Happy Birthday?

Today is RD’s 7th birthday.

I wonder what he would be like as he should be moving from an infant to a junior. Of course, neither his size nor his cognition would be moving up in a stereotypical way. No doubt, if he were still here, I would be feeling the weight of that. I would be learning yet again to live with the rising fear in my throat: long term care needs, further adaptations. Eyes fully open to the fact that in that instance, life gets harder to navigate. Inclusivity gets harder to wedge in.

It’s difficult for me to write that, to admit to that, for fear that it is interpreted that I am relieved that he is forever five. That somehow I ever thought of him as a burden. Honesty comes with that price though, an interpretation that doesn’t cover the complexity of human emotion. The ying and yang of true love, and of being a parent, of being a parent carer. There’s a whole lot of greyscale. A lot of overlaps in Venn diagrams. It’s the playdoh after too many squashings.

It’s his birthday, and already I’ve had to shift about some vague plans. DD was up in the night with worms. Yes, frigging worms. Of all the filthy-starting-at-school-bugs to pick up, this was what she had the night before his birthday. I had to examine her bum by torchlight. There has been copious washing of clothes, towels and bedding. I’ve doused the house liberally with Zoflora. The day has started crankily.

On the walk from the pharmacy to school drop off, after she chewed her ‘gross’ tablet, conversations seemed to fall from nowhere.

“Mummy, did RD have to take tablets?”

“Yes, every day. Mummy and Daddy would crush them and mix them with water to go down the tube into his tummy”

“Could he not chew them?”

“Not really. Do you remember what he did like to drink? Do you remember his cup?”

“Was it purple and sparkly?” “Yes!” “Did he like strawberry juice?” “No, just water” “Did he not like anything else?”

Spirals and spirals of conversation: did he chew toys? Did he suck his fingers? Did he get worms?

They’re reading Aliens Love Underpants at school. We have a copy somewhere, bought for RD, with noisy buttons down the side. I’m fairly sure he used his minimal muscle mass to rip book from buttons though, so I mentioned this to DD, but that I would try and find it.

“Sellotape should fix it Mummy. Have we got sellotape? We have the book at school but it’s not ripped because there are no babies in the class to rip it!”

“Wait, DD, RD wasn’t a baby.”

“Oh, I mean big babies. Ones that can’t walk or talk and like buttons and rip things”

(Fuck)

“No, darling, RD was 5 when he died. You’ll be 5 in a few weeks. He was your age. He wasn’t a baby, he was disabled. Sometimes people are different. RD’s brain and body were different to yours so he couldn’t do things the same way.”

“Will I die when I’m 5?”

(FuckFuckFuck)

“NO! No, your kidneys are fine. Remember we talked about that the other day?”

The other day was Sunday, the day when she suddenly asked why he died. When I gave a potted anatomy lesson, and she giggled about wee.

It’s RD’s seventh birthday and it’s raining. BD is having an enormous nap in their shared room. It’s so everyday and yet it’s not. Plans are shifting and changing with the only real goal a party tea after school. I wish I could preserve it and keep it aside just for RD, but life is butting in and making itself so very pronounced.

I don’t know if I’m sad, or happy. I have moments of complete joy- the peels of laughter from BD as DD showcases her moves on the ‘stage’ (our kitchen floor). Dancing to the tunes coming from the new bright orange radio bought in RD’s honour for his birthday. I think back on birthdays past and they weren’t all rosy- I didn’t get to hold my baby until a week after he was born, wherein I cradled a tiny fragile bird connected by seemingly a million gossamer wires to an incubator. His first birthday where I cried copiously in the garage at his party as I knew he wasn’t doing anything anywhere near what would be considered a milestone. Where I realised his sensory needs were too much for a busy party.

His third, fourth and fifth birthdays were good, but lowkey. There was always just the slivers of sadness there as he aged chronologically but not developmentally. A mass of contradictory emotions.

I talked to Wolf about it the other night. If RD were still alive, I would want the 5 year old version of RD. I would want him to be forever five, where he was bursting with joy and interest and health. Where he’d just about grasped opening presents and surprises. Where I could still carry him, not necessarily easily, but he fit into the crook of my arm and the nook of my neck. I would want him forever five but not in the way we have it.

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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.

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.