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 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.

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.


 

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.

Vote For Me?

From the minute you wee on that stick, or multiple sticks, in that heart pounding moment you wonder who or what is going to happen to you. You, as the individual, is suddenly growing another. Your body, your mind, your relationships, your identity. You know for sure that change is a coming.

No matter what happens, having both experiences, you are changed in those three minutes.

Susie Mesure has written an article this week which feels like a ham fisted attempt to neatly divide mothers into tranches, and a review of what being a “mummy blogger” seems to mean to her. To be honest, I struggled to find a point, and mostly it boiled my p*ss. I found it patronising and divisive, praying on those insecurities we feel at the moment we lose our pelvic floor and our sanity.

More than that, between alpha, tiger, smug and fml mums, there is no mention of the children. That they who shape us are less than our reactions. What’s that expression? Be kind for everyone is fighting a battle you can’t see.

But I’m thankful of it as a platform. A moment to consider what I share and portray, what I tidy the edges on, filter and gloss. I’ve been nominated for this mumsnet award you see, for Best Campaigner, and whilst I am honoured and flattered, I wondered how I ended up there. In that camp, with amazing women who campaign fearlessly and doggedly. I probably should have tried to be funnier. What I don’t want is for Best Campaigner to feel like shorthand for Really Sad Story in our instance.

One of the things that I’m having to come to terms with now, after RD’s death, is that I’m no longer a mother of a disabled child. A parent carer as I so often would have to fill in on forms. That now, in a snapshot, the years of day to day care; nearly 6 years of broken nights, tube feeds, medicine measuring, nappy changes, therapies, have gone. It was and is a badge of pride, all that my beautiful son taught me. So now my identity feels so altered. And we bought a puppy so that we had more broken sleep and conversations about poo.

It’s made me realise what I’ve campaigned for. And will continue to. Disability and all I thought I knew petrified me when pregnant. When I realised that I would have 100% responsibility of the child inside of me; but what if that was lifelong and unending? There was no reason to think it would happen to me, to us. But it did, and I will be forever grateful for all it taught me. Patience, compassion and some serious black humour.

I believe it taught me how to deal with baby loss. In an effort to not sound mawkish, I will just say that being grateful for life was and is where I try and find my way back to from the gaping hole of loss. There is a type of grief that you experience as you move from the loss of What You Hope Your Child Will Be to acceptance of the diversity from that. It isn’t comparable to the grief I feel now, but certainly touched the same places of heart and mind.

So, I will continue to campaign the concept that whatever happens, it will be alright. That your universe can be knocked off its hinges, but you will find your way back to you. Reach out, learn, support and all will come full circle. And to wear your favourite lipstick. Because right now, it’s what I most need to tell myself, sitting in RD’s room. In clothes that are only a hairs breadth different from pyjamas, holding his clothes to my damp cheeks. That I’ll one day find a way back.

Whilst writing publicly isn’t all heartfelt altruism, I do really hope that by sharing, by writing out loud how this is and how it will continue, will help others.

My life, changed but not defined by grief.  Vote for me?

3 – .6 = 2.4?

They say things happen in threes. I’m not sure why. I’m fairly sure when things go tits up I stop being able to count. Because clusterf*cks generally contain a billion issues going awry. Maybe if I took the time I’d realise that the minutiae break down to a multiple of three. I think it’s supposed to give you hope that if three shit things happen in a row that that’s you done. Just don’t cut your nails on a Sunday, or put new shoes on the table again.

But really there were three things. Three things that as I sat there on Mothering Sunday I tried to hold back the rising cold of sadness. Two babies gone, and one child’s health now showing signs of rapid decline. Those three things were the lynch pins. The crashed car, the missed train, the diverted flight just another trio of the week. A late school taxi, an officious security man on baggage check and the spillage of shower gel over the contents of said baggage another. Spirals within spirals.

I think only Pete Tong could understand just how bad it all got. Well if he then got the lurgy. Because I’m now also in my sick bed. I’m sure I could also group that with another two things but I’ve got major brain fog. 

Sat in the hospital playroom on Sunday awaiting yet another set of blood tests for RD I thought back to before I was a mother. The naivety. Not just that this job would be hard and relentless. I mean, I could guess at that. Or how many people would call me Mum even though I’m pretty sure I didn’t grow medical professionals in my womb. But just how left of centre it could go. I wanted, I still in lots of ways, want three children. And I’ve created four, we’ve created four. 2 + 2. And now one is in danger. 

We’ve known from 8 weeks that RD’s kidneys would go at some point. But as goalposts moved, and we were graced with far longer than anyone anticipated, you can’t help but wonder if actually it was true. And we’ve been lucky that whilst the extent of his disabilities unfurled, his kidney function was relatively static. But that luck has meant this has left us breathless. Trying to firefight his sky high urea. Filling in forms that ask me how much I drink a week. Knowing that from now on either the phone could ring with the news that a kidney is ready. Or in six months we’ll know whether one of mine is a good enough match.

I remember though that we are at this point because we have fought, and will continue to fight for RD. In the face of suggestions of palliative dialysis. Of firefighting until his time was up. Questions as to what makes up a quality of life. Living, that’s what. And that makes me proud to be the mother I am. A grafter and a fighter. A painter on of a lipstick smile.

  

Dirty Little Secret

Relishing the early weeks when only you and your partner know your special secret.

                                                                                                                                    http://www.babycentre.co.uk

I’m not really supposed to talk about this. Not the done thing is it? For seven days I’ve known my secret has altered, changed, ended. And it could forever stay that way, a secret shared between loved ones. I’ve worked, I’ve mothered, I have continued because I knew of no other option.

I’ve answered the question “So, what number pregnancy is this?”. “Four.” 

“And how many children do you have?”. “Two.”

So now the gap widens, and yet, who can I share this with? 

My first dating scan, I knew what I should see. 10 weeks, a little alien punching and fighting. A heartbeat, so strong and fast. From the outside I looked 10 weeks pregnant. But from the inside, silence. Stillness. Not the right size. Again.

In my head, placing the pain on a sliding scale. 

Being told your living child will most likely die. WORST.

Finding you’ve lost a baby at 20 weeks. NOT AS BAD.

Finding you’ve lost a baby at 10 weeks. BETTER?

Stupid fucking sliding scale. It all fucking hurts. Trying to comprehend the pattern. Annoyed by my optimism this time. No rainbow, no pot of gold. Just a carrier bag full of rotten potatoes. Then an appointment for 10 days time, to decide what to do. Just in case, but no one is in any doubt. I ask the room for what I should do with myself for 10 days, in this isolated place. I imagine running away. I really think that through. I don’t want my children to absorb any of this pain. What do I tell people? Will my false smile slip?

But no one knows. It’s up to me. Fabulous.

And more yet, they think they know why this is happening. To all of those four pregnancies I’ve had. A name of something written on paper. In a marvellous irony, it is illegible. So I ask her to sound it out. Commit it to memory, unaware that it will bring some peace.

We hold hands on the way back to the car, struggling to find words. But all I can ask is what can I do? What will I do? 10 weeks disappears. 10 days feels like an eternity.

Seven days in and my body is making its own call. The process has begun, with equal measures of sadness and relief. So far, no intervention necessary. Not such a special secret.