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.

Signposts, Milestones and Millstones.

It’s been a big ol’ week here. The start of October may have just as well have come on a Mardi Gras float surrounded by a brass marching band, with Chinese acrobats leaping about beside it, and fireworks erupting all around. And that’s when I’m feeling all upbeat. Sometimes it’s more flotilla than float, with guns and cannons armed and ready, primed to go off. Whatever, it’s been making quite the rumble on the horizon for some time. Because, if you’ve been paying attention, you’ll know my boy was born at the beginning of October. So that means a birthday celebration is due. What you won’t know is that in the time he has walked rocked back and forward on his back with the occasional useful roll, is that it also signals the beginning of a period of general unwellness and malaise, not to be lifted until the birds tweet again. I’ve said it before, but Rufus only has done winters of discontent so far. I know it’s only been two years, but I’ve been eyeing the calendar with general suspicion and fear.

This time round though we also have some fresh contenders in the ring. Bun D, who if we get to past this week reaches the ripe old age of 36 weeks. If you’ve ever had a premature baby, and encountered the world of ‘pre weeks’, you’ll know that past this point the baby (unless something is alarmingly, obviously Not As It Should Be) doesn’t have to check in at Hotel SCBU. And baby is still thriving. It’s making parts of me ache that I never knew could ache. And having some rather unpleasant effects on my digestive system. And generally making every day life a little more breathless. AND distancing me from my computer screen that as I type this elbows keep getting pushed aside and I’m having to squint at the screen. But I, we, couldn’t be happier.

So that means I get to start maternity leave proper. I’ve been able to handover. To leave in a happy place. But it’s mixed, because returning to work has been so beneficial to all of us. Financially, naturally, but also I got a taste of Me back. Not of my back, yuck, but I wasn’t just Mrs D (with all its mispronunciations). I wasn’t just Rufus’s Mummy. I was, well, someone. The person that I was before the bottom fell out (promise I’m still not talking about the dodgy side effects of being heavily pregnant). And Rufus has loved the interaction with others. And with Wolf. And to know now that Wolf is able to care for him just as well as me, or most of the time better than me, has allowed me to stop worrying about having Bun D so much. Equal cogs in the machine we are, us Ds. And it allowed me to write this blog, the distance from the everyday. The renewed energy of Who I Am.

My boy turning Two though, that’s been a milestone sitting in the pit of my stomach for sometime. A millstone to wear around my neck. You see, there’s a golden period of time where things seem to be on track, and then we seemed to have off roaded. On a dirt track mired with potholes, where as you go down it, it becomes more and more evident that he Rufus won’t ‘just catch up’. He’s made some amazing progress, but he’s left the starting blocks where it’s just too young to tell. At two, brows furrow, questions become more in depth, more people are brought on board. Our car is getting somewhat full, looks like we may need to hire a roof box at the very least. Only today I had to swerve to avoid a “can he not talk?” followed by a “what’s wrong with him?”. But she gave him a bumper sticker for being beautiful, so we trucked on.

I’ve been ruminating the supposed five stages of grief (and living them consistently since that fateful October two years previous), and how they mark our journey. Gulp, I’ve said it. That having our first child has been somewhat of a grieving process. Our Hopes and Aspirations had to depart, and in their wake Reality has been a bitter pill. The Kubler-Ross model includes the following fistful of emotions; Denial, Anger, Bargaining, Depression and Acceptance. Sometimes that last one is so good, you think you’re not still in this turmoil. That the future is bright, and orange or something.

Whilst looking for answers as to how to ride this journey, I thought to read up on famous figures that may have had something similar occur, and therefore may have some pearls of wisdom that they’ve scattered amongst the masses. Some helpful brain farts. So, naturally, David Cameron came to mind, chief bestower of brain farts. Please, please, don’t misunderstand me. I know not of the man personally, or his family and appreciate that his job is tough. Or really, really easy if you think about it. I wouldn’t have the political nounce to do it. Or write The Thick Of It (props and thankyou Armando). But this little tidbit struck me from BBC News’s reporting of the unbelievably saddening death of their disabled son Ivan;

“The news hits you like a freight train.

“You are depressed for a while because you are grieving for the difference between your hopes and the reality. But then you get over that, because he’s wonderful.”  BBC News, Wednesday 25th February 2009

Right, get over that. Will do David, thanks. Blog knows how I’ve waxed lyrical in the flesh and in text as to how wonderful I think our boy is. Sounds to me though like David there has driven a straight road starting at Anger (A of course) and ending in Acceptance, or I suppose Belief (B, natch). Good for him. Or for the reportage soundbite. Because my grief signposts exist somewhere near Milton Keynes. Or for the Scots, Cumbernauld. If you’ve ever been to either of these places, you’ll know that they consist of a myriad of utterly confusing roundabouts. I’ll be chugging along, either happily in Denial (so desperate to make really bad Egyptian DeNile pun here. Must. Resist) or you know, making inroads to Acceptance, and bang! A wrong turn, and I’m on a steep downhill slope to Anger. I fly past Jealousy- nobody warned me about that. Kubler Ross missed that out her guidebook didn’t she? Then a professional in a high visibility jacket motions me into Little Bargaining, after which I have to stop off at the pub in Depression. Drown my sorrows. Not safe to get back behind the wheel for a while.

Sometimes I feel like I’m doing this at top speed. Racing round before the shops shut. News on the car radio putting me in a batspin panic. Other times I can well see what’s coming. That’s why Rufus’s birthday float was quite clearly marked, and I thought I knew which route I’d take to get there. Truth is, now it’s in the rear view mirror I’m not sure where I’m going. Oddly it brought Relief. Respite. I suppose it sort of put me square in Acceptance for a bit. I might take a step outside and admire the beauty spot, like David says. It even allowed me to ignore the regular gesticulating into Depression that was the short development review this morning. I blinked at it, knew it could take me there if I listened too hard. But what’s the point? I could taste the flicker of smoke from yesterday’s birthday candles. I could remember my boy’s face when people had so carefully considered his likes when buying him presents, not just what was age appropriate. And we have this new passenger, Bun D. I’ve checked their seatbelt lots of times. I’ll keep doing it, I’m not so sure they’re tied in tight enough. But it’s nice to have someone else on board, even if we’ll more than likely need a trailer rather than just a roof box now.

And as for a winter of discontent? Well, there’s been some starting snuffles and some teething angst. But so far, well, whilst I won’t be surprised to be swapping my Mum hat for one of those old paper confections that my Mum in her days as a junior nurse used to have to try and balance on her head with varying degrees of kirby grip scaffolding, I’ve got something else Kubler-Ross forgot. I’ve bumped her five to seven, because I’ve got Hope. Well, probably more than a fair share of Denial. Anyone want to join us at our Lover’s Leap? Here’s the boy enjoying being a Big Two year old. There was a time when this wasn’t on the horizon, or on the map. Or on the centile charts.

Is that really you Timmy?!

 

It is, it is!! Finally someone who talks my language!

Friday I’m in Love

Whereas previously I’ve apologised for my use of song titles in posts, ashamed at the utter crapness of the song, and then appropriating it for my means, I’m glad I get to use this one. It also feels a little more than appropriate in light of the fact that any attempt to put make up on my tired, slightly (who am I kidding?) bloated and increasingly fat face and my new appreciation of faded black jersey clothing to cover the body it wobbles atop, lends a more than uncanny resemblance to the current Robert Smith. Oh, and the hair…

Like looking into a mirror.

I’ve just been aware that my last few posts have felt a little bleak, as I sat perched on my sofa, watching my boy carefully, assessing his unusual behaviours, trying to calculate what they mean, what they will mean, I was getting a bit meta. I was bored of myself. When I got up today, I felt pants. Achy, snot ridden, exhausted. But this is my day with the boy and the Wolf, and we’ve had an arduous few weeks- ships passing in the night doesn’t cover it given my propensity to fall asleep like clockwork at 10pm. Wolf’s masters degree completed, myself having helped organise and hold an excellent hen party for the most deserving hen oor Josie, working, hospital appointments, the minutae of daily living meant we weren’t a family unit, we were family units.

In the midst of it all ‘That Day’ came and went. We knew when it was, we had a scan booked, but both of us gave it a shifty look and tried our best to not mention it. See miniest D has been operating as it’s own unit within our family now for some weeks- shape shifting my enlarged belly into all manner of rhombus like shapes and generally keeping me awake when number one child has eventually decided to sleep again… The pair of them acting like a tag team on my sleep pattern. We’ve been through some very scary testing, got the best results possible. No real clarity or resolve, but at least from where we stand we could give them a cautious high five- amniocentesis showed low levels of protein, baby still growing well, no amniotic fluid issues, and someone is quite clearly serving this child a healthy dose of weetabix everyday. But still, we needed to get past That Day. We needed to know this one was going to rest up where it belongs for now, comfortable and happy in its jacuzzi bath.

I’ve been wondering whether to tell anyone this, but because I personally don’t believe there should be any kind of stigma around it, I’m letting you know the Ds have had some counselling recently too. I reached out in the midst of our crises and held my hand up for help, held our collective hands. Some very clever blogger wrote that Life was Bigger than Us. Oh right, that was me. Life was getting heavy, heavier, I was scared of it and we needed some help to prop up the edges of the canopy as it felt like it was closing in around us. I wanted to keep the gross of the smiles real, just keep the fake ones for bad jokes (the majority of which I make myself) It just so happened that we had a session on That Day. Despite my reservation it couldn’t have come at a better time. Wolf and I had to answer questions as each other about each other (what did I say about getting a bit meta?) NB; there were no false beards involved. The outcome was that we realised we get the most joy in our lives within our family. The three, soon to be four of us, in our bubble. There are of course a multitude of other lovely participants and endeavours in our lives that make us happy. But in our home, wherever we make it, we’re stupidly happy. Despite the shit (literally and metaphorically)

So, to get to the point Friday. Why Fridays? Because I’m not at work? A bit. Because it’s our bubble day? Mostly. Because Wolf and I got married on a Friday? Well, yes. The overriding because is Because miniest D turns another week older on Fridays. And we’ve passed That Day. So that means we’re on bonus time every Friday from now on until, according to pregnancy yoga, I will breathe my way through my journey to meeting my baby. Hmm, dubious. But if I get to hold that baby for cuddles as soon as it arrives, unburdened by machinery and fear, I don’t care if I can’t walk for months. And also, family tradition means that Friday is fish and chips night, and what’s not to love about that?

It also just happens that this Friday, our elf managed to stand for an hour in his standing frame. No meltdowns. Just giggles and play. You’d also like our bubble I think, but I am more than a little biased. And this bias means I can’t post a blog without some piece of Rufus eye candy at the end. It’s only going to get worse when this miniest one gets towel dried off, so let’s have another one of just the boy.

I can quite clearly see two of me already, no need for another!

My Hump, My Hump, My Lovely Baby Bump

Sod it, I thought. Keep shelving the ‘big post project plan’ for today again, because I walked past the mirror and thought chuffing nora. I’m massive. Plus this one’s a frisky little thing, and has barely let me think/do of much else today, despite the work mountain threatening to require a pick axe and crampons if left in it’s current state. Then the boy comes home, requires IMMEDIATE attention to his various complex mundane needs. He’s always so exhausted after a day at the childminders that we have a half hour slot to attend to his wants before histrionics. So more sod its later, some medicinal chocolate having being sent for and returned, I thought I’d acknowledge the incubus.

I know I’m pregnant. God knows Wolf knows I’m pregnant with my demands for various pickled items and my threats to pickle some of his items. But there’s a large dollop of denial sitting atop this baking bun. Rufus may have to stop being the medical mystery, as the conception of baby B may outrank him. It must have been conceived somewhere in a period of time that we actually referred to as our winter of discontent. A permanently snuffly, gripey, teething, screaming baby that thought sleep was so 2011. Me suffering from some belated post natal depression. All in all, we weren’t feeling altogether ‘cuddly’.

The magical words from wolf’s mouth on a rare night out about a week before we knew. I was complaining of lethargy and yuckiness not felt since Rufus was a mere poppy seed. Quote “you better not be fucking pregnant”. I downed my pint to get rid of the nausea. I promise to remove this bit from the post when baby B is old enough to read.

We were due to sign on our new house that day. I was arranging my return to work. I suspected drinking wasn’t the right thing to do, the feeling hadn’t abated. A minute after my period was late I took the test. With Rufus, this took some several days post to confirm that I didn’t have a virus. Not this time, ping! Right so this isn’t just moving house anxiety, this is another D. Then I had to think how I would tell wolf. I knew like me he’d be pleased really, once the post traumatic stress had worn off.

My sister came out with a corker during her current pregnancy. “Your first is all romantic and new, exciting. The second time round, it’s all business”. And she’s right. This was a surprise, we hadn’t invested time and emotion into it. We’d discussed more children, but it was in the same category as eventually owning property. Not anytime soon. We weren’t recovered, we aren’t fully recovered from the first time round. So we know, but until we know things may be a bit more straightforward I don’t think we’ll ever believe.

That’s why I caught myself today, I realised this really isn’t like last time. Not that I knew or would have believed any bad news last time until there was nothing else. I didn’t want to believe. It wasn’t from a massive well of positivity, it was from a lake of naivety. Now I know too much. Every scan and obstetrician appointment is met with a scrutiny over their analysis they’ve not received since their medical school exams, sorry that is a bit of an over exaggeration of the quality of my questions, since the last neurotic mother with a previous difficult encounter aims at them.

Me pushing my bump forward at around 29 weeks with Rufus

I now also realise what proper kicks feel like. And acrobatics. A movement strong enough to cause involuntary movement (and other movements!) of its incubator. And I now see I just wasn’t big enough last time. Unless I’d been able to give some lower organs on loan somewhere, there was no way I was just ‘carrying it that way’. And maybe I’d just sod it, and let myself give a little nod to baby B. I’ve talked of you, in passing, referred to you making me fat. But here’s a hat tip. And that lovely protective rub of my buddha belly that pregnant women do without thinking.

But I also want it to know it doesn’t have to be our great white hope. Baby, you can be just you. If we need to cope again, we’ll do our upmost not to let either of you down, just embarrass you when you’re old enough. I’m going to worry, and I’ll shed a lot of tears no matter your arrival or path through this world. And I’ll google some crap just for you too. Maybe just don’t cry as much as your brother?!

Today at 20+3 weeks. Note the change in attire, and make up from my last pregnancy however. Thanks son!

The Diagnoses, or Doctors; A Comedy of Errors

The scene has been set, a child born too early and too small, that ‘looks different’. He doesn’t tolerate feeds, and gets moved hospital- the scene is now larger, more modern and high tech, somewhere where they can view the main act with more spectators. I really don’t want to make this too much of a chronological blog about Rufus’s start in life, I’d hate for it to define him. And it would make for dull reading: day one, makes progress, day two, makes some more progress, day three, goes backwards. It’s a fairly common baby born early story, with the most common ending that they come home about when they were supposed to arrive into the world. We didn’t get that fairytale.

In that first week, bleary and tear stained with the enormity of, well, everything I don’t remember as much. I remember they were very worried about me predominantly, and reading back on a small journal I started then, there was some justice in that thinking. I was cliched in that my lowest point came 48 hours post birth, where I think I took to actually pacing. And I remember being sat in my hospital room with the consultant explaining what they were looking for in Rufus and only able to utter that I was in pain from my heart breaking. Melodramatic I know, and I’m embarrassed by my British sensibility to having been so outré, but it was honestly all I could articulate.

At first there were these minor chromosome abnormalities, which most doctors cleverly shrouded in the mystery of them being too vast, not speaking the names of what they were looking into. It took the ignorance of one doctor, busy and flustered by coping with a barrage of questioning and having to answer in not his native tongue (the same one as had greeted us in our first meeting) to throw names into the fire. Prader Willi. Cri du Chat. Now, having worked in respite care for children with disabilities one summer as a teenager, and having lived with a best friend who had worked at a pottery in a special needs school, these terms were not new to me. Plus, I’d have gone away and googled them.

Up until then, the vagueness was comforting, I didn’t really get that they were looking at potential disabilities. Suddenly, we had moved location, the scene had changed. And it was vast and bewildering. Genetics had entered stage left. My preconceptions of what it would be like to be a parent died tragically. I had, and still have some grieving to do here.

In a moment of clarity before Rufus moved hospital, wolf and I sat in a counselling room to discuss where we were at. The consultant visibly embarrassed by his colleague’s gaff, was explaining that they have to look at everything that strikes them as unusual, things that over time may or may not prove to be anything. In my own words, I heard myself say ‘so diagnosis may be beneficial, but only really time will determine a child’s path in life?’. Now if only the smug contentment that I found in figuring that out had seen me through Rufus’s entire stay in hospital, and on the odd tooth grinding worry day I have now. It may have stopped me from asking a very senior, kind and amazing consultant to stifle a snigger when I asked him if Rufus was an Albino Dwarf. That had a Puerto Rican form of kidney disease. What did I say about googling?!

In the new hospital, Rufus was seen by a team of geneticists who agreed that he actually looked a lot like me, and they would continue to run some early testing but they felt they were highly unlikely. See, time. And that was just two weeks. It looked like we’d get our fairytale. He was doing well, digestive problems aside, he was still putting on weight. If we didn’t do them physically, there were plenty of mental high fives between the wolf and I.

But then time bit us on the arse. Weeks started to blend, Rufus was continually doing his best to be a long term patient. He puked. Everything. Coffee ground aspirates. IV feeding again. His due date was creeping closer, and the weight gain had lost momentum. He’d gone odd, unresponsive or screaming all the time. Weird pockets of swelling. Another diagnosis, pyloric stenosis. Just a little operation, but he barely weighed 4 lbs. A lot of reviews of his abdominal scans, decisions not to operate. It just wasn’t adding up. Odd blood results. Today’s ward round- Rufus D, failing to thrive. We cuddled him daily, massaged his stiff joints and swollen feet, loved him endlessly. How was he failing? Was there about to be a dramatic denouement?

I remember innocently eating a sandwich in the parent’s living room, a week before his due date. There was some chatter out in the hallway, I recognised the surgeon from having him reviewed and declined to do the pyloric stenosis surgery. His words; ‘I can’t believe they’ve thought this was a digestive issue, its quite clearly his kidneys.’ I knew. I got up and blindly barged into the conversation, not caring for the usual social conventions. Are you talking about my son? No name. The surgeon did not answer. His colleague, who I had never met before, no, of course not. They walk away, quickly. They’ve been caught out. We all know it. Moment of self satisfaction, ah ha, idiots! But shit, I’m right.

Two days later came the diagnosis. The one they were sure of, they knew how it was going to play out, when Rufus’s curtains would close. Congenital nephrotic syndrome, most likely the Finnish type. Hope was evaporating, he was very, very sick. But that’s another post: Medicine, the art form not to be confused as a science. Especially by doctors.

Rufus at term. Small in stature, massive amount of determination.

The First Time Ever I Saw Your Face…

To get to where we are now, I’ve got to go back to the start. You know, to coin a phrase, to know where you’re going you’ve got to know where you’re coming from. A lot of this has taken nearly two years to write because only now it’s become history, something that I’m not spending every waking minute trying to understand the medical jargon. It’s been googled, settled in my mind, been revisited and chewed over. Only then can I allow myself to openly talk about it. It’s not as painful, sometimes it’s funny, ridiculous. It’s not going to disappear, and I open that can of worms frequently, cry and try to move on.

So Rufus had arrived, I was on the ward. On the way we’d passed the surgeon, how are you Mrs D?, shocked. We got him out just in time. Just in time? For what? It doesn’t feel like the right time. Brave face, if I act fine everyone else won’t panic. Wolf will be able to go home and sleep. But why do I keep being called Mrs D? Can nobody see that I’m a very frightened 30 year old girl?

My ‘brave’ face.

Try to sleep Mrs D, it’s been a long and stressful day. I will try, but I’m on a ward with two other women in the early stages of labour and one fighting to go home. She didn’t want to leave her premature baby, but english wasn’t her first language and she was scared. She needed to go home where she would be understood. I’m itchy from the morphine, it’s my first ever night in hospital, I have anti thrombolic inflatable thingies going on and off on my legs and not in any kind of rhythm that I can ignore them. Bed bath, that’s better. But I’m still shit scared, act brave, be nice to the nurses, maybe they’ll tell me more. Also, better act sane, I need them to know I can cope with a baby, get him home sooner. There’s something really niggling my thigh but I don’t want to go anywhere near where they operated. Eventually I pick up the nerve, a wrapper for a maternity pad stuck to my leg. But don’t worry, I’ll try to sleep.

How will I tell anyone? I have to rally good thoughts, I don’t want to be judged for not being able to carry a healthy child. Wolf and I should be able to have a child. Somehow ITV has just come on and its Daybreak, or its incarnation at that time. Have I slept? Who knows, I’ve been in a self induced mind coma, going round and round, trying to dissect what’s happened, how to be, worry, worry, worry. Midwives outside the curtains, I don’t want to shout and draw attention to myself but I’m desperate to find out how Rufus is. Why don’t they want to tell me? Some plastic toast served by a well meaning auxiliary. Tea. Who knows how long I lie there for tears pricking behind my eyes, desperate to cry for my mum. Wolf rings, he’s got some things to sort out in the house- we’d literally dropped everything, he’ll be in later. Don’t rush, I’m fine. I’m not. But I don’t want anything bad to happen to him, I need him to believe it’s OK.

The midwives are in. How’s Rufus? We’ll call up to the unit soon, but we need to get you up and ready to see him. The thought of moving seems an enormous task. My lovely pregnant tummy has gone, replaced by gas that squirms and kicks in my tummy more than Rufus ever did. And I imagine a horrible, bloody, red scar, because he was ripped away from me too soon. It’s going to be akin to something out of Chainsaw Massacre down there. I’d be happy to lay still, wheeled to go and see him. But no, the best way to recover from a caesarian is to be up and moving Mrs D. There it is again, Mrs D. Have I still got enough make up on that I’m fooling them?

To the shower it is, I’ll do anything to seem OK. I’m alone with them all, can’t let the facade slip. I get up, it’s not too bad, it’s all pretty numb down there. Something runs down my legs. Yuck. Don’t look. My arse hangs out the gown, they peel the maternity pad off my leg. It is this gross, sorry. I walk, sort of, to the shower. The nurses bring the lovely new things my Mum and Dad got in the Trafford Centre last night- toiletries, nightie, slippers, underwear. My eyes sting again, I want my mum. But I’m a mum now, time to pretend. They sit me on the seat, take off my gown, I’m naked. It should bother me that I’m in a room with two strangers in this state but it’s the least of my worries. I look down at the dressing, so that’s what my heart skipping a beat feels like. Look back up straight away, smile at the nurses. Will you be alright to take that off Mrs D? We think it’ll be good for you to do it yourself. OK, it’ll be good for me. I’ll be fine, thank you.

They go. I’m all alone. Deep breath, look again. Pull at a corner. Look straight back up, the room is starting to fuzz, a ringing noise in my ears. Breathe. Nope. Got to do this, it’ll be good for me. Try again, this time the plastic toast starts to make its way back up. Pull the red cord, I’m going down, I don’t remember. The push of an oxygen mask onto my face, shouting that seems like someone running up a corridor to me. Getting louder. How did all these people get in to the room. Shit, I’m naked, the door’s open. The tears come, I’m embarrassed. Sobbing, get this mask off me, is wolf here? Scooped up in a towel, covered in god knows what, dressing still half on, put in a wheelchair and wheeled back to my bed. No wolf yet. Suck it up, act normal. Laugh at fainting, have a drink. They’ll be back in five to take off the dressing and get me clothed.

Wolf arrives, I can’t help it, I cry. But I’m fine, how are you? How did you sleep? Did you park the car alright? Meaningless guff. I’m dressed, I’ve showered with assistance, tell wolf about the fainting. Make him laugh about it. We’ll be alright. Midwife, ah you’re here Mr D. When can we see Rufus? You need to recover a bit more Mrs D- don’t want you fainting on the way. I don’t give a shit. I want to see him. But that’s not what I say, OK, I’m feeling a bit better. Have some lunch, we’ll arrange a porter for early this afternoon. How is he? We haven’t had a chance to phone yet, but they’ve not called us so everything must be fine.

So the title, the Roberta Flack song. It should be the most amazing moment for a mother, meeting her baby. Gazing down at this helpless, squishy bundle, all popping noises and reflexes, eyes opening, gazing back at you. Labour produces some marvellous results- you don’t get nothing for hard graft you know! When Rufus had been flashed in front of my eyes, I saw something. My heart beat in my throat. Did anyone see my reaction, shock, a little bit of disgust, that’s not right. I couldn’t see his lower jaw, was it there? Did anyone else notice? Nobody acted like it. Wolf, Mum and Dad had been to see Rufus for five minutes. Dad told me he was perfect. What about his jaw? Well, he was lying on his front, but everything looked perfect. That’s fine then. But is wasn’t, I knew.

My Dad’s photo of Rufus looking perfect.

Our time had come, Mr and Mrs D were going to meet tiny D. We held hands as I was wheeled along. We were excited. I was trying to forget my misgivings. Outside the ICU we were met by an Argentinian doctor, we looked at him with hope in our eyes, how’s our boy? He’s doing well, breathing on his own, he’s under the blue light for jaundice, nothing unusual. Defcon 5. But we want you to look at him, tell us what you think looks a bit unusual, then we can explain further. Defcon 4. He was very early and very small for his dates, and we’ve run a gross chromosome anomaly scan. They’ve come back normal, but we need to run some minor abnormality scans which take longer. Defcon 3. Right, OK, let me see him.

There he lay, my hairy Smurf. Blue with the lights. No gazing into each others eyes, he had a mask on. Spider monkey, all skinny limbs and fuzzy. Long fingers, big feet. Feet flat against his shins though, turned right up. Arms curled like he’d been cracked out of an egg. Still, not moving. A tummy that looked like a pumpkin, taut, round and ribbed. The ribs, prominent, bird like. The face, I’d not looked at it straight away, scared. He had a lower jaw, it was just set very far back. Huge ears. They lifted the mask. Well, it looked like a face. An upturned broad nose, but I still fell in love. There he was, my boy. The rush is indescribable. For those precious moments this was our boy. He didn’t look like what I thought a premature baby would look like, and I was proud of that. He looked special, beautiful. Nothing else mattered.

We were ready to leave. So Mrs D, what did you notice? His feet. Yes, he was breech and because of the lack of fluid they have been restricted. His tummy. Yes, he’s on IV fluids just now until it becomes less distended. We’ll run some scans and X-rays on it. Are you expressing? For about half an hour. Keep going, we’ll hopefully be able to feed him in a few days. I was avoiding it. Spit it out. His jaw. Well, his face does look dysmorphic. What does that mean? He doesn’t look like we’d expect. That’s the reason for the tests, plus his muscle tone is poor, we need to look at some syndromes. Defcon 2. What syndromes? It’s too vast to say. Defcon 1. The bubble burst. It took a long time for me to be able to look past the features they brought up. That’s not how it should be. Still, I pick up a photo. How do his ears look? His jaw? That’s not how it should be.

It should be the  way I get to look at him now, when all that becomes background noise, for the most part. And I capture him like this.

Are you looking at me?

Why?

When trying to think how to begin, the first thing I wrote was why, planning on some sort of snappy follow up like why blog? why write? but that instantly became a train of thought of my mind that quickly pulled into the stations of why bother? and why us? Well, why not?

Maybe it’s because;

I am a middle child. I suffer from middle child syndrome. Therefore I am creative in writing this, but also extremely middle child-esque for writing this melancholy piece.

But it’s not about me, or us, it’s about him. Rufus. Up until he arrived I didn’t realise how cushy our life was. A fairly ordinary upbringing, lifted by a great family, blighted by the usual reverse snobbery bullying that affects middle class children. A degree from art school. Meeting and marrying the lovely and sensitive wolf. A great job. A few months of trying to conceive and then success. In short, nothing to complain about.

But I will have done, because that’s what we do. And I’ve not developed some super human powers that exclude me from a good old whinge, Rufus hasn’t made me a better person. He likes a good whinge too! But when you’ve been really shocked, scared and then coped with the aftermath some of the small shit that you could moan about just falls into insignificance.

But this isn’t a post about moaning, there will be plenty where I rant and wail under the ‘why us?’ banner, particularly as I’ve chosen to take to the keys whilst expecting our second child. As the lovely sonographer and I agreed on Thursday, you can’t take anything for granted once you’ve known the taste of an unexpected trauma. I didn’t think it was the time to mention that it also rears a bitter, cynical occasionally psychotic side that one day won’t be responsible for the actions over the pregnant women smoking outside the hospital doors. Plus the hormones…

So, why Rufus? I was pregnant, I was really excited, I was googling pushchairs and baby things at 6 weeks. My sister was also pregnant, we were going to be able to spend part of our maternity leave together with the big, chubby, overdue babies that were a feature of my family. She had HP, he was perfect. That’s what I was getting, why wouldn’t I? The bump was little, but that’s because I was tall/muscular/just carrying him that way. Everyone’s always got a tale of how such and such had a small bump and their baby was huge. I had the 20 week scan, on the lower range of amniotic fluid, slight dilation in left kidney. But not to worry, such and such was told such and such from a scan and it was false. You know, don’t panic. Come back for a growth scan in 10 weeks.

We moved from London, we changed hospitals. The bump was still very small, but we were busy, and happy. I didn’t notice he didn’t move much. It was painful though, pains down my legs, I started to feel sick. The scan’s soon, don’t worry. Book your antenatal classes, carry on at work. It’s your first pregnancy. You feel like you’re wetting yourself a lot? That’s normal. It happened to me all the time.

The scan was coming up that day, I was watching This Morning. Myleene Klass in a neonatal unit. My heart ached for the families. Can you imagine that? Let’s go to the scan, excited to see our incubus again. Everything was running late, in with the consultant. Oh, you’re very small! How pregnant are you again? Hmm, can’t work out which way the baby’s lying. I’ll see you after the scan.

Another hour before the scan, a cheese toastie. We chatted about baby names again, convinced it was a girl because that’s what my bump looked like. Chatter, happy, together. In for the scan. The screen gets turned away. But its ok, I can hear the heart beat. Whispering, worried faces. Please go and wait outside Mrs D, we’d like to get the consultant to look at this scan. More waiting. Tears this time. Things aren’t right but what? The consultant walks past without eye contact.

Another half an hour passes. In with the consultant again. OK, so this time the amniotic fluid is barely present. The baby is breech. We’ll need to monitor you for a few days. The heartbeat is very fast. We relax a bit. Monitoring, that’s OK. They’re in no rush. I can go home after steroid injections just in case we need to deliver baby early. This was Wednesday. Thursday. Friday. Tears on Friday, we wouldn’t be sending you home if we were really worried. See you Monday, you have the number if there’s any concerns.

Sunday. Something gross. Gunky. Don’t worry Mrs D, we’re seeing you tomorrow. Can you feel baby? A bit. See you tomorrow.

Monday. Driving in listening to Radio 4. Giles Brandreth. We’re laughing at families of 10, had a bit of an falling out in the morning, barely concealed stress. But pick me up in an hour or so- we’ll go and look at cots in Ikea this afternoon. Nervous chit chat with the nurses, they keep furrowing their brows every time they look at the heart trace. Baby isn’t moving. Where’s your husband? we’re going to need to deliver this baby today. Naturally? No, no time, baby is breech. When? In half an hour.

Call Dad, he won’t panic. Call husband. Worried that he might crash the car. Shaking. Trying not to cry. Yoga breathing. Mantra, it’ll be alright, this is my journey to meeting my baby. Baby might be 4lbs and only have to spend a few weeks in neonatal. My first operation, bar teeth being pulled. No hospital bag. Full face of make up for going out in the afternoon.

Lying on the gurney. Lots of people in the room. We’re laughing at the polystyrene ceiling tile that pops in and out of the ceiling as the room is sealed. Baby out. No cries. The room is noisy but I can’t hear it. I just want to hear my baby. It’s a boy. We look at each other. Rufus it is then. Still no cry. Then, a cat’s mew, a tiny specimen is whisked in front of us before being taken away. More pushing, pulling and doing the dishes in my tummy. We’re just stitching you up. Stop leaning on me. We’re not Mrs D.

Out of the room, the pace slows down. The midwife comes to talk, my Mum and Dad have arrived, overjoyed that it’s a boy, a playmate for HP. We’re happy that the baby seems OK, he’s only 2lb 10oz though. The family can all go and see him soon, whilst we take you to the ward Mrs D. He’s breathing well, just needed some rescue breaths, we’re laughing at the lack of hospital bag and my face of make up. My first proper operation and I go in so unprepared.

And that’s where the journey starts. This isn’t the post to go into all the ins and outs of the ensuing weeks and months that past. Time slowed down immeasurably. Various ideas of a diagnosis, lots of testing, failure to thrive. That weekend.

But why today? Because after all the diagnosis and prognosis, we have Rufus who is doing literally everything he can to defy expectation, good and in someways bad. Health wise, he’s knocking the prognoses on the head but his development is hard to define. And he’s still on lots of medicines, and tube fed, and looks, in the words of the community paediatrician “a little dysmorphic but its hard to tell with him being so small”. We have teams of people watching him. He has the diagnosis of congenital nephrotic syndrome, with no known genetic cause, hanging over him. He has an uncertain future. But I’ve been given the opportunity to afford him a lot more of a normal life than was predicted. So I’m taking some of that time to write, to deal with a lot that’s buried and troubling. And when I’m not at work, allow me to focus on something else to now go completely loopy or over anxious now I’m carrying again.

Is that enough? If not, here’s the eye candy. The boy. Gorgeous in his dysmorphia, in our eyes.