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.

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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”

(Fuck)

“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?”

(FuckFuckFuck)

“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?”

“RD’s”

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

“Can we have cake?”

“Yes”

“And blow out his candles?” 

“Yes”

“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.