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*

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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,  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.

A Sense of Belonging and Longing

It is really difficult to find a sense of belonging back in the world when you lose a child. Or, I assume, the death of anyone particularly significant. I assume, and I try to empathise, but of course I am still viewing it from my experience.

In fact, my assumption that it is difficult for everyone who has lost a child to find a sense of belonging is completely biased from my own experience. That though, is the reason why it suddenly feels difficult. I feel as though experiencing his death has taught me to challenge assumptions. To question snap judgements. To not lose sleep over delivery versus intention anymore: look beyond what is being said and know that it comes from a place of kindness and love. Hopefully.

A current feeling, one that I don’t know whether is temporary or permanent, is the feeling that at the moment we lost RD my hope morphed into fear. In that when RD was alive, and we battled many times, I had to plumb my reserves of hope. When he recovered, time and time again, it felt like we were able to taste invincibility, briefly. That carried us forward to the next episode.

When he wasn’t improving, when he died, when the worst thing happened, I suddenly feared that this wasn’t the end of Bad Things. His death came after a multitude of Bad Things. When you added 2 + 2, it just equalled more shit. So now, when things seem surreal in their everydayness, I live with an underlying fear of what next? Who next? I check on BD frequently in the night, I watch DD scramble up climbing frames and want to vomit, I find I battle irrational fear demons when I am not with my family. As if my watchful eye might prevent life, and therefore death, truly happening.

On Saturday, we attended our second bereaved parents group. I’m not really sure what I expected from the first one, but I hadn’t anticipated such a test of that fear. To connect, you have to accept and hear each other’s tragedy. To push your own into the corner a bit when it already feels like it fills all the edges. Suddenly my anxiety was tested by stories of sudden, unexplained events. Or of suicide. Selfishly, I felt overwhelmed by all the bad things that happen in life.

I was also, in a way, excited. Excited about the freedom to perhaps be at ease, to know that talking in person about death didn’t need to be couched in concern for other’s emotions. That was there, definitely. But just as there were so many different experiences of loss, there were many different reactions to it. Some of which I felt aligned with my own, some of which I found empathy for, and some of which my deepest sympathy for.

To sum it up, I was exhausted. We were exhausted. It did open up more conversation about it between Wolf and I though, and I felt lucky to have that dialogue. As, of course, even our ways of coping are completely different with the occasional counterpoint.

I am reactive, and emotionally unpredictable (read: quite often impossible to live with). He is introspective and calm, but internalises to a point where he seems untouchable and uncaring (he isn’t). It balances, but we also have moments where we don’t always like each other. When we signed up to ‘until death us do part’ we weren’t expecting this.

The second meeting was easier. Conversation flowed with less apology, but probably with less emphasis on telling our own stories, and more about how life was now. The thing about that though, as I lit and blew out a candle for RD, was suddenly it sharpened the edges on the huge gap in our lives without him. He often still feels so very present, so finding belonging in a space of so much loss, meant that grief hit like a freight train later.

We bought and decorated our Christmas tree yesterday. We fought over getting the wonk straight, and unravelling pigging fairy lights whilst an over excited five year old wanted to place a billion decorations on one branch NOW.

When it came to putting the decorations made with RD’s fingerprints on, I felt the trapdoor open. As I held it, I realised I was still expecting a new decoration. One crafted by his skinny, inquisitive fingers again.

Instead, I had one that was already a year old.

Alternate Reality

Do you ever dream of your Sliding Doors moment? The one where instead of turning right, you go left. Where you chose him, not him. You bought that house, not this house. Took that job, not this job. You let your mind wander down the alleyways of that different life, that ever so slightly different you, wondering if actually, that would be you living your best life?

In so many ways, life right now feels rebooted. Someone has restored the factory settings. And whilst I don’t feel like I’ve lost the last seven years, I’m finding the folder of memories difficult to access. Mostly because so much of this new version feels exactly the same and yet totally different.

I have, a daughter and a son. Two children. At six, nearly seven, months BD is such a replica of RD and the skills that were forever his. I don’t think I noticed that in the same way with DD. The axis where she mirrored all his long fought development, and then forged past it was probably in the foggy early days. The days where we were in and out of hospital. The days that I’m not sure exactly how I, or we, powered through. Although fairly sure I could have been sponsored by Double Deckers.

The other night I was woken up by babbling coming from the boys’ room: the room they have shared but never together. Suddenly I didn’t know when I was waking up: it could be now, or two years ago. The sound, the delicious sound at 3am, could have been either of my boys. At that moment, and in so many moments right now, I yearned for both of them. I wanted to go in and scoop the bald podgy one, and the skinny hairy one and see that both probably weigh the same in my arms right now. To have my hair pulled, and the inside of my mouth probed with little inquisitive fingers from both of them.

It makes the grief feel thick. Like catarrh in your throat. Like someone leaning heavily into your shoulders. I struggle to articulate it in person, the person living this rebooted life. I want to plug into my pot of gratitude, for so many times when things were hard for RD, I yearned for this unfettered life. A life with children who ate, for whom illnesses and sleeplessness were resolved with a cuddle and calpol if the end of the tether was reached. I longed to walk my children to school, kicking leaves and playing games (current favourite being win the race and give a double thumbs up). Nobody questions that my children are thriving, it’s visible in their pink cheeks and bright eyes.

I am who I always looked like. My personality is mostly untouched. Most of the time I am in the moment, I am who you see, I am the words that I speak.

A lot of the time in fact, I feel like an alter ego, an oh so regular vision of motherhood. I fully embrace this new life I’ve been granted, and I let the guilt that comes with that go. Otherwise, new guilt will creep in- guilt that DD and BD’s lives are dictated by the shadow of RD. Especially DD, whose childhood so far has been sandwiched between waiting, being gentle and accepting change before she can understand it.

I don’t say that sometimes my eye sockets ache, that the point where my shoulder blades meet is as taut as a drum. That some days, I’m not sure how I’ve made it out of bed. That I keep doing, keep busy, because the walls I stare at give me no relief.

That in preparing sandwiches for DD’s birthday party, I was frozen by a panic attack. I was trapped with a sharp knife in my hand, scared by my blurred vision and pounding heart. Hearing BD cry to be picked up but unable to move. Knowing fully what I was experiencing but feeling powerless to change it. I wasn’t powerless though, in there, in the wooshing and terrible fear, I remembered to count my breaths. To move slowly. To get to the phone to talk to someone and minimise the surge of anxiety. I do apologise to the child that received the cheeseless sandwich though.

That I sat at DD’s parents evening, scared by the feeling that I was going to burst into tears. That she is doing well, and ultimately we are the people responsible for her, and in part for that doingwelledness, and I looked for the more responsible person than I felt.

Whatever way it is that we’ve turned, the door that we’ve taken instead, sits somewhere between the past and the future and the present.

Through this door, I can fully appreciate the expression ‘a blessing and a curse’.

Wave of Light

Today, the 15th October, is the end of Pregnancy and Infant Loss awareness week. It is marked by a ‘Wave of Light’- a space for people to share and reflect on their losses through lighting a candle.

Two years ago, the fabric of our family began to unravel, in October. I felt bitter towards the irony of suffering our first loss during this week. We lost Tiny, discovered as a missed miscarriage, at our anomaly scan. It came after a period of stability from the whirlwind early years of RD and DD. It felt ominous and the loss somehow expected: in spite of us making an active decision to try for another baby, I had always felt the taste of unease on my tongue in that pregnancy. She and RD were the only babies we actually tried for, and in the space of a year we had to say goodbye to both.

That year, October 2015 until October 2016, was a wave, or continuing waves but not of light. It was crash after crash of darkness, as we sat on the beach helpless. Trying to tie stuff down, hold each other up for air, brace ourselves for impact. Of course, that’s a poetic way of looking at that year. The reality was just trying to navigate everyday life, like everyday people.

There was a week that sticks in my mind. After Tiny, we fell pregnant again very quickly afterwards. Too quickly with hindsight. At our 12 week scan, another missed miscarriage. Crash. My sea legs were failing me. I was back at work, and had a few days in Spain. I was flying into Alicante on Tuesday and out of Barcelona on Friday, such is the pace of work as well. Wolf was in Manchester at the start of the week. We were somehow cobbling together a plan. Monday, he crashed the car. An actual physical crash. He’d been driving past St Mary’s hospital, where RD had spent his first four months of life, digesting the recent healthcare concerns we were dealing with over RD. Distracted. He was unharmed, the car less so. We wobbled back onto our physical and metaphorical legs, and I flew out on the Tuesday.

We had babysitting booked in with the Grandparents on the Friday, as Wolf was going to come to Manchester (by train…) to meet me after I flew in, and we were going to have a night out with friends. Wednesday, he calls. RD’s blood recent blood results were not plotting well. He was being called in for more, over a few days. Still, we’d become accustomed to these things often being manageable: a tinker with fluids here, a change of medications there.

Friday came. It was Spring, and yet the UK had seen some unexpected snow storms coming in. I was flying from Barcelona to Manchester. It felt like we’d been circling for a very long time, and we had. The announcement came that we were actually going to have to land at Birmingham, wherein a plan would be made for us to travel to Manchester. I had been up since 4am, I gazed out of the window trying to stop the slow rolling tears. This all felt Too Much. We landed at Birmingham and I turned on my phone as we sat on the tarmac. I had missed calls from Wolf, which to anyone who knows him, was odd in itself. He has the most immobile mobile phone. I called and eventually it got through. He and RD were on their way to Leeds General Infirmary. RD needed admitting so that they could monitor and try and reign some control on his rapidly declining kidney function and wonkier blood chemistry.

I can say, at that time, I have never known a desperation to get home like it. Yet, nobody was home. I was internally climbing out of my own skin and externally passively staring out of an unmoving plane as snowflakes drifted past. A raft in the eye of this storm.

I did eventually make it to Manchester, late. Too late to then sit on the M62 in the snowy traffic jams. So, I went out with my friends as planned and attempted to pretend that I wasn’t living the life that this week felt like it was tipping into. There’s no rule book for dealing with awful, worsening things in life. I can however recommend the odd blow out. The loosening of the pressure cooker.

After that week, the waves came ever more closely together, and so frequently that we had to let go of everything and just try and hold onto each other. Dialysis, failed dialysis, roadside seizures, operation after operation. Hospitalisation after hospitalisation. I threw work over the side of the boat. Wolf, his PhD. The pain of baby loss completely submerged by a new pain. The tsunami of having to make the right medical decisions for RD.

Short, shallow breaths. Big gulps of air. Huge cuddles with anyone we could cling to, to see if this would stop.

Resigned to the fact it wasn’t, the last thing to go overboard was our expectations. We didn’t know when it would stop. As trite as it sounds, our only option was to keep riding the storm and grasp at the vestige of hope that it would change eventually. Just the matter of a surprise pregnancy after loss to get through right?

I still don’t know if it’s stopped, but just recently I feel like the pace has changed. I feel like I’m inflating my lungs more fully. I have time to sniff my living children’s heads, listen to their endless stories (DD) or that snuffly feeding sound that makes every cell in my body swell with endorphins.

I’m breathing into grief. I’m giving myself time to hurt. To wade my way back through the waves and feel them afresh. To be mindful. Mindful of the fact I don’t know when I could be washed out to sea again.

The Pot of Gold

BD. I realise I’ve been remiss. There’s always so much chatter around your big brother, and from your big sister, that I realise I haven’t truly marked in the sand what utter, unbridled joy you are bringing into our lives. So here it is, my first piece of writing about you that doesn’t involve a story about how I pushed you out and turned the air blue.

It’s fair to say during my pregnancy with you, so soon after losing RD, I was wound so tight with anxiety it felt like I breathed constantly in short, shallow breaths. You did also squash my rib cage quite a lot. Looking back, you could have scraped me off the ceiling with a spatula.

As soon as you were here, in our arms, I could feel the gentle uncoiling of all of this. It’s been emotional, baby, but for all the right reasons.

You are a good baby. I find myself fighting with saying that, but since having you, I understand what people are getting at. You quietly thrive, whilst being as portable as a handbag. You peek over the edge of slings or from under the hood of your pushchair wide eyed and angelic. Your demands seem gloriously simple, and you have such a gentle, curious nature.

We call you the potato. Not just because you are bald and massive. Okay, okay, quite a lot because of that. But also because you always cheer us up, a big carb loaded cuddle.

For the first time I’ve really let my mothering anxieties go. I’m not a perfect Mum, but I’m perfectly happy with the Mum I am. I’ve learned that you can only do so much, the rest of it is just riding the highs and lows of every stage. You know when people say “it’s okay, nobody died/I kept everyone alive”? I feel like understanding that sentiment a little deeper gives me a renewed confidence.

(Although I still check on you ALL THE TIME. Watch you gently blow out through pursed rosebud lips almost silently)

I take in every detail of you, astounded that we made the wrinkles on the back of your knuckles. Your bright, dazzling irises. Your perfect little wotsit toes. A true appreciation of the miracle of reproduction.

You start conversation. You’ve brought family together after a time where it felt like getting back up after so much loss was futile. You give us all fresh hope and consolation, just as your name means. Child of consolation. 

You have eyes just like your brother. You have a mouth and smile so full of joy like your sister. You are also completely yourself and I marvel that we have had anything to do with your creation. Also, because we really can’t remember that…

Thankyou for making DD a sister again. She may not thank us right now, and struggle with feelings of jealousy but the way your eyes dance when she walks in the room, when you search her out to give her your best, gummiest smile, is priceless. She doesn’t need to try and understand the way you love her, it beams from you.

BD, you came to being at a time when I didn’t know if anything could be truly good again. Angry at life, and my body having failed us before. Now it feels like you were always going to be here, but this sense that you will decide every single move defines your life already.