Three Years

It’s not like in the films.

I didn’t fall to my knees screaming. Slide my back down a wall to the floor. Of all the things I remember feeling in my bewildered state, I remember the guilty feeling of relief.

That we had arrived at the destination that we had been trying to fathom for months. So untouchable and yet unavoidable. There was no doubt now, he wasn’t dying, or the hope that actually everyone was wrong and he was going to be okay. He was dead.

We no longer had to worry about his comfort and pain, try and second guess his symptoms. He was, as the saying goes, at peace.

So I’m not sure when I started crying. The nurses cleaned him and put him in fresh pyjamas. And there he still was, gone but not. Still so beautiful.

It’s not like in the films.

He didn’t stop breathing suddenly. He’d been sedated for a few days so we’d become accustomed to the soft, gentle breathing. Over the course of eight hours, he’d pause in his breaths. Skip a few. It sounded deeper, damper. And I’d hold my breath until another of his came. And I wished it over, the waiting.

It’s not like in the films.

There was no montage of the after. No skipping through time. Now it feels like there might have been, as my brain has stitched over the surreality of immediate afterwards.

It’s not like in the films.

I remember laughing in the evening after RD died- a joke with Wolf about something- and immediately wanting to snatch it back because it felt so wrong. We were also trying to make space for the fact we were pregnant. Death and life in one day. Perhaps that bit was like a film.

Today marks three years since RD died. In some kind of space time continuum which feels like it could have been 20 years or 20 minutes ago.

Even if I don’t know what day it is, my mind and body stop at the last bank holiday in August. It’s like wading through treacle. It feels like a pain tears can’t justify. It annoys me, and I can’t push it away. I can’t embrace it either. I just have to succumb to it. I used to feel a version of this all the time in the months after RD died. Now, when it comes, it’s much more acute. More painful but shorter.

Life has continued and brought a lot of joy after the pain. It has tested and strengthened our wedding vows.

So like in real life, and in the films, I return to gratitude. Somewhere, there is a happy ending. Or not an ending, but a happy pit stop. A chance to breathe and take in the views.

To RD, for everything, thankyou x

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Holiday Cheers

There’s a prolonged time after a significant death where you wonder whether you’ll find the same joy in anything, ever, again. Everything feels and tastes bittersweet, a bit off. Or worse, flat and tasteless.

As time and things move forward, life inescapable, joy and happiness start to pierce through. Yet, the guilt of giving into that, takes the shine off those moments. A smile that doesn’t quite reach the eyes, or a laugh from the throat- too loud and sudden- rather than erupting from the belly.

Three years ago, in the midst of our really, really shit year, I booked a holiday for Wolf and I. Just Wolf and I. Call it wilful ignorance, or wild hope. Or just the fact that we needed a break. After two miscarriages, and worsening news with RD’s health, we really, really needed a break.

Four months later, I was begging for refunds from Ryanair and Airbnb, I was asking consultants to write letters to explain that as RD could now die suddenly, we weren’t able to travel. And at no point in the future could we see a time when we’d be able to. I’d felt so embarrassed at my naivety, that life surely was going to be okay and get better.

After RD died, I couldn’t imagine my anxiety easing enough to leave my children ever again. That I’d ever not need to lean my face close to their cherubic sleeping faces and feel the warm, sweet sleep breaths.

Yet here I am, at an airport, just Wolf and I, readying to head home after 4 days in Croatia. I’ve travelled with work since returning, but having shared such a tragedy with my husband, he is my everything on the ground and at home. I know implicitly how the fear never leaves his heart too. For us both to go away, it’s felt monumental.

It’s a significant birthday for Wolf, and marks the end of our decade of being married and starting a family. It deserved something monumental. So on a cold January day I booked this surprise for us- childcare and all- to a place before that decade began we had always talked about going to.

Mostly I forgot about it in the lead up- that’s what domesticity and hectic work schedules do- but in the final week before we flew I swung between excitement and the guttural stirrings of panic. It didn’t help that the day before we left DD was beyond challenging.

In a bid to get her out of the house, and try and placate whatever was making her that way, I asked her if she was worried about us going away. “Yes. Will you come back?” And I remembered that in Disney films, parents frequently go away and don’t come back. I felt her fear, unvoiced properly, but acted out in the turmoil of emotions she was going through that day.

I can’t believe I’m able to say everything went to plan. The sun shone, Dubrovnik showed all sides of its beauty. We drank, held hands, swam in the sea, explored. We laughed from our toes, we had barrages of inane conversation. We spoke openly and honestly about the things we had endured. And how, in spite of how at times we barely clung together, we did. And how, in the dark, we found each other to be our true lights.

We, like so many parents, spent time talking about our children. All of them. How relaxing it was just to care about our own needs and follow our own choices. Yet, how we missed their demands and needs.

The truth is, we wouldn’t have had this holiday had RD not died. Whilst that’s immensely hard to swallow, I can only view it with some gratitude. For if anyone taught us how to breathe in the good moments, and let your senses guide you, it was RD.

Betwixtmas

I’ve heard it called all sorts, from the U rated ‘betwixtmas’ to the closer to the knuckle ‘festive perineum’ (although I can confirm the perineum is NOWHERE near your knuckle).

For most, the lull after the frenzy of Christmas and before the giddiness of New Year is full of bloat and bewilder. Chain eating cheese with crackers and washing down with a gout inducing array of festive booze. Of finally conceding to eat the strawberry and orange creams out of desperation and boredom.

For me, this year, RD’s memory sparkled in the lead up to Christmas. His spirit felt present in the magic shining in his siblings eyes. He was in the strong smell of pine, the twinkling lights, the sound of sleigh bells. He existed within the happiness and love shared between family and friends.

Not that he and Christmas always had a positive association- for three of his Christmases we spent within the confines of a hospital. There were only two where he could bizz around on his Scooot, but by god they were amazing. He felt involved and connected.

This year marked our third Christmas without him and we had a really good Christmas. It felt fresh and new and full of promise, my sister did a cracking job and it was easy to stay in the moment. Plus DD was so full to the brim with excitement it rubbed off on all of us. Especially BD who ran round in circles excited by something he didn’t understand.

After the last Brussel had been reheated, the carcass of the meat picked over and rustled up into something, I suddenly felt kneecapped by grief. As if I’d fallen off the Christmas cliff. I felt that bone grinding exhaustion take over, my eyes hurt.

The Christmas lights now looked forlorn, and I couldn’t find RD in the wreckage of wrapping paper and pulled crackers. There, in front of me was 2019. And yet again, he wasn’t going to physically move forward with us.

That feels as desperate as it sounds, and for all that we’ve moved forward as a family this year, it can be the sneaky bastard that grounds us. A desperate longing for the past (and naturally a positively edited version of it).

I know from experience that tomorrow will be okay though. A new dawn will still hold the same promise, the love for RD will shine on into our lifetimes. We are here for him, to keep him alive when he can’t be. And that’s pretty motivational.

Say What?

“My son died”

“RD passed away”

And many more similes alongside it. I’m not sure when it happened but at some point my brain cut the link between the words I say and the feeling you would expect them to invoke. An ever so silent Snip Snip.

Now they tumble from me, well trained. I see where they land, piercing the conversation. Sometimes I turn my eyes away from the shock and pain they inflict on others. The minute flickers across the eyes, forehead and mouth as they wonder how to respond. Possibly the eyes turning glassy with tears yet to be spent.

Self preservation took a large pair of scissors and cut the golden threads attaching these words to my heart. Occasionally I feel them prickle as the try to reconnect, only to be stopped short. Not now, not now.

Now is when I’m least expecting it. I can be sat in silence, or in the middle of a conversation. Seated or moving. There isn’t a rhyme or reason and suddenly it’s there. The big, bold fact that actually, my son died. It’s heavy and cumbersome, it can’t be blinked away.

Fact carries some forever truths: he will always be dead. That sounds ridiculous, because of course I know that. Somewhere though, my brain wants to cling to the hope that I will hold him again, see him again. That I won’t just have old photos, memories of a different time and place.

As the two year anniversary looms, I see my current self managing much better on the outside. I feel myself managing a little better on the inside. I seem to question the joy that my current life holds less, control the edges of guilt about that. For if this is a lifetime of living with loss, I don’t want to have wasted any vestiges of joy when they’re there. My two living children in no way replace the space where RD should exist, but they do fill the physical hours of the day with the standard happiness and frustration.

I feel the bouts of sadness and grief as they wash in like the tide in these preceding months, as the long, warm days start to close in, incrementally darker and cooler. With it I sense my anxiety rise up to meet them, a double sense of crazy if you will.

In the middle I acknowledge their weight, and sometimes succumb to them. Try to get to understand them a little more, to embolden me to shout them down. Actually no, I imagine me holding and placating the grief. Feeling my way through my memories of RD in the process, enjoying the pleasure and pain of remembering him and missing him. Find calm by giving it space. With the anxiety- and it will attack whatever it feels like; work, my sense of self, my abilities as a mother, travel- I look at it straight on, and I’m starting to be able to minimise its power.

I often wonder, whilst passing through crowds at train stations and airports, now I’m back at work and have become part of that crowd again, who else in it is battling invisible inner battles of will. Words spent with absolutely no feeling.

“I’m fine”

“Good, thanks”

They’re not lies, but I can’t say they’re truths.

Live Young, Die Happy

The universality of all our lives is that they will end. We will all die, no matter what hot cross buns tell you, it’s inevitable and forever.

We may not be aware of our own preconceptions of our passing, for most of us it feels distant. Sometimes touched by that bumpy plane landing, or an emergency stop. Or an illness that lingers beyond our tolerance.

There are times when the loss of someone feels out of order: too young. Be that in pregnancy, at birth, a child, someone in their thirties. Robbed of a chance before that chance even presented themselves.

The rest of my life, however it pans out, will be forever marked by the loss of my babies, and my five, nearly six year old son. It is burned into all my cells, my soul. It hurts, often more than I am able to withstand. But withstand I have to.

With RD, our choice to not continue treatment wasn’t us wimping out. We didn’t give up. My battles changed from external to internal. How would we live without him? I was still fighting, right up to his final breaths in our arms, as to whether we had made the right call.

However, I’m not writing this to question our decision over our son’s life. That’s not up for public debate. I have seen and read more than I need to about the high profile cases recently. Mostly from people who have decided “what I’d do in that situation” having never been in that situation. All I can say, is this is wrong. I wouldn’t even cast my view on what they should have done, it is their choice with the evidence they had.

What I want to write about is a positive death experience. By talking openly about choices for RD, perhaps the stigma around not apparently fighting tooth and nail against the worst news any parent could wish to receive will stop. Or at least lessen.

RD’s life had been an uphill battle from the start. The minute he was born, I felt such overwhelming passion for him. We loved him beyond measure. Yet, we spent many hours willing him to pull through. To get home, away from the claustrophobia of the hospital.

He blossomed, yet frequently his body failed him. We fostered and changed our outlook when his cognition and development only ever grew in tiny increments. We always pushed for people to see beyond his obvious disabilities, see his soul as bright as a new penny. This included medical staff.

There came a point, as dialysis failed time and again, where we couldn’t keep putting him through it. It takes time for dialysis to stabilise the blood, and RD couldn’t understand not to pull at his dialysis lines that made him itch. He just felt pain and irritation. Every few weeks they would become infected, need to be removed and re-sited. Which is only done under general anaesthetic.

This was a cost of survival that we knew would worsen, and most likely, take him to the operating table where his ability to get life threatening infections at the drop of a hat would mean that’s where he would die.

Not in our arms. Not happy and pain free, but scared and traumatised. We couldn’t explain it to him, lessen the trauma.

From the moment we agreed with the medical teams to stop the path of treatment, I felt only incredible sympathy from them. They had come to love RD too, his dancing to the tune that signalled the end of his dialysis session brightening everyone’s day.

The hospice helped us plan every eventuality, be that sudden death as his potassium levels went sky high, or, as we hoped and achieved, minimal intervention and a comfortable happy last few months.

We were in constant contact with the hospice. They stepped in to get his medication right, even driving back to the hospital to collect some of them for us so we, as a family, wouldn’t have to return. For anyone who has lived a life in and out of hospitals, waiting for medicines from the pharmacy to be able to go home, the impact of this simple act is huge.

As the body deteriorates, it begins to slow from bottom up. Your bowels, and then your stomach are often the first to be affected. So, we began reducing the calories and strengths of RD’s feeds for months. As soon as he looked or seemed like he was feeling sick, we reduced them some more. This is not starving him to death, it is carefully caring for his comfort.

RD had a run of months where he lived and loved everyday, arguably the best days of his short life were in palliative care. We also did as a family, free from the chaos of intense medical care. We still forged against our demons. Were we still doing the right thing?

In August, I even asked the hospice to arrange bloods to be taken, as RD was doing so much better than predicted. Perhaps we’d got it wrong? It does happen- we’d known that medicine is fallible from our lives in and out of hospital.

It was arranged away from hospital. They called in a second opinion from RD’s old lead consultant from Manchester. That consultant travelled to our house on a Sunday to talk openly and honestly about our choices. He was kind, and open to debate.

In RD’s final week at the hospice, where he only rested with a syringe driver delivering a frequent dose of midazolam, a powerful sedative, he was calm. We played him music as he took baths. We held him in our arms in the garden, a gentle breeze and warm sun on us all.

We were fed and cared for as a family. We were allowed to just be together.

When RD died, it was still unbelievably shocking and raw for us, but he left us with a soft smile on his face. He looked perfect and peaceful.

Our lives have to continue, and we have to adapt to the pain and heartbreak. We have taken that pain away from my son, and so, for us it is one worth shouldering.

*I also know this isn’t always the care that is delivered, and I’m sorry if writing this triggers negative emotions. I just want to speak openly about our choice and ensure that this is delivered consistently*

Motherhood, Physically

5 times I thought I was going to be a Mother.

That’s 10 pink lines.

Or probably over 20, because who doesn’t need to check again?

And countless single lines forgotten like spent matches.

3 live births. For the curious, that was 1 emergency caesarean and 2 VBACs. For the uninitiated that V stands for *whispers* Vagina.

2 children I have only ever parented at one time. A boy and a girl.

Unless you count the couple of weeks I held my dying eldest child in my arms as his baby brother was miraculously forming.

Sorry for the morosity but that’s how it was.

1 time I was presented my ever so tiny daughter that had only completed half her journey in my womb. She was brought to my drugged up body and arms in a bread basket, wrapped in a blanket the size of a dishcloth.

1 time I knew I was flushing my genderless foetus out to sea.

7 years of having a son with full care needs, although with every development milestone BD ticks off I know this will soon change. I’ll have my arms and my body back to myself again. No more cradling and lifting the full weight of a child. I crave this freedom and yet I will no doubt grieve this new loss.

Whilst all this marks a slightly unique passage through early motherhood, I am I assume, like so many others. Individual and yet not.

I feel maternal guilt, constantly. I crave my own space and yet never want to be away from my children. I shout more than I want, lose patience when I know I could do better and somehow wonder how I ever got this job.

Something that definitely garners attention is our bodies pre and post natally. Whether we ‘snap back’ or are still blaming it on baby weight three years later. Media attention on celebrities buttoning themselves back into skin tight jeans 30 seconds after leaving the hospital with babe in arms. I’m looking at you, Kylie Jenner.

Well, here’s me. 1 week after giving birth. I documented it not out of pride but because I knew what that weight loss represented. It told the story of anxiety. Of a pregnancy where I truly believed the outcome was another loss. Not slightly worried. Not able to rationalise with myself beyond a few minutes at a time. The thought that this baby would also die was bigger than me.

I would go to clinics and they would tell me there was a little concern of my lack of weight gain in spite of a huge bump.

“Are you looking after yourself?”

Physically, yes. I ate because I wanted this baby to thrive.

Mentally, not really.

“You know, if you’re still struggling once baby is here, you should consider speaking to your GP”

So then I wanted to show people I WAS NOW OKAY. Who knows whether I was or wasn’t. I was just bouncing from day to day, maintaining that eyeliner just so.

Nervous energy meant I didn’t sit down for long. Piles also didn’t help.

Flitting round the house, walking everywhere. Check on the baby, keep the house tidy, make sure DD was okay. Let’s go here! And there! Let’s be grateful the baby is alive and not miss a second. Just in case.

That weight loss isn’t a goal. I didn’t feel good. I felt weak and yet frenzied. I was short and impatient. So irritable and hormonal.

So as we hold others up as comparison, perhaps in person or their images foisted upon us on social media, we should think deeper. Be kinder to our own bodies and others.

Just recently I’ve started running again. I’ve tried and stopped in the 10 months since BD arrived. It hasn’t felt right. My head was too fuzzy, my limbs felt like overcooked spaghetti. And let’s not mention my pelvic floor.

Yet now, it suddenly feels right. I feel the electricity of power in my legs again. The peace in the sounds of the air, the time to pound, pound, pound through my thoughts with the occasional stop to shout for Eric.

I don’t really care what physical space I fill right now. I feel my core growing, my resolve returning, and my uninterrupted time to be with RD in my thoughts back.

Today I Cried

Today, Monday 5th February 2018, I cried. Just once, but it came with force. A projectile cry.

I cried, and it was ugly, and guttural, and weirdly sounded like I was laughing hysterically.

I cried because my daughter had tested me at every turn this morning. Negotiating, soothing, disciplining. On repeat. At speed. An hour of my morning lost to this familiarity that today felt like it was breaking me.

I cried because I snapped, and threw her pigging My Little Pony hat back up the stairs,ย  BECAUSE I’D HAD ENOUGH OF NOT BEING LISTENED TO. It fell between the banisters, and managed to be the exact weight that was going to be the final test on the nail holding up Gerald, the floral giraffe bust in our hallway, so he came tumbling down wiping out all and sundry beneath him. Including said daughter’s shoulder. I cried because her tiny face looked so scared and lost.

I cried because she then fell on the way to school. I ran to pick her up as she sobbed and screamed. Took in her torn tights and bloodied knee. Her muddy hands and face. Her steamed up glasses brimming with tears. Her sad wobble as we managed to walk the rest of the way. I cried because it had bled so much more. Because the teacher soothed her and I didn’t want to leave. I hadn’t said sorry to her enough.

I cried because I have a lot to do, and yet today, there is no pot of energy. The normal urge to do, to keep doing, doing, doing wasn’t there. I cried because I couldn’t even work out what I had to do, I just knew it was there. The mass of unfinished jobs.

I cried because my husband told me it was okay to do nothing today. Sit down, watch television. I cried because sometimes this is what I’m most scared of, the nothingness. When I have to feel the shape of the still, and truly know what is missing.

I cried because when I got home with the baby, he cried. He cried and cried. I pulled my neck picking him up, I yelped, he cried. I fed him, I cuddled him, I played with him. And yet still he cried. I couldn’t even take up the nothingness. In desperation, I tried to settle him down for a nap. He bit me hard, whilst feeding him, and that’s when I cried.

I cried and held him, and he no longer cried. He curled his podgy fist around my ear and silently gazed as I sobbed and sobbed. I said sorry and tried a lopsided, mascara streaked smile, he smiled back. I put him down, and we both cried together, a wall and a door now separating us. And just as he stopped and drifted off, I stopped.

I thought about this cry. Why it felt so uncommon. So loud and unwelcome. Why today when I have the same reasons to cry most days?

I thought about all the reasons I don’t cry. Yet, I can’t reason with it. I can’t find reasonable cause for all the days where I have energy, and find light in the mundane and yet fast pace of the everyday.

I thought that this cry felt alien when for some time, now in the past, it felt like my shadow.

Then I realised, everyday, RD’s absence fires tiny grenades. Small, insidious craters. With time I am learning how to absorb these more and more without flinching, sometimes without even conscious thought. I talk about him, and his space within us all, but not very much about the space he has left behind. Sometimes because I’m not very good at letting other people hold the weight of that emotion, and sometimes because I’m not even aware I’m holding it at all.

Today I cried, because it was everyday. Today I cried because it was the 5th of the month and a Monday. RD died on the 5th September 2016, a Monday. And that seems reason enough, for now.