We Could Be Heroes?

This is something I’ve wanted to write about, but will admit to being scared. I’m not scared about expressing my opinions or my words, but because of the exposure to the hungry beast that is social and traditional media. Sitting, ready to pounce with vitriol. Opinions begets opinions. I have watched from the sidelines as more people have said “I can’t imagine what the parents are going through” or starting comment with “if it were me.”

Well, I can imagine. And I know what we decided in our unique case. That’s the crux here: conjecture is based on evidence presented and comparisons to other unique cases. Yet no two incidents are the same: there may be similarities in conditions or questions over treatment, but ultimately we humans are individuals and this is so prurient in the case of rare disease.

So why write this? This post is in solidarity. In having experience, so I write this to post into the ether with the hope it may bring some comfort.

When RD was tiny, when he just wouldn’t grow, wouldn’t tolerate feeds, and every step forward was met with one back, I fought to find hope. Strength. Optimism. It was clear that he was in pain: for all sub 3 pounds of him he could silence beeping machines and alarms with scream after scream. He would vomit across the room. 

I was petrified. My first born son was alien to any other baby I’d met. But every fibre of my being, every synapse of my body tingled with love for him. I willed him to improve, in spite of mounting evidence of poor prognosis. Yet, I was also scared for him to live if the pain would continue. 

The evening of Boxing Day 2010, we arrived on the neonatal unit. I scooped RD up from his incubator, he let out an ear piercing scream and covered me in vomit. The sobs heaved from within me. We were living a life I could have never imagined, I didn’t want it anymore. I couldn’t grip onto the traces of hope and optimism. So I asked RD to show me. Show me he could do this. I whispered into his tiny neck, show me.

For reasons beyond my understanding, he did show me. It wasn’t down to different medical intervention. In a month he’d tolerated feeds and put on weight. The treatment for his kidneys seemed to have worked unlike any other case they’d seen and therefore one prognosis- that he would need albumin infusions multiple times a week- proved incorrect. The doctors were wrong.

RD left the neonatal unit for home after four months. Again, we had been told that this was unlikely. In that time, in the endless stretches of minutes sat at his incubator and then cot side, I had run every emotion. I had crested peaks of elation at improvement, battled despair when it felt like things were unable to get worse, felt gratitude beyond compare and the last one, anger. Such anger, at how unfair this all was for RD. For us. And every time someone got it wrong, I channelled that latent, useless anger at them. Doctors, nurses, professionals. 

I couldn’t always see that they were just other humans, trying to put together their best evidence and experience and forge a way forward. Hospitals are fraught, noisy and busy. You feel as though you are the only case that should matter, blocking out the hundreds of insular crises happening around you. That’s the only way to get through. To survive as the bystanders to the one battling for their life.

In his five, nearly six years, we had with RD he fought against medical prognosis but our fears about lifelong disabilities became actualised. I had many conversations where I had to reel off all the list of things RD he could do, that he loved, so evident was it all the things he couldn’t. In that time we truly came to understand what quality of life looked like. RD’s label of life limited never left him though. In spite of appearances, his condition was deteriorating.

When we tried renal replacement therapy, and it consistently failed, it took me right back to the start of his life. Constant hospitalisations, where he was utterly miserable. At first I fought off any suggestions that the kindest thing may not be to continue. Anything else felt too awful to contemplate. 

When we really looked at the picture in front of us though, I tried to think how RD was understanding this, being that his understanding was different to ours. We had come to learn that whilst RD could clearly react to discomfort and pain, or complete happiness, he couldn’t anticipate either. He reacted to what he was presented with at that very moment in time.

After another fraught night in a side room with RD, where he couldn’t be calmed from the pain he didn’t understand, I asked him again. But this time I realised he’d already shown me. The one thing I know though is it wasn’t giving up on him, it wasn’t letting go.

For us, RD’s lifetime was too short. I would still give everything to have him back, but only if I knew he would be happy. Truly happy, as he was when we stopped invasive treatment. I will live everyday missing him.

But for RD his lifetime was just as long as it lasted, and he left us with the balance of happiness versus discomfort swinging heavily towards happiness. He knew he was loved unconditionally. His short years were full for him.

I don’t know what I’d do in any other instance. I do know how it feels to fight, and I also know how it feels to gracefully step down. Both feel just as heroic.

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.



Running Out of Time

Saturday: mid afternoon. Something crunched down into my pelvis, the pressure makes me gasp. I spend the afternoon feeling sick and yet my ribs have stopped hurting. I get home that evening and check through the hospital bag again.

Sunday through Thursday: same as Saturday on and off. Sometimes a lightening bolt feels like it fires down the inside of my thighs, making me stop, hunch. Yet, nothing.

Thursday: 3am. I phone the midwife. I say I feel crazy, but after 2 hours of being kept awake by what feels like a burrowing bunny trying to get out my back end, I felt I should call in a change of movements. An increase.

Thursday: 10am. Preparation for labour reflexology with the wonderful Deanna. Apparently my feet give away my week so far.

Friday: 4am. I wake up in a cold sweat, drenched. My tummy feels still and rock hard. I prod the edges. Pace about. But that’s it: I know he’s gone. My pulse racing in my ears and the tinge of sick in my mouth, I wake wolf and phone the midwife. Then push, pound, turn. He’s back. I cry and cry in relief.

Friday: 7am. A wobbly, sleep smelling DD crashes into her bedroom door and flails along the corridor before climbing over wolf and snuggling down between us in bed, her little heart going ten to the dozen. She snuffles in for a cuddle. A foot prods her from inside my tummy. She looks up and says “ow” with a wry smile.

I tell her we have to get up and get ready this morning- no lazy games of Marshall Pup hiding under the covers that have marked the rest of her Easter holidays. She asks why?

I make a mistake, I tell her that she has to go to Grandma and Grandpa’s this morning as Mummy and Daddy have to go to the hospital for an appointment about the baby. I only realise my mistake too late, when her behaviour becomes uncooperative and wild. I’ve not said before that we have to go to the hospital for appointments for the baby before. And I know for her, hospitals are sad places. Hospitals don’t make people better.

Friday: 8am. A brief interlude in the general stroppiness as we all get into the car, and Scatman John comes on the radio. In car dance party on the way to Grandma and Grandpa’s. All of us relax a little until drop off. Dog and child burst out of car in mass of limbs and barking. Quick hellos and goodbyes.

Friday: 8.30am. Arrive at hospital. Find I’m booked into the wrong doctor’s clinic. Have a mini strop in the thankfully deserted waiting room. All gets sorted, I get hooked up to the CTG monitors. My heart rate and the baby’s are racing. I explain the movements situation. All becomes calmer as I’m reassured.

Friday: 9.30am. I see my consultant. She is lovely, we talk about the last week. My mental state and anxiety. The baby. We agree on a plan. But first to see what’s going on down there. Knees up, deep breath, a pain that reaches from behind my knees to my ears. Feels like she’s turning a pretty big key in there. Out, down, relax. 2cm dilated, soft and short. 

It’s what I needed to know, to hear. That my body was preparing. That things maybe, just maybe, may resemble something somewhere near normal.

However, it brings up a problem. Wolf and DD are due to head to London later in the day, in preparation for him running the London Marathon on Sunday. I could go into labour any time now, which I know Wolf wants to be present for- but before he meets his new son, I know he has to complete this for his first son.

It’s not like the meeting of our full term due date with the date of the marathon are in any way a surprise. It’s just we didn’t feel like we could invest in either, and in the midst of grief, Wolf has found the solitude and fresh air a chance to breathe out and take time to be with his memories and thoughts.

I know this, because in RDs lifetime, I used running as a similar means to an end. When your mind feels clogged and chewed up, just concentrating on the rhythmic pound of your feet on ground and clocking up miles shakes sense back into them. I watch him go out in envy, and attempt something similar whilst waddling and watching Eric cavort about the moors.

But clearly, from Friday’s example, it’s not enough. I simultaneously long for my own body back and the chance for that freedom but I don’t want to beat Wolf to the finish line.

So, who knows, on Sunday if either of us will feel a victor. I certainly hope we’re not comparing blisters and grazes next week. In the next few weeks as the dust settles from both, and we emerge with two medals of victory- albeit one that’s more likely to cry and poop- who knows where we’ll set our goals.


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AGM

We’re in it now. A year since RD started dialysis. I have been for a few weeks.

I’m not sure why, but so far since he died I have only really been living in memories that fall within that year. I peek back further, but they’ve sort of mashed themselves into a pre one year ago burger. His birth tumbled into neonatal squashed into coming home, pressed between the years of raising two tiny humans and finally finding stability until it All Changed.

You could say it changed when we lost Tiny. Her little alien form never getting past halfway. Or then the sibling that has no doubt been washed to sea, with the fairground goldfish. But because they remained fairly abstract they were rudely quashed by watching RD battle and lose his life. At some point I think my bungee will allow me to delve back further, but for now, I live in my memories of a year ago. It shunts along with me every day.

The last few weeks have really stalled. DD has hit peak tiredness at end of term, combined with an inability to express her fears as to exactly why Mummy looks like she’s smuggling a bistro set under her clothes. She doesn’t want to feel him kick anymore. She’s stopped talking about her baby, Daisy. The last conversation she told me her baby would be tiny and need a wheelchair. Yep. I may have lingered slightly too long with my head stuck in the fridge before turning round to look at her.


So one day lasts for what feels like two. I find myself snapping and shouting at her more than I want. She responds in kind. Wolf is really, really enjoying his marathon training.

It feels like I’m getting to a destination where suddenly all I’ve held in for a year will be released somehow. But my heart is so scared of that, and keeps reminding me at inopportune times, that this baby could die too. And I’ll still be on hold, waiting for release.

I have lived a year where I held in my fears and pushed and forged ahead to get RD towards transplant. A year where I pushed and forged to give him the best of everything whilst simultaneously quieting a fear that he could die suddenly.

I have lived through being told he would have weeks of left of life but believing that actually, maybe deep down somewhere they were wrong and willing him to live, just a little longer.

I didn’t get a chance to surface before carrying this life. And somewhere, on that day, it changed on a switchblade and despite gathering evidence that all will be well with this baby, I carry the weight of the fear that he will die.

Both are just beliefs. My head knows the circumstantial evidence is telling me these beliefs are wrong, but my battered and bruised heart is bracing itself for a fall.

Just because you feel it,

Doesn’t mean it’s there.

Radiohead, There There


RD, one year ago.