Lucky Beggar

My French, which was never much above borrowing-the-pen-of-the-gardener’s-aunt standard, has dwindled significantly during the 19 years that have passed since I last sat a French exam. I can, however, still remember how to blurt out the single, solitary phrase that I ever used in genuine French situ: a tearful foreign-exchange 11yr old on her first time away from home, stuck in the beautiful yet oh-so-isolated St-Aubin-Chateau-Neuf, realising that she probably wasn’t going to make it through dinner with her kind, yet very much non English-speaking host family, without grizzling miserably.

“Je suis très fatigué!”

And I am. I’m done in. I uncharacteristically fell asleep on a sofa yesterday evening, while Harry, puzzled by my non-combative status (‘Marmee! Marrrrrmee?’ is his latest pronunciation. I have been having Little Women thoughts all week) busily fed plastic coins down my cleavage while I dozed. I had odd dreams.

Yesterday, I held my annual coffee & cake morning for Bliss, the Premature Baby Charity. I wrote, last year, in a reasonable bitterness of spirit, a little about why I do this. Several people have asked me: why not just write a cheque? I could do that, I suppose, because I work in sales for a living and selling cake to family & friends in my spare time is definitely something I could happily Not Do, as it happens, but for some inexplicable reason I feel like I have to suffer a little.

John, who is my chief appointed tidy-upperer at Hairy Towers for this occasion, would very much like to suffer a good deal less, and would delightedly buy himself out with a cheque. Procrastination, thy name is Husband; he managed to convince himself that the vacumning, junk-clearance, toy-boxing, coat/shoe-tidying, floor mopping and trailer-park-trash-removal was able to wait and industriously set-to with a hoe to weed the patio, before disappearing A) to the recycling centre (with the old dishwasher that’s been sat outside for 6 months) and B) to drink coffee at his mate’s house. He was inordinately cheered when my mother, like the hero she is, risked life-long asthma and tidied the dog room for him. He would really, really prefer that I wrote a cheque.

But writing a cheque would deprive me of the opportunity to rant. I get very ranty indeed about the topic of neonatal critical care in the UK. 20,000 babies a year need Intensive Care in this country. Not just Special bit-prem-bit-scrawny-can’t-maintain-own-temperature-or-suck/swallow/breathe-properly-yet Care – although God knows that’s plenty, plenty horrible enough. Intensive Care. Please-Don’t-Die Care. I-Will-Hear-These-Sounds-And-See-These-Sights-All-My-Life Care.

Which is often extremely tough luck for the 20,000 babies, on a number of counts, because finding a local Level 3 NICU cot is like trying to find a taxi at 1am, New Year’s Day. It’s luck, you see. Not standardised provision. There’s plenty of cars in the world, yes, but… a taxi? Vacant? Near you? Manned by a licensed, alert driver? Good luck with that.

We were lucky with Harry. God, we were lucky. We had the last bed in our local, brand new-equipped NICU, 10 miles away. It took several hours to stabilise him enough to transfer him onto the ambulance ventilator and actually get him there, during which time we were stuck at the wrong hospital with no mobile phone signal and we were bowel-meltingly terrified (there really ought to be better synonyms for scared) he might have died, and his first few days were filled with atypical, unusual seizures, massive desaturations, hole in heart with grade 4 murmur, suspected brain damage, suspected necrotising enterocolitis, suspected infection, second-line antibiotics and a spinal tap, but… yeah. Lucky.

I can relate the whole sorry tale, and I tell you, I still feel really, really fucking fortunate. 

The parents of the baby in the cot next to Harry? Weren’t lucky.

We can’t save them all. I know that. But we can save more than we currently do in this bloody country: people are often surprised when I tell ’em about the UK’s infant mortality stats. Trailing in, 24th in the European Union, level with Croatia, is… awful. I’m not knocking Croatia: the UK undeniably has advantages that they do not, and WHATTHEBUGGERYFUCK, UK?

Sigh. This is the buggery-fuck: there’s just not enough staff. There’s a chronic, chronic shortage of neonatal specialists, ergo the available cots are under hellish pressure, and patient care is, inevitably, sometime compromised, because the service has been stretched to its limits, almost since inception. An adult admitted to ITU can generally expect one-to-one nursing care. Despite the wearisome year-in, year-out, same-old recommendations for improvement, a neonate often cannot (although their medical needs are, arguably, greater than an adult’s) because there simply. Are. Not. Enough. Staff.

Harry’s NICU cot was next to the ward desk, and I could hear, over the cacophony of beeps and alarms, the sister on the phone, trying to fill shifts. Asking tired nurses to come in on their days off. And, although I deeply appreciated, even at the time, how these men and women needed their down-time to recharge and relax, I couldn’t help being acutely aware that it might be Harry’s night nurse shift she was trying to fill. I was the epitome of Conflicted.

I can’t think of a higher-pressure job in medicine than neonatal and paediatric intensive care. Your patients are, without exception, adorable. They have everything, everything to live for. When you lose a patient on these wards, it’s not an easy, quiet death. Not a gentle death; the closing of a fulfilled life, with children and grandchildren stood ready to mourn, to grieve, and, eventually, to accept and to smile at their memories. These medical staff must, daily, stand ready to face that most unnatural facet of human existence: the death of a child.

When they unhooked the baby next to Harry from the ventilator, and wheeled the incubator out of the ward, I saw the face of the nurse who was bagging the child – mainly because her face was an easier one to look at than the parents’ – and the tears were pouring down her cheeks like rain.

I want that nurse to be able to take her days off, and not feel guilty.

I want that nurse to be properly supported and trained in her important, specialist role.

I want that nurse, who put her arm tightly around me when I cried over my desperately-poorly son, not to burn out under the stress of her job and working hours, and leave the role to others with less empathy. (Of which others, I have to say, I found a few too many. These tiny neonates are beggars, and cannot, sadly, be choosers.)

I want every baby to be born healthy, but I’ll settle, pro tem, for every baby getting the best quality care this country can give – without having to be unnecessarily and dangerously transported hundreds of miles to find it.

I would love a donation, no matter how small, but I would also like to direct the flinty gaze (or stony. Stony is also good.) of UK readers at the Secretary of State for Health, Andrew Lansley, MP. A draft letter to the bloke can be found on this page. Your MP, who should be exhorted/pleaded with/blackmailed (please delete as applicable) to approach Andrew Lansley on the topic, can be found here.  

A most sincere thank-you to those of you that came along yesterday. I know some of you read – indeed, some of you blog! – and I really do appreciate your kindness to us. To Harry. To me. I liberated you of £227 and I am delighted with my shakedown!

I was humbled beyond belief last year when so many of you, whom I have mostly never met, donated online. I was completely mentally tripped-up by the notion that my odd little corner of the internet could have generated so very much unforeseen good will, generosity of spirit, and sheer human kindness. Many of you found me here because you do not – yet – have children, and yet you gave your money to Bliss – a charity that helped us, Harry, and his medical team –  because it was a cause dear to my heart, not yours. 

I cried. I cried for days.

I do not take your support for granted, and I know – don’t I just! – that times are hard, and the wolves are likely snapping as closely at your fiscal sledge as they are at ours. But if you are able to hurl off an undeserving peasant give (from each according to his ability, from each according to his need, type-of-thing) then I would be… well. I think the word is verklempt.

There is a minimum donation set by the Just Giving website of £2 (approximates to USD$3.33 / AUD $3.20 / €2.3 / 0.00232344 gold ounces) and if that’s what you’re comfortable sparing, then please, believe me honestly, truly grateful, and more than grateful.

http://www.justgiving.com/DarthToddler

I am jollying the donation process up a little: I have bought two very friendly young Bliss teddy bears – everyone needs a teddy, or knows someone who does –

to give away, and shall do so with the help of random.org, among everyone who donates and leaves me an email address to contact you with. I’ll post them anywhere in the world: I don’t care if you’re Santa’s little helper or an Antarctic scientist. 

And… if you’re still with me all the way down here… thanks for reading, peeps.

Ann xxx

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Rumbled

I knew I’d have my cover blown eventually.

It’s just… that I was so sure I’d be the drunken architect of my own undoing. I could picture the scene quite vividly: me, pub, injudicious quantities of wine, blurtyblurtystumbleblurty. Consequently, I’d imagined it would be my internet-savvy friends that found me, and I was … reasonably ok about that. Braced for the possibility. I had a vague notion of standing bravely by every gynaecological and paranoical quirk I’d pegged to the public bloggy washing line, despite feelg that there are some things, particularly of the intimate mucus variety, that really do not need to be burning into your family retinas.

But lately, I couldn’t quite rid myself of a naggy feeling that the Bliss Just Giving page might come back to bite me in the bum somehow. I had stupidly given my dear old Dad instructions to crank open his wallet via the site in order to let Bliss reclaim the tax – why I simply didn’t go and print out a bloody Gift Aid form for him, I really don’t know; I was tired, I expect. And sure enough, one or other of my lovely ancestors (Hi, folks!) has (with impressive internet detective skills that I freely admit I had thought rather beyond their technological reach) tracked me down – if the fact that I spotted this blog in Favourites on their laptop earlier this week is any kind of clue.

But hey, at least I’m in their Favourites! They like me! Me, their only child! Who knew!

And I still left the posts up, unpassworded, because there’s nothing here that they aren’t aware of in any case, bar the eye-watering gynae detail, albeit I’m too grumpy and busy sitting on my bum and eating their food to deliver information clearly or concisely half the time. 

You see where this is going, don’t you?

I dropped Harry off at the nursery I am now calling Abacus on Monday, and explained that I’d been unable to get through on the phone regarding the last two sessions, which we had missed. I had lost their original details under the compost of paper, lego and coffee cups that forms our filing system, and had been obliged to google their telephone number – an old one, as it turned out; they enquired where I’d seen it.

‘Oh, just Google it!’ I breezily advised.

So they very conscientiously did, today. And came straight here, because I’m now the 14th bloody search result for the place. Harry attended this nursery in the first place because it was a family friend who co-ran it. More specifically, a friend of John’s mother’s.

The three great communication mediums: telephone, television, and tell family.

Cue knee-jerk passwording. And… I don’t know what to do now. At all.

I can keep blogging, and password the stuff I’m reluctant to broadcast, but I’ve used a password for the odd post here and there already and it doesn’t feel like the right thing to do, personally, although it would tick a lot of the boxes. (Incidentally, on the subject of protected blogs, does anyone have Akeeyu’s email address? Typepad hates my guts and refuses to let me beg her password.) Or I could not talk about things pertaining to family, friends or the aberrant sack of lard I affectionately term my body – but you hear virtually bugger-all from me these days in any case; if I start editing out the subject matter: I got nowt.

I think I’ve either got to publicise the damn thing and square up to the fact that everyone knows what my morning pee-stick said or disappear somewhere under a flickrless, twitterless pseudonym and stamp hard on the virtual fingers of anyone who links to me.

Of course, there’s a billion infertile bloggers with two uteri and a back-to-front heart out there for me to just blend straight in with.

I’m sat here slugging away at the whisky – because WordPress has been a proper arse about all this – and telling myself that two of my favourite bloggers, Amy and Antonia, both of whom have children, seem to manage this identity-known-to-all business just fine, so why am I making difficulties and getting in my own narcissistic way and being interminably precious about it?

I’ll… figure it out. Somehow. I’m (doubtless, naively) hoping to have some quality laptop, tea-drinking and cogitation time over Christmas.

Speaking of which festivity: Harry has now encountered Santa twice. Predictably, he has twice taken immediate refuge either in my arms or the far side of the room – although once the penny dropped that the dude was actually handing out gifts, he let me edge him close enough to snatch Father Christmas’s offering with the speed of a striking cobra, before rapidly backing off again, clutching his present close to his chest. Bless the child.

The hubby’s abdomen-to-groin ripped muscle is finally starting to bruise, and it has sent virtually his entire… package… black. This has been the subject of much domestic hilarity, but as I’m feeling a bit draughty in the gaping open door of my blog just at present, I’ll spare you the details. Although, come to think of it, if I wanted to solve my current blog problems, perhaps… I should just… post a photo?

That’d stop ’em dead all right.

A Tiger? In Africa?

First things first: a sincere and very humble thank you, thank you, thank you for your wonderful, unexpected, staggeringly generous support. I am truly bowled over by it.

I had thought maybe a handful of you might chuck in a couple of quid for a good cause and I would have been so delighted and appreciative had you done just that. As it was, I kept blinking at the screen in awe as the total kept going up; the fact that so many of you dug deep into your credit-crunched pockets has left me stupefied, touched and grateful beyond words. I cried so many bloody pints, in fact, I couldn’t shift the resulting headache until yesterday. As of this evening, the grand total http://www.justgiving.com/DarthToddler stands at £751, and the gift aid (tax relief) Bliss can reclaim on our direct donation of the £261 raised via the coffee morning, will send the effective value well over £800.

Bless you, internets.

(BTW, UK readers might like to consider Bliss’s lovely Christmas cards. If you are a knitter, there is something else you can do, too: knit some breasts.)

I’m still not in my usual mental place about cake (deep and fervent desire, generally) and I was fair buggered after it all on Sunday. John, with a forbearance he does not usually exhibit, let me sleep in until 10am without muttering under his breath OR inflicting Harry – a bouncy, morning toddler – on me. He didn’t even moan much when I disappeared, grinning broadly, to the Hobbycraft show at the NEC, although it was absurdly, tiresomely crowded and the queues for coffee were daunting; after an hour or so of employing the wifey Elbow into unyielding backs I was beginning to feel a bit limp about things again. I even fell asleep in front of the TV, which is almost unheard of – and followed it up with a night of insomnia, which isn’t.

And since then my arse has not stopped scurrying dementedly about, because this is, work-wise, the busiest month of my year. I attempted to combine parenting with work this morning: my post natal group (which, for want of a suitable collective noun, I term the Piddle) meet at the local playbarn on Wednesday mornings, and I thought, as Harry generally scuttles about the playframe by himself – much like a hamster on speed – while I latte-up and wave from the ground, that I could arrange a regular stationery-selling gig there, and still take him with me. The playbarn agreed, so this morning I saw him bustle off to play alongside the rest of the Piddle toddlers, and had no sooner begun unpacking my boxes of Christmas cards when a friend appeared at my side.

‘I realise this isn’t what you want to hear right now, but Harry’s filled his nappy. It… errr… reeks!

Ohhhhh. Nice!

Gave friend cash tin to guard. Captured protesting child before he could spread it about any further. Inserted him in arms of another friend who had unwisely strayed too close. Galloped outside and extracted nappy bag from car. Reclaimed child. Carted yammering child to changing rooms. Recoiled in dismay from diarrhoea-y output. Noted glumly that vest was heavily… compromised. Trousers, thankfully, escaped with mere light staining, which I pretended not to notice, due to absence of any alternatives. Changed impatient child. Double-bagged shitty vest. Noted sore bottom. Rummaged through bag for barrier cream, unsuccessfully. Cursed. Unleashed clean child back into main area. Returned to unpacking cards.

A few minutes later I am still head-down, arranging, when a lady I have never seen before in my life approaches, holding Harry by the hand. He is wearing … Christ! … just his nappy and t-shirt, and she is holding his trousers.

‘Excuse me! Is this your son?’

‘Oh God.’

She took this for assent.

‘He was running about happily at the bottom of the big slide, but his trousers were sat half-way up it!’

I managed to splutter something about thanks, made reasonably incoherent by shame. The Piddle were all wetting themselves – ha ha – and Harry was firmly shepherded into the toddler section where they could keep an eye on him for me. Work/Motherhood FAIL. Thankfully he forgot about his trouser-removing mood, but later duly proceeded to have more diarrhoea, necessitating another lengthy trip to the changing room. I was worried about him rubbing his little bottom raw, but repeated enquiries about ‘Home?’ all met with a determined nolle prosequi and it was gone lunchtime before I brought him home for a late nap on the sofa, nappy off, legs sprawled and bum slathered in barrier cream.

His portage visitor is coming in the morning and I am guiltily aware that both cramming in more work than normal and the weekend’s frantic activity have meant that we have not done our piano practice, so to speak. His portage worker is puzzled by Harry, as are we all. He seems such a bright little boy in some respects, yet there are some fundamentals that he still isn’t grasping at all. He can answer a question regarding his own wants easily, but cannot grasp anything more abstract.

For instance: although he can give a firm and clear affirmative to ‘Would you like some grapes?’ he cannot grasp the meaning of ‘Have you finished your grapes? Are the grapes all gone?’ It’s not that he has no personal gain or motivational interest in answering an abstract question per se, or even that he doesn’t understand the meaning of the individual words, because he does – it’s just that there’s no comprehension there at all. He listens to my words, but remains impassive, clueless on how to respond, or even that a response is required. Yet if I ask him to give me one, two or three kisses, he wheel-spins towards me happily to plant the appropriate number of smackers on my lips.

His communication is slowly, imperceptibly improving. His proto-words and phrases are becoming more consistent and although he still does not have a single clear word he is sometimes easy to interpret; one of the playbarn ladies who rescued his trousers (pause to wince and mourn my maternal pride) assured me she had asked him where his Mummy was and understood his response. (I expect she got ‘Daretiss!’ (‘There it is’) with an enthusiastic gesture to back it up.)

His gains are so gradual that I’ve had some panicky days about it again lately. His default babble-noun currently is ‘Tayzass’. Everything is bloody Tayzass, all day long. He  has expanded on the ubiquitous Muuurrrrmmm! and his repertoire of animal sounds now includes piggy-snorts, horsey clip-clops (with jiggly rein hand-gestures), sheep baas (glotteral throat-coughs that sound like a machine gun with a terminal blockage) and tiger, complete with a lovely little RrroOAaaaWWRrr and pouncey-paws. I get regaled with the Snorty-oinks, the Muuurrmmm, the Ack-Ack-Ack-Ack-baaas and the clippety-clop sounds pretty regularly from the back seat as we drive around Warwickshire – and his hawk-eye spots a tiny specimen 4 fields away. Tiger-roars from the back seat are, reassuringly, reasonably infrequent.

I have only just now realised (go me! but Yay for the constructive thought-process that is blogging) that his effortless recognition of large numbers of Makaton signs coupled with his indistinct, confused and highly limited use of them, precisely mirrors his difficulties with spoken communication. His understanding of speech is entirely age-appropriate – everyone thinks, bar the reservations over his puzzling comprehension-gaps – but his speech output is currently still fairly banjaxed. He only uses the signs for ‘ice-cream’, ‘more’ and ‘please’ pro-actively, although he uses those plenty and often. Are you getting a cupboard-love theme coming through, here?

I had a fair few people who caught sight of him beetling happily around, a beaming centre of attention, at the coffee morning, later ask me breezily about his speech – in the obvious expectation that I would have news of his suddenly starting to speak in sentences, Just Like Their Neighbour’s Cousin’s Stepbrother’s Friend’s Kid They Cited To Confidently Reassure Me last time I encountered them. And I found myself taking no pains at all to let them down gently – or give them much of a leg-up out of the subsequent conversational hole they found themselves in – when I answered that No, no speech and next stop: Psychology & Brain Scan. Which was undoubtedly uncharacteristically unkind of me, particularly as they had dutifully tipped up to give me some money, but I’ve been feeling rather angst-ridden about Harry’s future lately and its been spilling out around the edges of my Politeness containment field. We saw the little girl who is Harry’s direct contemporary this evening, and she is suddenly three inches taller, spouting huge sentences, jumping with staggering co-ordination and rolling the skittle ball like a bowling pro.

And to think I was revoltingly smug because Harry could sit up and walk first! I know, I know, I know: he’ll probably catch up, and the fact that she’s obviously developmentally surged ahead of him shouldn’t get to me, but it really bloody has. Despite everyone’s best efforts he is still struggling against difficulties with both his body and his brain – and the more I feel like this, the more I feel that I really want that MRI, for the bringing of either reassurance or answers.

And And And And my period is now well into its third sodding week, and getting heavier and more aggravating by the day. My hair needs cutting. My gym membership has run out. I have lost no weight at all. My eyes will no longer accept my contact lenses, and I detest wearing glasses. The gastro thing I kept moaning about so often earlier in the year is still happening, I just got tired of whinging about it continually. I am woken up at erratic intervals, always and without exception between the hours of 2am and 4am, by a 3 or 4 hour bout of debilitating upper abdominal pain. Drs best guess is endometriosis, ulcer or – mostly likely, given the symptoms, but least likely given that prodding my gallbladder doesn’t make me yelp – gallstones. I am currently on anti-acid thingies, with the additional instruction to eat a thoroughly greasy curry and see if it brings on an attack.

I’m too… ummm… chicken to do it.

That is all, as it is nearly 2am and I can think of nothing else to whinge about just at present.

Thank you so very very much, again, for your marvellous support of sick, small and premature babies – and of me.

To borrow the phrase of a dear friend: I appreciate the fuck out of you.

Overwhelmed

…and have just sat down for a little cry.

I’m so very, very deeply grateful for your amazing generosity.

Coffee morning raised well over £500 and still counting.

To say I’m touched is… just… inadequately phrased.

The cakeless internet has raised as much as more than my cake-stuffed friends and family, and you are all invited to tea.

Going away to cry again now.

Updated to add: Still absolutely humbled & blubbering. And my father – ‘Gramps’ – was directed to the website to maximise the value of his donation through gift aid, rather than faff about with paper forms. (This is in addition to selling raffle tickets like a man possessed yesterday AND donating a fabulous planted-up flower tub for the raffle AND putting the topping on my carrot cake for me at the last moment.) He is now awfully curious to know who these generous and wonderful friends of mine are on Just Giving that he’s never met or heard of! Bless you all. And I’m so sorry that Just Giving have obviously chosen this weekend to do site maintenance. Rotters  

CAkes

cakes 2

Cakes 3

Atonement

Calendar tomorrow: Coffee morning for Bliss, the premature baby charity.

State of mind: numb with tiredness.

State of back: screaming in pain. 

State of house: still a pit, albeit with clean carpets. I heart the Rug Doctor.

Portions of cake I have made: about 150. More if I’m stingy with the cutting.

Number of attendees expected tomorrow: anything between 15 and, umm, hundreds. Well, maybe not hundreds. I have put posters up in the two neighbouring villages, and who knows what this will crop. Probably 2 ancient biddies who have only come to steal the silverware and size up the Renoir.*

Amount of work John has done to help me with this: very little.

People I am doing this for: the baby in the neonatal intensive care cot next to Harry whom I watched being unplugged from the ventilator, before being wheeled away to the family room to die. The baby’s parents, who followed the cot out of the ward, holding hands.

Hoping to achieve: A decent donation to Bliss. Amelioration of guilt. Expiation of sins. Exorcism of demons. Etc.

http://www.justgiving.com/DarthToddler 

& apologies to L’eggs’s Tricky for stealing his nickname.

*I don’t have a Renoir.

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