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,  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.

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.

Happy Birthday?

Today is RD’s 7th birthday.

I wonder what he would be like as he should be moving from an infant to a junior. Of course, neither his size nor his cognition would be moving up in a stereotypical way. No doubt, if he were still here, I would be feeling the weight of that. I would be learning yet again to live with the rising fear in my throat: long term care needs, further adaptations. Eyes fully open to the fact that in that instance, life gets harder to navigate. Inclusivity gets harder to wedge in.

It’s difficult for me to write that, to admit to that, for fear that it is interpreted that I am relieved that he is forever five. That somehow I ever thought of him as a burden. Honesty comes with that price though, an interpretation that doesn’t cover the complexity of human emotion. The ying and yang of true love, and of being a parent, of being a parent carer. There’s a whole lot of greyscale. A lot of overlaps in Venn diagrams. It’s the playdoh after too many squashings.

It’s his birthday, and already I’ve had to shift about some vague plans. DD was up in the night with worms. Yes, frigging worms. Of all the filthy-starting-at-school-bugs to pick up, this was what she had the night before his birthday. I had to examine her bum by torchlight. There has been copious washing of clothes, towels and bedding. I’ve doused the house liberally with Zoflora. The day has started crankily.

On the walk from the pharmacy to school drop off, after she chewed her ‘gross’ tablet, conversations seemed to fall from nowhere.

“Mummy, did RD have to take tablets?”

“Yes, every day. Mummy and Daddy would crush them and mix them with water to go down the tube into his tummy”

“Could he not chew them?”

“Not really. Do you remember what he did like to drink? Do you remember his cup?”

“Was it purple and sparkly?” “Yes!” “Did he like strawberry juice?” “No, just water” “Did he not like anything else?”

Spirals and spirals of conversation: did he chew toys? Did he suck his fingers? Did he get worms?

They’re reading Aliens Love Underpants at school. We have a copy somewhere, bought for RD, with noisy buttons down the side. I’m fairly sure he used his minimal muscle mass to rip book from buttons though, so I mentioned this to DD, but that I would try and find it.

“Sellotape should fix it Mummy. Have we got sellotape? We have the book at school but it’s not ripped because there are no babies in the class to rip it!”

“Wait, DD, RD wasn’t a baby.”

“Oh, I mean big babies. Ones that can’t walk or talk and like buttons and rip things”


“No, darling, RD was 5 when he died. You’ll be 5 in a few weeks. He was your age. He wasn’t a baby, he was disabled. Sometimes people are different. RD’s brain and body were different to yours so he couldn’t do things the same way.”

“Will I die when I’m 5?”


“NO! No, your kidneys are fine. Remember we talked about that the other day?”

The other day was Sunday, the day when she suddenly asked why he died. When I gave a potted anatomy lesson, and she giggled about wee.

It’s RD’s seventh birthday and it’s raining. BD is having an enormous nap in their shared room. It’s so everyday and yet it’s not. Plans are shifting and changing with the only real goal a party tea after school. I wish I could preserve it and keep it aside just for RD, but life is butting in and making itself so very pronounced.

I don’t know if I’m sad, or happy. I have moments of complete joy- the peels of laughter from BD as DD showcases her moves on the ‘stage’ (our kitchen floor). Dancing to the tunes coming from the new bright orange radio bought in RD’s honour for his birthday. I think back on birthdays past and they weren’t all rosy- I didn’t get to hold my baby until a week after he was born, wherein I cradled a tiny fragile bird connected by seemingly a million gossamer wires to an incubator. His first birthday where I cried copiously in the garage at his party as I knew he wasn’t doing anything anywhere near what would be considered a milestone. Where I realised his sensory needs were too much for a busy party.

His third, fourth and fifth birthdays were good, but lowkey. There was always just the slivers of sadness there as he aged chronologically but not developmentally. A mass of contradictory emotions.

I talked to Wolf about it the other night. If RD were still alive, I would want the 5 year old version of RD. I would want him to be forever five, where he was bursting with joy and interest and health. Where he’d just about grasped opening presents and surprises. Where I could still carry him, not necessarily easily, but he fit into the crook of my arm and the nook of my neck. I would want him forever five but not in the way we have it.

The Rise In The Fall

“Life starts all over again when it gets crisp in the Fall”

(F. Scott Fitzgerald)

There was something poetic about RD dying at the start of Autumn. After the long lazy days of Summer where he sparkled and forged through a failing body, he slowly curled up and entered the Earth when it is so rich and abundant with colour.

He wasn’t supposed to arrive in Autumn, he was due to be a Winter baby. Of course, had he arrived on time we most likely would have not had any time with him at all, so poor was his condition at birth. I remember the week, and weeks after his shock birth, the sun shone long and low through the days. 

I would lie on the post labour ward, struggling to navigate all we were dealing with- a premature birth, the physical aftermath of an emergency caesarean, worsening news about our tiny, fragile first child. Yet the sun continued to crack through the slivers of high up windows, warming the cold lilac of the walls.

He was born on the Monday, I was discharged the following Sunday. After what I came to discover was a standard delay in being discharged from hospital, I stumbled into the 4pm October low light. The trees had seemingly become golden during my incubation in the sterility of the hospital. All around, the damp ground smelt heady with decay and promise all at the same time.

The oranges, russets, reds and browns intermingled amongst the still brilliantly verdant greens marked his arrival. They remain his colours. This time of year, every essence of nature feels like him. The juxtaposition of promise as the fruits are ready for final harvest, with the slowing down and cosying up. 

October has become this for us- the month full of life and loss. RD’s birthday. Tiny’s birthday, even though she never took a breath. Our wedding anniversary. DD’s birthday. A month that crashes and ricochets between highs and lows. 

My natural initial reaction is fear of the month ahead. That dipping my toe ahead and wondering how we will mark all those events. How we will embrace the good and difficult and be spat out into November.

We have planned DD’s first ‘big’ birthday party. She is beyond herself with excitement knowing that October is coming. The ‘how many sleeps?’ countdown has been reaching fever pitch. 

The other day at tea, we were having the thousandth conversation about her birthday.

“Mummy, at my disco, can I have balloons?”

“Yes love. Do you remember whose birthday it is first though?”


“We’re going to have a little party tea for him on his birthday next week”

“Can we have cake?”


“And blow out his candles?” 


“Yay!” (Suddenly looks troubled) “But he won’t be able to eat it”

– Wolf pipes up- “He didn’t like cake anyway, he won’t mind”

And that, there is life. Like Autumn, the sun can shine on death.

10 Things I Hate About Grief

*otherwise known as what I have learned so far in the last year*

1) Did you notice the ‘so far’ above? That’s because I have learned that grief is not what I expected it to be. I’m not even sure what those expectations were to be honest. It’s just this thing that invades you, sometimes without notice, and you can just be going about your business and thinking things aren’t too bad and actually, you might be enjoying something again and then. Bam. The next day, your jaw aches. Your teeth itch. You feel like you’re catching the flu. You cannot be bothered to be a grown up but you have to.

So I have learned to try and accept that I have no idea what to expect and ride each thing out as it comes. The tiredness, the exhaustion though. That can do one.

2) That I love my children but I don’t always treasure every moment. I want to clonk their heads together and eat them for my tea because the very core of me wants to explode with love. You feel like that about your own too right? I do not need to tell you to hug them a little tighter and count your blessings.

The truth is, a lot of the time I also want to run a mile away from them and relish in solitude. I lose my sh*t with them and then sneak in an apology hug later. This is life. I don’t regret losing my temper with RD, or feeling the same things about my time when he was alive. He was delicious but he required very deep reserves of patience at times. Very, very deep… ones that I didn’t always have. 

3) That my mind constantly wants to justify the pain it feels. This means that sometimes I think some very odd things. Uncomfortable and unspeakable things. All I can do is acknowledge them as just that: a grapple to salve my soul and leave it there.

4) That I am changed. That in spite of best appearance I feel the old me caught in my throat when I talk. My spark is dulled, my anxiety about what people may judge of me is heightened. I question myself when I don’t talk about RD: am I being true to the fact that he fills my thoughts? I question myself when I do: does this seem like attention seeking?

I also worry about my Resting Grief Face. That I might seem rude, or disinterested. Or walk right past you and not see you. I’m only aware of it when I feel the wind change and I’m scared it might be stuck in that wrangled furrow.

5) That I am not changed but you may assume I have. I still love to hear, see and laugh about good things in your life. I want to be able to help if things are not so good. I still have a dark sense of humour, if anything, it’s even more warped now. I still love meaningless pretty things like tiles, wallpaper, good jumpers, crap telly and lipstick.

I am not saintly because my son died. I’m just like you but a bit more grief-y.

6) That sometimes it doesn’t feel right when you are described as strong. Really what it feels like is you’re just about keeping a cap on the crazy. I often think the worse I look, the more comfortable I’m feeling in my grief coat. I’m still not sure if that’s a good or a bad thing. However, I do always appreciate a compliment.

7) That just because I’ve experienced grief, I’m not that much better in the face of other people’s grief than I was before. I still stumble for words, worry about saying the wrong thing. 

So don’t worry about saying the wrong thing. Or not finding a way of sliding it into conversation.

8) That it makes people do odd things. In the face of this awful, awful thing it might seem like the only thing to talk about is that your newly oiled worktops are still a bit tacky.

One thing I’ve learned is that often the current action is just a reaction to point seven.

9) That there are just never enough photos. Never enough videos. Record the mundane and the extraordinary. Share them or don’t, whatever you prefer.

I didn’t ever take a photo on RD’s first day of school. I have photos of him waiting for his bus or taxi. Photos of him wearing a bit of token uniform. But I am still sad that I didn’t stop to do that. So now, with DD and BD I do, I will.

10) That now life goes on. It has a rhythm and cadence from young children that is familiar. Some days are just that, familiar and the loss feels background. Some days I feel like I can’t get around the house as it fills every room to the corners.

Sometimes I try to live in the moment and be grateful for all I have, fearful that still, something else might take someone I love away from me. However, I still need time to breathe and reflect on my own, as that’s the time I’m actually never alone, I’m back with RD.

So I’m trying to learn to be kind to myself. Kind to my husband, and his sock fluff on the bedroom carpet. Kind to my children and their demands, bum wipes and tantrums. And remember I’m not a saint.

Everything and Nothing

A year ago today, I felt the world shift imperceptibly to the left.

I went into RD’s room in the morning, but he wasn’t awake. He’d been a little unsettled during the night, but had fallen asleep on his bedroom floor mid play in the wee hours. I went to lift him up into his bed, where he stirred slightly. I saw then that the side of his face was swollen, in particular, one of his eyes was partially shut from the fluid around it. He was floppy and cranky, and I felt that burn of knowing. Knowing something looked like it had changed slightly and yet underneath all had changed fully.

Eyes didn’t sparkle as much. A smile was difficult to form. He was agitated but too tired to cope with it. He didn’t want to play with anything.

By the afternoon, I’d had to administer midazolam: a very potent sedative. It was in our emergency pack of medicines. I’d spent years tinkering with pain relief when RD was unwell, but this was a big change. Nothing else would touch the sides of his discomfort. It worked, but only temporarily. By nightfall, he’d had his second dose. By 10pm, the hospice had called an ambulance to come and get him as I’d rubbed his fourth dose into his gums. Because that’s how you give midazolam. And yes, it is as horrific as it sounds.

He lay in my arms twitching, and resting fitfully as Wolf ran around trying to pack their stuff together. DD was asleep in bed, so we agreed that he would travel in the ambulance to the hospice with RD and in the morning I would drop DD at my parents and join them. I was torn in half. I lay him carefully on the stretcher, answering questions, a quiet panic brewing. Knowing that he wasn’t going to come home, grasping at vestiges of hope that he might. And yes, that was as horrific as it sounds.

All of this still feels like yesterday in a different lifetime. In less than a week, it will be the anniversary of his death. 

How a year has passed, I don’t know. Falling pregnant with BD, and wishing away the time until he was safely born eradicated a large part of the year. Looking back, a lot has happened, a lot has changed and yet, RD still feels part of it all. I am petrified of reaching the anniversary, because then what? I’ve relived so much in this year, he’s stayed so present.

In my mind it’s like when you go to the opticians. When they slide lenses into the test glasses, and you have to say whether it’s better or worse. After a year, I feel like the lense is going to make things a little more blurry. The year after, a little more blurry still. The clarity of memory forever altered.

I went out this morning and tried to run away from the funk of these memories. To seek solace in fresh air and breathlessness. I thought about the association we attach to things: dates sit as having importance. Good China for special meals. Clothes for best. But these individual associations will mean nothing to the person next to you.

So next week, on the fifth, I will want to feel like the world has to stop. Just for a while. It won’t though. DD will be doing her second afternoon at school. I’ve planned a little way to mark the anniversary but no doubt nothing will go to plan- we still have a dog, a four year old and a four month old. What’s that adage: never work with children or animals?

I’m going to wear some of my clothes kept for best. We can eat off the fancy plates. I’ll take DD to school, we’ll get the dog wormed. All on this day that will feel like it means everything and nothing all at the same time. And hope it won’t be as horrific as I imagine.