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.

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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.

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.

Nobody Puts DD in the Middle

I am a middle child. I can boast many of its finer characteristics, such as attention seeking, strong will and a low level resentment towards my siblings and their superiority in birth chronology.

I am different to my siblings. They are different to each other and yet possess similar abilities to do well at school and never get in too much trouble. These are things I didn’t do so well at. But it’s okay, I’m creative (not always meant in a complimentary way).

DD is my second born, but as soon as she came into our lives I knew she’d be a middle child someday. I knew she had the feist and pizzazz to own it. She is a thousand kinds of fabulous and a massive pain in the arse. My Dad has described her as “A mini you. Actually, no, you on steroids.”

She came second in line, but achieved so many firsts for us. She quickly overtook RD, and made my mind boggle at how quickly she grew and changed. Each time this came with a little bittersweet taste but we revelled in the normality.

For DD, her understanding of her big brother went against her understanding of size and time. By 18 months she was bigger than him, and began to help us teach him. Although the time she tried to get him to sit up by pulling on his gastrostomy tube was definitely an unorthodox method.

She was too young to remember that she was due to be a middle sister before. I still often wonder what my other little girl, Tiny, would have been. What whispered secrets and games they would have invented, just three years between them. Whether she would have been such a force of nature, or allowed her big sister to lead the way.

The bookends to DD’s middleness don’t match. We lost and gained in one fell swoop. More than that, its difficult to explain, and for DD to grasp where she sits between her brothers. It’s something that she’ll no doubt find difficult to articulate as she grows up too.

In less than a month she starts school. Like her mother, she’s not backwards in coming forwards. She will answer questions or talk about RD with a fierce honesty. She is proud as punch about BD whilst stealthily trying to break his arm.

I suppose, just like a classic middle child.

But you DD, whilst classic, are extraordinary to your Dad and I. Our constant. Our apex.

Tired

I started to complain to my husband about it the other day.

He told me to go on the internet and complain as that’s what people do now.

So here it is. I’m tired. Exhausted. Knackered. Shattered.

And it’s doing my head in.

I want to feel some get up and go. Some wind in my sails. I’ve got this itch to be the active person I am in my head. To do a juice cleanse or some shit, but I’ve still not popped to the Co-Op for my milk yet.

I’m trying hard to give myself a break though. When I’m scooping baby sick out of the turn up of my jeans or using fairy liquid to try and remove the baby poo stains out of vests, baby grows and playmats. (Second fact is a top tip by the way. It really works)

It’s when I realise I’ve been a mother for seven years. Seven. And yet my oldest living child is four. Even if RD were still alive, his development hadn’t really progressed beyond a year anyway. So any chance of the mantra “it gets easier” hadn’t really happened yet. I have been a mother to very young children for seven years.

Thankfully RD had developed enough that he could entertain himself. In fact, if it weren’t for the nappy changes and vomit catches, he was such an easy going soul. Most of the time. But it had taken him about two and a half years to get to that stage.

In the relentlessness of it all, there’s a bigger beast to bear. Sometimes, it’s boring. Actually, a lot of the time it’s boring. My brain is filled with calculating getting us all up and dressed. Fed. Getting the washing on. When the next nap will be. What I’ll do in that nap. The frustration of that nap happening on me mid feed whilst DD has a meltdown from lack of attention. So actually I did sweet FA.

Four O’clock. When bedtime seems so close and so achingly far away and I’ve no idea how we’re going to get to it. I still need to go to the Co Op for milk. The dog needs walking. All the day I’ve fantasised about painting my skirting boards, alone, untouched. I stuck a bit of masking tape down when I probably should have gone to the Co Op.

What’s really exhausting though, is grief. It churns away, burning at your energy reserves. Even when I feel like I’m not actively engaging with it, it’s ticking, aching, invading each thought process. Every activity I do, it says “remember when…” It alerts me to his absence.

The clicking on of the kettle: Do you remember when you had to sterilise all RD’s feeding tubes and syringes at least three times a day? Opening the cupboard for a teabag: Do you remember when that cupboard over there was filled completely with medicines, and now it just has calpol? Going to get the milk out the fridge: Do you remember, oh shit, you forgot to go to the Co Op didn’t you?

Here I am complaining about the boredom. Grief says “remember when you had to raise a newborn by a hospital bedside? Remember all that you lost, how can you complain about being a Mum?” Grief, is a dick.

There was a period of time when I had the energy I want back. I mean, yes, it was fuelled by a desire for peace and to indulge my inner introvert, but I ran two marathons. I worked nearly full time. I was kinder to my husband. His breathing in the car didn’t make me want to punch him. Somehow, I will hopefully wend my way back there.

The grief will just have to come with us. But like my young children, I hope it quietens down a bit and behaves itself.


 

The Unscratchable Itch.

“Mummy, what are you doing?”

(I am helping colour in her picture. I always figure that even though DD won’t understand what I’m saying yet, I go with the full explanation)

“I’m shading in this bit with a darker colour, to make it look 3 dimensional”

“Oh okay. Mine looks like three dalmations too”

“Mummy, can we go and sleep at the hospice again soon?”

“No sweetheart. We can go and visit, but there’s no need to sleep there any more, we had sleepovers when RD was poorly and when he died, but now it’s for other families to have sleepovers there”

“But what about when BD is more growned up? When he is poorly”

F*ck.

Life currently sits somewhere between endless monotony: feed, wind, comfort, change nappy, repeat and mania: crying (both children), undone shoelaces, elbows dug in, me saying NO. Swearing internally, or in hushed tones behind kitchen cupboards. A smell of baby sick barely discernible but constant. Waiting out jealousy tantrums.

My mind is seeking out to busy itself, in this half bored, half crazed and sleep deprived state. And I am the very person that knows that these days are long but the years are short. I have that as a low level soundtrack playing, waiting to kick up the guilt that sometimes I AM NOT LOVING EVERY MOMENT.

There is so much to love, and I inhale it deeply. My daughter’s sense of humour, twiddling her hair and singing the songs from Trolls on its billionth and one airing in our house. Pudgy fists grabbing at me, smiles and gurgles from my glorious lump of a newborn son.

There is a void though. It feels a little like my insatiable breastfeeding thirst and hunger. Permanent and sometimes cloying, spilling over into rage about unopened bathroom windows, and decorative trays being used as dumping grounds for the excessive amount of stuff emptied from my husband’s pockets.

I can’t fix it with a new kitchen floor, but it might help. Painting RD’s room, so that it can blend into a slightly altered space for BD feels important, and yet impossibly hard. Not just because BD is clingy and needing fed on a regular cycle. Busy busy, trying to scratch the itch. Scraping at some control. Running away from myself and yet into myself and the memories of last year. Of the last five years.

Pushing myself to get out and walk and walk. Where I am free from being touched and demanded upon. Where RD lives in the breeze clearing my mind, so I can be with just him.

I’m not daft though, the end of the route needs to involve cake. That helps.

Pants on Fire

It’s not like I go out of my way to lie. In fact, often, perhaps it’s myself I’m kidding on more.

Is it really lying when the truth is inconvenient. Uncomfortable. Inconceivable?

It starts innocently. My newborn baby opening up a conversation without uttering a word.

“How old is she?” Funny how 9 times out of 10 the gender guess is incorrect.

Truth: “He is (insert number of) weeks”

“Oh, sorry. Is he your first baby?”

“No” -gawp around inwardly for an answer- “Third”. There it is, lie number one. Two babies unmentioned.

“Ah, an old hand then. What do you have at home?”

“A boy and a girl. 6 and 4.” Mega fat lie alert. Or is it? 

You see, RD still feels so very present, in that the space he leaves behind is unfillable. It sparkles, fizzes. Sometimes feels as murky and pitched as a black hole. He is stitched into every atom of our house, our hearts, our brains. He is here and not here, always. But that’s not an answer for the checkout in Aldi.

There are lots of new decisions to make around raising BD, and I wonder what a snapshot of that looks like. Probably not like some of the truths that sit behind them.

It started with DD when she was born. To get her and RD out of the house in his wheelchair, or to survive the monthly hospital stays with RD and a newborn, she spent her first year in a sling. Strapped to me closely freed up my hands and calmed her. Win win.

Now, with BD, again, I rely on the same. 

“She looks very cosy in there.” Can’t always be bothered to correct gender. 

“Do they not get too hot in there?” 

“Always seems a miracle they can breath in there”

The truth: I love feeling the heat of him, the weight of him, his breath damp against my chest. After a pregnancy so full of fear, anxiety, and a desperation to get to the end, with a vague grasp on it being successful, this is my exopregnancy. He’s on the outside, where I can see and believe he’s okay. But here, tucked in next to me, he’s still part of me.

This truth, my trimester on the outside, lies behind breastfeeding BD as well. I am lucky in that bar the usual difficulties: soreness, leaks, tennis elbow, I don’t struggle. BD doesn’t struggle as DD didn’t before him. With RD I pumped and pumped- alarms set, sat in soulless rooms in hospitals. And he couldn’t tolerate even 1ml every hour. A fifth of a teaspoon.


With RD I felt I’d failed twice. DD helped repair some of those negative thoughts. And now, with BD, where I worried that something drastic may happen with my placenta or cord, here I can give him life and watch him grow. Not wait between scans. 

Plus, with all I have learned along the way, I have mastered no hands feeding. Which means I can feed and put on make up. Do my hair. And, more altruistically, dress up dolls and do jigsaws with DD.

Let’s cycle back to the fact this is my third child.


“Ha, with your third it just whizzes past. You completely let go of all the ‘should dos’ that you impose first and second time round”

Agreeing to this isn’t a lie. It’s true. But I’m so conscious of it, the stampede of time. Even in four, nearly five weeks, every tiny molecule of change feels drastic. With DD I was keen for her to show her next skill, after RD had missed or ever so slowly achieved the tiny steps that would eventually lead to something like a milestone. A yardstone.

So I take far too many photos. Which I spam far too many people with. I document and keep. Try to squeeze every cell of my brain to remember this as it is. But new cells, as some are ringfenced just for RD.

Because here’s the most uncomfortable truth. Sometimes, my arms and heart are so full of two children again, that the hole RD has left behind isn’t so big. Or maybe its edges feel less jagged?Because it’s reminiscent and yet completely different from before. I’ve got something I wished for, hoped for. Which after a plateful of everything I feared, I simultaneously take in voraciously and grieve that it isn’t as it should be at all.

30th May 2017, the chubby knuckles of BD. 30th May 2016, the delicate grasp of a desperately poorly RD.