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.

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.

Contract and Expand

“How are you feeling?”

“Okay really”

“No, how are you really feeling?”

I feel there’s watchful eyes all over me. I actually feel reassured by it. I can understand why. I am a woman that insisted that they get my baby out because I couldn’t live with the solitude in the fear of his death any longer. I screamed that he’d died in labour.

But now BD is here, I slowly feel some of the weight of fear melt away. I’m not saying I’m not suffering from some outstanding crazily hormonal moments. I can hear Wolf shouting an AMEN to that. And the recovery from a fast, painful labour and an over production of milk has left me achey and exhausted and thoroughly fed up at times. But. But.

From May last year the testing began to see if I could be the kidney donor to save my son’s life. We knew the potential was there. I held that responsibility, and ultimately I have carried the responsibility that we decided in light of RD’s health to halt the process. I have held on, and held on.

Eight months ago, as one life ended and another was discovered, I have continued to hold on. My body responsible again for keeping another life alive, bearing it to fruition. I could barely scrape at the fear, I just continued to hold on. Another hour, another day, another week.

We have gone from a family of four.

To a family of three.

To a family of three with a dog.

And now again, we are a family of four. With a dog.

Contracted and expanded. But forever changed.

Very kind people tell me I look really well. It took BD and I two hours to get round Marks and Spencer’s the other Tuesday, a fascination with this tiny little soul strapped to my chest. The fact he was five days old. The disbelief I was wearing lipstick. But what I couldn’t say was this: yes I feel okay. Good in fact. Because my labour started the release, and I am still releasing.

Every drop of breastmilk that he takes, I feel the fear let down simultaneously.

I’ve been congratulated on my weight loss. And psychologically, having my own body feel like my own again so soon is healing. Literally a weight lifted. But it is borne from a pregnancy full of so much anxiety I lost weight. Fear has made me thin. So now, as my appetite returns, I enjoy the feeling of pinking up and plumping. A little regained control.

As I contract, I expand with feelings and emotions. When you’re holding on, everything gets held back. I worked. I studied, and completed a diploma. But I knew I was only poking at the heartache for RD. Now, tears are released too. Held back for too long, brushed away too quickly before.

Babies born after loss are referred to as Rainbow Babies. They appear after a storm. And sometimes I am happy to think of BD that way, but it’s more complex than that. RD wasn’t a storm. He was full of colour and life. He IS the orange in the rainbow if you ask DD. BD is a rainbow baby because he is returning some of that colour to us after the grey static of holding on.

Because Who Doesn’t Love a Birth Story?

Somewhere I still can’t believe I have one to tell. I feel too lucky. I’m gradually allowing that heightened fear I’ve carried for 38 weeks, 34 weeks since RD passed away, ebb away. Because his brother is here, all Ray Harryhausen animatronic startles, peach fuzzy haired and pink skinned. Long fingers, legs and toes. The D cupid bow lip.

But before I gush hormonally about this bittersweet euphoria, I need to go back to last Tuesday. Last Tuesday when I erupted into tears on the maternity assessment unit, and they wouldn’t stop. The day I told them I couldn’t do this anymore. I couldn’t carry the responsibility of keeping another child alive on my own any longer. I needed to meet him. I was climbing the walls with anxiety. I had spent another sleepless night obsessing over movements.

My consultant the previous Friday, the Friday where we weren’t sure if a baby would arrive before Wolf would finish the marathon, was so sure I would go into labour naturally. Unfortunately this meant she hadn’t updated my notes thoroughly enough to say that if labour didn’t come, I was to be induced. And now she was on leave.

At first, I was kindly told that I had to think of the baby’s needs. That if he wasn’t coming yet, it wasn’t his time. I appreciate what they were trying to say, but that nail hammered in my heart was enough. That mere question that I could be putting my own needs above the health and wellbeing of my child. So I channelled my tears, and the billions of hospital hours I have clocked up since 2010, and calmly presented the facts. The core being that I was physically and mentally exhausted. That was more of a risk to labour and my unborn child.

At this point, I cannot praise the attitude of the hospital more. They listened, rechecked my notes, escalated the situation and we came together with a plan. Another stretch and sweep administered, and a plan to induce me on Thursday.

Wednesday was just Wednesday. I feel I need to tell you that for continuity.

So, Thursday. I had to call in the morning for them to allocate me a time to come in. I already knew that after a chat about the ‘condition’ of my cervix, favourable apparently, that the most likely plan would be to break my waters and see what transpired itself. I googled Artificial Breaking of Membranes (ABM), and when told to go in at 1pm, arrived armed with questions. 

I’d been induced with DD in the days of Propess and consider that a successful labour. But you know how they tell you every labour is different? Probably REALLY should have considered that. But I had no fear of labour, and didn’t really care to plan for it- that was a little silly with hindsight- the fear was just getting to the other side of it.

We agreed that once the labour ward was ready, I’d move there and check again, but I’d allow to start with the ABM. I was moved over at around 3.30, settled in, and by 5pm the attempt to break my waters began.

Big crochet hook. Little crochet hook. A lot of ferreting around. Baby had his hand up by his head and actually plugged the hole with his finger. You couldn’t make that up. I felt quite violently assaulted by this point. But then the dam was released by the little Dutch boy and suddenly I was sitting atop a patchwork of conti sheets on my birthing ball in paper pants, expecting to endure this indignity probably at least overnight.

Now, I’d gone in planned for things to take some time. Books, magazines. Mid way through an article about an ex Big Brother contestants 50 sausage a day habit I had my first contraction. And then another 3 minutes later. I suspected at this point my plan was a little off. 
By 7pm I’d texted my mum. In the half an hour she took to arrive I was chugging on gas and air and climbing the bed. From this point on any lucidity or control I had on the situation was gone. I’d had a brief chat about pethidine but it just seemed as though things were moving too quickly and in the blistering white heat of pain I couldn’t make the call. This was a mistake. The pain only intensified and I felt completely ripped apart.

This, combined with the fear I carried, meant that apart from the transition period where I felt my mind explode with the other world, I was mean and sweary. The air was blue. I called the midwife a f*cking c*nt (I’m not entirely sure why). I told them my baby was dying when the monitors fell off as I crawled round the bed, jackknifing. The monitors screaming through the fog.

“Get off my f*cking nightie!!!” As they attempted to salvage my dignity.

It was all too fast. Apart from the pushing. Being out of control of my pain meant ultimately I was resisting pushing effectively. That and he has quite a big head. An hour in, I needed to swear less and accept help. In the end that help was a catheter and a foot on each midwife apiece’s hip. 

The bowling ball of fire quickly appeared at the foot of the bed, screaming. I’ve never really understood how a fast labour could be shocking, but now, I know. I was incredulous that in 5 hours I’d gone from ‘ooh is that a contraction?’ to watching this little fish at the foot of the bed flip and flounder.

As I lay back with him in my eyes, taking in his hot little form, the room came swimming back to me. I was being stitched and yet suddenly it was painless. I apologised to all, profusely. They were all remarkably lovely if not a little battle scarred.

Wolf and I had earlier known which name was coming up trumps in our shortlist, but decided to just take one last chance, see if it sat right whilst gazing at this baby. This baby we barely dared to believe would ever be a reality. And it was. Barnaby Summers had arrived in an untimely timely fashion.