed to know. We needed to know.

And as ever RD has pushed the barriers of the understanding of his disease. His levels have plateaued or increased marginally. There quite possibly is some radioactive gunk afoot. The prediction now, akin to licking your finger and holding it in the air, is that RD will have several more weeks, even possibly months as he is.

Things we’d put as impossible: returning to school, going on another holiday, planning a 6th birthday party are returned to us. Returned with a caveat, but there nonetheless.

Here’s the big one: he’s not expected to die suddenly anymore. 

And whilst that’s smack your arse and kiss your grandma amazing, there’s also a terrifying worry about how he will deteriorate. I can only hope for what we’re seeing so far.

RD. 

The difficult stuff; he’s tolerating less and less feed. And less and less fluid. But it’s not because he’s vomiting lots. It’s affecting his blood pressure so our determinants are him going more floppy, tired, irritable and cold hands and feet. Hard to distinguish from his overall decline. Because he’s generally all of those things a bit more now anyway.

The good stuff; his zest to live and love is unaffected. He is gloriously naive to what is happening. (Well, apart from his erythropoietin injections and he’s made his feelings perfectly clear about those). He tries and tries to carry on, he’ll just take more cuddles and more naps. And we are happy to oblige, indulge and breathe him in.

First, for memories. Second, to try and absorb some of that radioactive gunk superhuman stuff so we can all keep going.


DD.

Well, she tried to cut off his head with a toy chainsaw.

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…

How to Exist

How to Exist: 

Get up, even though you’re not entirely sure if you’ve been asleep. Actually, you must have slept as those nightmares that leave you screaming and sweaty require sleep.

And then just be. Keep busy. Shut it down. Focus on the present.

I’m not hysterical. In fact it’s unfunny how unmoved I may currently appear.

But I’ve made myself a promise: I won’t force emotion. I will just go for a ride on whatever appears. And so far that is the cart with three wheels but painted beige: wonky and meh.

It appears that even though there is an inevitability to the decision we’ve come to, there is no predictability.

It could be sudden. Imagine that? I have. Finding him in his bed, the phonecall from school. Yes, school, because he loves it, and the veritable King like status he now holds means he gets all the things he loves. Then odd thoughts: out in the park, a cafe, in the car. Having to try and explain that no, no, don’t call an ambulance.

It could be slow. Imagine that? We have medicines for nausea, spasms, seizures, increased secretions.


So we wait and watch. Hold him tight but let him be free to enjoy every day as he wants.

But here’s what helps us exist, RD is unsurprisingly surprising everyone. Bar the increasing weariness and muscle fatigue, his itching is under control. He’s still engaging, giggling, pulling at my hair. I can see that he’s getting paler, his eyes puffier and darker, but his mind still races with the million impulses to find all the toys and press all the buttons.

Also, the kindness of others. Visits, messages, post. Thankyou.

Grief is stilted. Part of me still waits for this all to be A Mistake. The wrong NHS number, an inaccurate measurement of blood toxins. So I guess denial plays a strong hand too.

The cart is on a slow trundle to a cliff edge in the fog.

Hello?

So, we’ve decided

We think it’s best

After looking at all the risks

There’s no way to write those texts. To make those calls. Dig deep into the energy reserves to speak of the unthinkable.

It’s fair to say that 2016 has been one massive kick to the balls. Another baby loss. Then David Bowie. And frigging Victoria Wood, I mean, come on man. 

Whilst the majority of the nation voted to leave last week, our medical team were also coming to a controversial conclusion. But the resemblance in the situation ends there. What use is political posturing in the face of real, actual grief?

But before that conclusion, we had a glorious week on holiday. It wasn’t a cruise, but I can only describe the underlying reason for that last minute break felt like seasickness. There were little toes dipped in sand and sea, relaxing in the dappled sunlight through a forest canopy. A slow clock and our child’s desires first and foremost. 
And then the weekend, where between my brilliant, generous friends and the charity Make a Dream, we treated RD and DD to their first Big Weekend. Parties galore. Watching RD enthralled by a live brass band, surrounded by his very own band of brothers renders me speechless and wordless.


A week to last a lifetime. Which now it will need to.

That’s probably the best way I can put it. Awkward and unreal. Renal replacement therapy is failing. I won’t put all the reasoning here, but here are some facts:

RD will no longer be cannulated; pricked and bruised repeatedly for his battered veins only to reject it within a matter of hours. No more repeat repeat repeat blood tests. No more hospitalisations. 

For the next howeverlongitmightbe our goal is to spend each day as it comes but with the minimum intrusion and discomfort. Just full of love and everything he loves.

RD isn’t unconscious. Far from it, in spite of his blood toxicity he rallies and giggles as he has always done. The increasing itch and muscle fatigue just peeking out in between.

He’s not covered in wires. There are no machines to stop. He is surrounded purely by as many cuddles as he will tolerate and desire.

We are fortunate to have this time. For all RD to know and remember is love. For DD to feel just as present in that. His life has been forged and etched by only him, and now this stage will too. 

The pain is like I’ve swallowed a burning hot drawing pin that never cools. I’ve had to discuss things no parent should. I have had to imagine handing an ambulance driver a form that says ‘Do Not Resuscitate’ because I know I’m likely to scream, or quietly beg repeatedly to save him. 

I have a bag of medicines that remain sealed until The Time.

Grief is on hold, cornered, ready to pounce. Now is about the here and now.

(Photo credit Rebecca Lupton. Laughter credit DD and her knickers)