There’s a worm at the bottom of???…:🐛🌹

I’m sitting on a train heading to ‘that there London’ (AGAIN!)* and I’m feeling rather queasy…. in fact it’s entirely possible I may lose my breakfast…. and it’s absolutely nothing to do with the hot chocolate with enormous whipped cream topping…. mainly consumed by Minx anyway. True story.

I’m not travel sick and NO, before any one asks, I’m definitely NOT pregnant! So what’s the reason behind the dodgy tum?

A phone call I’ve just taken from one of our lovely children’s community nurses (CCN’s).

Before I continue, I want to make it clear I can’t fault our fabulous community team in anyway. They are truly awesome & go above and beyond to support and assist, buoy me up & go into bat for us when necessary. But today….. after the obligatory hello’s and chatting, 3 very ominous little words came out of the CCN’s mouth:

I’ve been thinking…..”

There are many, many ways these oh so innocent musings could be interpreted; For example, Mr DNTW’s will tell you that hearing me utter them strikes fear, dismay and unease, swiftly followed by him sighing and asking “what do you need me to do and how much is it going to cost?!” I am after all rather partial to a bit of DIY and a Pinterest protégée. 😊

Sometimes the brilliant ideas I have are a little bit far-fetched and carried away. Sometimes it might be said I’ve been a tad over-enthusiastic about both our capabilities and availability of resources but generally speaking, they turn out alright & even the ever-doubtful Mr D usually stands back surprised and pleased with the ultimate effect. Who knew I would so successfully convince him that ‘lagoon splash’ paint would look strikingly effective on the garden fence; so much so he is insistent that we do the new panels in the same shade? Anyway I digress.

So back to the vomit-y inducing words of the CCN this morning. Alas, she was not debating with me the intricacies of distressing furniture versus sponging it, nor musing the right colour of blinds for the bathroom window (things currently being mulled over by yours truly… 1st world problems and all that) No.

Apparently her week’s break away from work, exploring the delights of Scotland had induced a light bulb moment in regard to G Man’s frankly grim surgical site which still hasn’t healed post op from June. Further more, recent swabs (I’ll spare you the ins and outs) have shown G-Man has a really nasty staph infection in the site itself.

Staphylococcus bacteria live harmlessly on our skin most of the time but if they get in to cuts or bites, it can potentially lead to very serious, systemic infections.

It’s not something you want to under estimate; a seemingly healthy individual can deteriorate rapidly and the threshold for hospital based treatment and admittance to prevent sepsis is low.

He’s already been on a strong course of antibiotics but it’s not really showing much of an improvement and I strongly suspect that given we have just finished a course, after a few days off, we will be right back to square one.

We are already mindful that any raise in temperature, the smallest signs of being unwell or the operation site looking worse, means rapid access to our local children’s ward for proactive management. Frankly brilliant though our local hospital is, I’d rather stay away, thank you.

So I too was eager of ear to hear the CCN’s revelations, albeit I did remind her that time off from work is *supposed* to be a break and flattered as I am that my urchins were on her mind, she really needs to get out more!

Whilst ‘distressing’ the furniture might currently be occupying my mind, it’s fair to say that the words she uttered after the ubiquitous ‘I’ve been thinking’ were very distressing to yours truly: ‘what did I think about larvae therapy?’ 🤢

My first thought was that I tried very hard NOT to think very much about larvae at all really. I tittered on nervously on my very crowded train & asked hopefully if I had misunderstood her words and she actually meant ‘lava’ therapy or even ‘lather’ (better yet, lager therapy?!😉) but it was an empty, clutching at straws kind of a query.

I suppose it’s logical really. I remember in history covering this ‘delightful’ subject when we explored medicine through the ages. Even Casualty (the TV program not local A&E!) devoted part of an episode fairly recently to the magical, restorative properties of maggots thriving on poorly healing wounds. Gip. 🤮

And there’s no doubt that some of the more far-fetched/rumoured old wives tails do have their foundings in facts, even if the science side wasn’t necessarily quite understood back in the days of old.

In the more (allegedly) evolved and enlightened world we live in now, with the widespread and ever-growing concerns about antibiotic resistance and in combination with our fears of pollution, climate change & such like, it makes perfect sense to consider a more holistic, natural approach. I just wish it didn’t have to involve my family…

My stomach churned uneasily as she continued to extole the virtues of our mealy-mouthed little fiends friends. I squeaked a bit, giggled nervously & blew my cheeks out a lot. By this point, even though I was trying to be discreet, it seemed half the train carriage were eager to learn more about the source of my discomfort and I don’t think I was imaging the gimlet eyes of those around me boring in & edging closer as I listened, equal parts intrigued and revolted.

As the CCN warbled on, she attempted to persuade me that they are in fact the insect equivalent of being on the Debrett’s honours role. Allegedly their pedigree from back in the day boasts something to do with the making of Princess Diane’s wedding dress (I’m not ashamed to admit I did google trying to find the somewhat tenuous connection but I think that was a family of the Silk-worm variety) no less. Clearly my non- committal “uh-huh” demonstrated my ongoing ennui with the subject matter.

The CCN remained undaunted and in a bid to reassure me she wouldn’t be rocking up at the house with an old ice -cream tub full of wrigglies that she had collected from around the neighbourhood, she continued to outline that IF (& I have to stress, it really feels quite a bit IF…. I know, I know, I need to put my big girl pants on 🙄) we went down the larvae debridement route (posh hey?!) the larvae would be teeny, tiny little things encased in a perforated tea-bag like structure that she would apply to the skin…..for a week….. 😬. If this was supposed to make it more palatable, I can’t say it worked…. certainly don’t want to get one of these mixed up with the Earl-Grey & PG tips of a morning….would definitely count as a rude awakening!!

So I have been left with the task of doing some further research and seeing what I think before we proceed further. Ultimately I know I should be very grateful for anything that *hopefully* prevents the need for surgical management and I know that it’s quite an expensive ‘last hurrah’ so I guess it’s a case of Hobson’s choice really isn’t it?

All together now, I await your rousing chorus of “there’s a worm at the bottom of the garden and it’s name is Wiggly Woo, please!

* As usual it’s taken me a while to finish this post, rudely interrupted by hospital appointments as I was, so it’s now afternoon….& I’m still feeling icky!!

Planes (no trains) & automobiles…..*

*also a boat(s) but that doesn’t scan as well!

** & yes I know it’s a film title..

Bonjour mes amours!

It is the end of the 6 weeks school summer holidays (in England) and we have been lucky enough to spend 2 gloriously hot weeks in Southern France, followed by a mammoth drive to Paris, a dabble in EuroDisney and now as I sit and type, we wait expectantly to board the boat back to Blighty…. for an onwards drive back ‘oop north.’

It has been epic; in all senses of the word. I don’t know if the ‘cool’ kids still use the word epic to describe an amazing time or not but it definitely falls under that.

Equally however, as per the Oxford English Dictionary classifications, our hols could be defined as a ‘heroic/grand saga’ requiring much ‘bravery’ and a ‘long and arduous journey;’ yeah definitely all of that…

It would be fair to say that when I first mentioned our 3000 mile (return) travel plans to various medical personnel involved with our enfants horribles , there was some *slightly* nervous tittering. And it wasn’t just me doing it. 😆

Apparently taking all 4 of your offspring aged between 10-19 on such a journey borders on insanity/madness. Especially if they also happen to have some issues….

And I won’t lie, it hasn’t all been champagne (not much of that actually!) and roses.

When Mr DNTW’s informed me he had booked for us to go away way back in March, Minx and I were cooped up in GOSH, awaiting the ‘big plan.’

It seems an age ago now but at the time, we were all in need of some cheering up as it had rapidly become apparent during that stay that we were in for the long haul; that the carefully laid plans thus far had been stomped on, ripped up and had gone awry. The more cynical of us *may* have argued that the plans had never been properly drawn up in the first place but that’s a whole other story…..

So when Mr D made his triumphant announcement about the booked holiday I was rather more concerned by where he had found the magic money tree to pay for said holiday (still looking 😉) or whether he had sold my collection of shoes & handbags on e-bay to pay for it!

Through the lengthy weeks of hospital time, hospital stays and subsequent limbo, having the holiday to focus on became a shining beacon of hope and something to really look forward to.

Despite Minx and G-Man’s combined efforts to throw (surgical) spanners in the works, their procedures came and went. Healings were (are) complicated and I had to stock up on the mobile equivalent of a field hospital which brought its own issues in terms of getting everything delivered in time and space in the car

No room at the inn…the grey trunks are all medical supplies…& there’s a roof box full as well!

I didn’t even really flinch (too) much at the astronomical quotes we got for travel insurance – ranging from cheapest at £1300 to £2600!!! Actually I did; I really did…. until I cried when the most reasonable company called me back after I had phoned to give them more info (like many I suspect our family don’t fit neatly into black and white questions: is …….a wheelchair user? Well yes but not all the of the time? Apparently that’s like being ‘slightly pregnant’ where insurance companies are concerned – you either are or aren’t, no middle ground) and declared that based on the additional details I had provided, Minx was in fact uninsurable!! 🙈 I hadn’t even mentioned the words “undiagnosed” – a veritable death knell where insurance is concerned!

Eventually after much research and consulting of the oracle – ie suggestions from wise friends, we went with our bank (who already provide us with an annual standard cover automatically) and just disclosed the ins and outs of our weirds and wonderful for a slightly less eye-watering cost that covers us world wide… bargain really!

The logistics of accommodating the varying needs of a large, dysfunctional family and ensuring everyone’s needs, sleeping arrangements, well-being, not to mention enjoyment, fun, food and safety could all be achieved (& without the budget of Croesus in the process) were significant but you know #nicerproblems# to have and all that.

Given our ASD’s son’s needs for a safe place to escape when overloaded and also just generally being a teenager, (🤢) we wanted to ensure he had his own room and a space for down time. So the right, affordable accommodation was paramount.

Eldest son H is now working and we weren’t sure if he would still want to come with the ‘rents on holibobs.

Turns out however that in-spite of us lowly oldies cramping his style, an expenses paid trip to sunnier climes, very much met with his approval! Funny that….

Given H works in the travel industry on contract, getting time off/shifts swapped to accommodate a break was like something out of the Krypton Factor and so he couldn’t join us for the entire trip.

I’ve already done my proud mama-bear boasting moment on my personal FB but just in case you missed it and also, well ‘just because’ here’s a little mini pic😊

He thought he could *probably* come in the car with us. He couldn’t…..whether he wanted to or not… I flatly renounced any such suggestions. We genuinely didn’t have the seat space or rather luggage space. The car being a 7 seater was neither here nor there.

In actual fact, I can’t help feeling that he rather got the best end of the deal: no long & ardous 2 full days of driving (& boat) journey to contend with, no smelly cooped up car with fractious siblings (& even more fractured parents); merely a solo 2 hour flight in blissful air con before arriving, unflustered in Nice. Nice in Nice and all that…. 🌝🌞

I’ll spare you the ennui of a day by day, blow by blow account of the DNTW’s vacation extraordinaire (almost as enthralling as looking at other people’s holidays snaps right?! 😉) but suffice to say it wouldn’t have been an “us” holiday without hospital trips… yes that’s right. Trips plural.

Surprisingly, the child I thought most likely to test-drive the French medical system and give my school-girl French a run for its money, behaved herself.

However, I was more than slightly out of my comfort zone when having to liaise with the French emergency and medical services for 2 of the rest of the gang.

It transpires my ’comprehensive’ French knowledge of menus, food stuffs in general, encore du vin (more wine!) and where is the toilet/library phrases memorised from school weren’t terribly helpful or useful. In fact I think the alleged (possibly apocryphal) Hungarian phrase “my postillion has been struck by lightning” (in French) would have been more helpful than what I do know of the French medical terminology.

Nonetheless, I attempted my best “Franglais” and despite murdering the language of lurve, (I never really thought I would fervently wish I had studied French tenses in greater detail but turns out I was wrong) some Gallic shrugging, frantic gesticulating and resorting to google translate as well as stick drawings, I made myself (sort of) understood; enough anyway that the right areas of my children’s’ anatomies/difficulties were attended too on both occasions. I think I probably gave the medics a bit of a giggle at my expense too…. intended to ask if I could sit but actually suggested I was a plate… I blame too much sun, shock & being very tired for that one and anyway, ‘assayez’ and ‘assiete’ are quite similar 🤔

Fortunately it transpires that the words for ‘jejunostomy’ and ‘autism’ in French are essentially much the same, although they sound decidedly more exotic and sexy en francaise. Pathological demand avoidance and sensory processing disorder don’t however seem to translate…. 🤷🏻‍♀️

In any event the care we received from our European brethren was par excellence, albeit if I hadn’t already appreciated our marvellous FREE at the point of use #NHS# as much as I do, I definitely would have done by the time we proceeded to the billing department.

Much like the UK, the French medical system do have a duty of care to provide emergency care irrespective of your ability to pay but they are VERY quick to demand your passport & health document details and even if you possess an EHIC ( https://www.nhs.uk/using-the-nhs/healthcare-abroad/apply-for-a-free-ehic-european-health-insurance-card/) you may find you are presented with a bill immediately.

It does however have to be said that for the care we received – ambulance trip by 3 emergency personnel, urgent care access, paediatric emergency Doctor consult, 4 xrays, resulting antibiotics, wound care and dressings – the resulting €92 bill was very reasonable… and perhaps something that given the dire status of our health system and the amount of “health tourism” that seems prevalent in our country, something that needs further consideration in good ole Blighty.

We didn’t get presented with a bill for our “Second day out with the emergency services” away day when we checked out; maybe it was my presence of mind to thrust the EHIC document straight at them BEFORE actual treatment took place or maybe due to the comprehensive nature of tests that were required, they took pity and felt presenting me with an eye-watering invoice might also necessitate an ECG of my own but I am told we will receive it in the post….. I won’t hold my breath for obvious reasons!!

One bizarre observation I will venture: when sitting in French Doctor/hospital waiting rooms, it transpires it is necessary to greet all those who walk in and out with a chirpy “Bonjour” or smiley “Au revoir!” How mad is that?! They don’t do the politely British thing of ignoring each other at all costs, eyes down-cast, studying the floor and hoping no one in your immediate vicinity is Ebola carrying when they cough & splutter into a hankies. Non! There is a lot of eye contact and even some bisous (kissing) when they (presumably) know each other. Another good reason to have nothing to do with trains in this post – if they greet each other like this at the Doctors, I can’t even imagine what they get up to on locomotives – definitely not the British way!

Thankfully, the vast majority of our holiday was a break away from all things medical (aside from the standard doling out of pills, lotions, potions & generalised care the kids necessitate day to day) and whilst I wouldn’t necessarily go as far as to say it was relaxing, it has been great to enjoy time together, sun, sea, days out, pool days, ice-creams, the odd Kir-Royale 🍸 (or 3) here and there and a last hurrah with the younger 2 at DisneyLand Paris.


Pre Thunder Mountain…. there weren’t quite such good spirits after 🤣

So now we are returning home, no doubt back to an enormous pile of bills (maybe the French hospital one will have beaten us home?!) laundry and lord knows what state the house will be in as the older 2 have been home without us over the last few days…. But we have suntans and smiles and precious memories and that makes it all worthwhile

.

In the blink of an eye(roll)…

It’s arrived. I always knew this day would come but I don’t think I expected it to be so soon. 😫 Or so sudden.

It probably wasn’t – that sudden – but it feels smack you-round-the-face-excruciatingly-so-upon me. Sigh.

I thought I had years to go, many more eye-rolls to bear (how exactly can one, fairly diminutive 10 year old convey such soul-churning disdain in a mere upward flick of one perfect eye brow and simultaneous roll of said eye-balls?!) but in the way of the cliche, time has sped up & my ‘littlest’ is not so…. well ‘littlest’ I guess. However petite she may be in stature, make no bones, this girl is growing up. F.A.S.T.

Of course as parents that’s what we want. ❣️ Of course it should be the natural progression of life and indeed, I am starkly reminded to be humbled and grateful in contrast to far too many of those we have known along the way whose children will forever remain but 4 or 5 or X amount of years young.

I’m full to the brim of love that Minx is following in the trajectory of ‘tween’ girls the world over, especially given the at times mixed prognosis of her youngest years and some of the curve-balls she has thrown at us latterly. I think really she just wants to keep us on our toes, never a dull moment and all that. But at times: whoosh, a sucker punch to the gut.

I digress. What has ‘come’ that I alluded to at the beginning of my rambling?

ATTITUDE!

In spades. Big time.

I shouldn’t really be surprised I suppose. She comes from a long line of family members who know how to speak for themselves, fight their corner & generally not take ‘no’ as a complete sentence. (No finger-pointing please!)

Secretly a (very) teeny tiny part of me is enjoying this new territory, the minefield to navigate of what she will wear, what is sartorially appropriate (or not, depending on which one of us you are speaking to!) the determination to do it (or not) her way. But by Lordy, it is tiring at times! And the girl can argue….

Minx embracing “Break The Rules Day” at school recently

Gone is the elfin child so pretty in a plethora of pink & purple, ribbons and sequins , frothy trappings of Monsoon, Accessorize et al. Replaced by a love of glitter but of the sparkly eye-make up variety – the contents of MAC shop, Urban Decay make up or a bath-bomb (or 5) Her clothing choices now consist of darker hues, bigger and baggier, less ‘girly’ more quirky and sassy.

When she said she wanted to ‘go to the theatre in tattoos’ this wasn’t quite what I had in mind….

In place of the (long past) nursery rhymes, Disney tunes and Nickelodeon, a fascination with Billie Eilish, weird-pranking You-tube families, LD shadow Lady and Roblox (parental controls on) has emerged. She spends hours watching make up demonstrations or bizarre things you can make out of recycling crisp packets, how to make tiny working copies of day to day stationary – one inch perfect replica glue stick anyone?! 🤔

In a rehash of my Dad asking me what on earth I could possibly need to speak to my school friends so urgently about given I’d only been out of school for an hour and off the school bus for 10 minutes max when I rushed in from school to pick up the phone, Minx /bounds (*slightly* too strong a word . usually knackered after school but you get the picture) straight to her bedroom, door firmly shut before she giggles away to her friends via face-time or school group chat. The peels of laughter, the loud shushing and use of code-words (and shouting) if someone inadvertently enters her room without knocking (I’m looking at you here Big Brother G!) as well as the general disarray of her bedroom (despite my best efforts) all serve as reminders that my affectionately known little Millie Minx is maturing.

I’ll admit to slight trepidation, a bit of panic. I’m not ready for my little girl not to want me or need me. I’m not ready to stop kissing the top of her head & inhaling that fresh-from-a-bath-scent before she goes to bed (or the sweet-not yet-sweaty-smell when she wakes of a morning) I like still reading bed time stories, the books I loved as a child.

Since Minx is the youngest of our children and there are most definitely NO plans to have any more, I’m unsure whether my reluctance (fears?) stems from that letting go of the ‘baby’ stage or whether it’s down to the medical issues and difficulties she has faced (& will continue to) in the years to date; somewhere between the 2, I suspect.

But importantly, most importantly, she is ready. Wanting to strike out on her own, arguing it’s fine to go out in just a t-shirt & cropped leggings despite it being single figure temps outside (Mum: I’m sorry I remember us having those arguments when I was her age! 😫) her Dad asking incredulously if we had actually paid good money for the jeans with the rips in and why we couldn’t just slash some of her other things with an artfully wielded pair of scissors.

I’m reminded of that beautifully written, perfectly summed up quote from Nanny McPhee but I think it’s rather more for my own benefit now than hers:

#Parenting Advice 101#

And without going over all Darwinian/survival of the fittest, over the years I’ve been privileged to be a mum (& I’ll be honest, there are many many moments it hasn’t felt like such a privilege!) I’ve come to the conclusion that the very best you can hope for if you have done a reasonable job of parenting is that your child(ren) will have confidence enough – ideally in leaps & bounds – in their own abilities to strike out on their own; that they will seek to carve their own way, flee the nest to live their best lives and all that jazz. That the mistakes they will inevitably make are small enough to learn from but not big enough to endanger/hurt or ruin life (theirs or another’s) and that is more than enough **

Offspring however, if you are ever reading this: a visit to your old mum & dad in their dotage, the occasional cup of tea and a desire to spend some time in our company that doesn’t involve gifting you data/food/money/combinations thereof , wouldn’t go amiss….

*Either that or you’ve fu#*ed it up so badly, they have fled for the hills at the first opportunity. Cold comfort. You’re welcome. 😉

3am Eternal….

It’s 3am (actually it’s not as I write this, it’s more like 8pm but the thoughts that led to this blog post pinged into my head at 3am & hoping to eventually get some semblance of sleep, I declined to let the brain-fart creative juices run riot)

3am. In the days of my ‘yoof” it meant something quite different to where I find myself now: 3am might have been when I rolled through the door, perhaps *slightly* tipsy; 3am giggling chats with my school or uni besties; where we had face-packs & chocolate (& revolting White Lightning Or MD20/20 in the latter years) and shushed each other in overtly loud whispers.

3am Eternal, that absolute belter of a tune by The KLF with their ancients of Mu Mu! Now I have an ear-worm & find myself mentally humming. These days if I had the budget, I’d rather like to be more in tune with the Mui Mui (fashion darling!) but that’s another story…

3am now: when the rest of the world is sleeping. When all is quiet. When you feel alone, scared and any problem(s) you have feel insurmountable, all consuming and impossible to solve.

Ironically, I’m far from alone. I’m on a children’s hospital ward where 3am doesn’t mean all is quiet and settled. It’s an alternative, less pleasant version of a city that never sleeps.

Whilst the nursing staff go about their business calmly and efficiently, even if (when) the dreaded crash bell sounds or alarms from machines and monitors peal and squark; the heart-tugging cries of babies and children in pain or scared There is both an urgency and yet serenity of those on duty in these darkest hours.

We have a 3am visitor. A surgical resident called up to our ward because Minx isn’t behaving. Anatomically speaking.

  • 3am is when my imagination goes into over-drive. I’m over come with the ifs, the buts, the maybe’s; the pointless worries and the unhelpful questions that come unbidden when you’re a parent, and especially the parent of a medically, physically, cognitively or combination thereof child/ren.
  • In reality of course I know I’m far from alone. Wherever it’s 3am, there will be a multitude of man-kind engulfed by their own demons, be they parents or not. Those worrying over relationships, financial matters, jobs, mental health issues, where their next meal is coming from. I’m sure Dear Reader, you can add a plethora of reasons I haven’t listed.
  • I can add guilt to my annoying bed-fellows who hover sadistically at the 3am party. For however many of the worries my brain attempts to rattle through, I know I’m one of the ‘lucky’ ones.
  • I’m reassured by the surgical resident’s breeziness, by Minx’s visceral reaction to his proposal if matters don’t sort themselves out; even groggy from the after effects of surgery and the powerful pain medications pulsing through her, she is not one for rolling over and playing easy. She is not in favour of his plan and whilst a part of me knows that ultimately we may have to adopt the cruel to be kind approach, it is heartening to see she is strong enough, with it enough, to protest and rail against it.
  • So whilst I may wonder at 3am how I will ever juggle all the varying needs of my children, if I remembered to order medications, feed, equipment & supplies; did I send that email, reply to that message, make that all important phone call, at the very least I am fortunate to have those worries; the luxury for want of a better word to fuss and fumble, curse and sigh about all the never-ending chores.
  • I would take that in a heart-beat over the emptiness, the silence, the agony of losing a child. There are friends, far too many dear friends, who deal with that hollowed out grief. Who lie awake at 3am with the eternal knowledge that never again will they hold, sooth, cuddle or fuss over their cherished child. Who would give everything they had and then some to be in my shoes, (slippers) right now.

    So when I’m feeling overwhelmed and exhausted with it all, I will remember that in reality, I am one of the fortunate ones & banish those unhelpful spectres back where they belong. Dawn will come one way or another and the 3am fears will recede. We will fight on another day. ❣️

    The Trigger…..(Pull it)

    Recently for reasons that as yet I cannot divulge (I promise there is a blog post coming on this as soon as I am able; apologies for the cloak and dagger tactics. I’m not one of those “u ok hun?” PM/In box me” type people honestly!!) I have recently had to write an explanation of what led me to my break down almost 2 years ago. The account needed to be factual and pragmatic; the irony of trying to keep my feelings out of it when dealing with something so fundamentally, emotionally driven as a suicide attempt was not lost on me.

    Although I will (if asked) talk to close friends and family about what led to my attempts and breakdown in mental health honestly and forthrightly, it doesn’t mean there isn’t shame; that there isn’t guilt and that there aren’t things that I (still) hide. There are somethings that are so deeply personal (buried?) that I don’t think I’ve even allowed myself to explore them.

    In writing down the what’s, why’s and wherefore’s, its dug up a lot of suppressed memories, pain and feelings of helplessness, at a situation that was not of my own making. That’s not to say that I want to palm what happened off on someone/something else. I accept responsibility for want of a better word for the actions I undertook. However I reached that point where checking out seemed the only option to change what was going on around me.

    It occurred to me as I typed the details up that it was triggering a lot of emotions even though I wanted to be concise and almost 3rd person in my approach. And I as thought about that word “trigger,” I realised that summed up my entire experience of a mental health breakdown. Seems obvious I suppose. I don’t know – I can only speak from my personal situation.

    Suicidality  springs from a myriad of wide and varied causes;  I am no expert. For some it may be a single one-off event that causes the person to experience a sudden mental health breakdown (personal/financial/status loss spring to mind) for others something that happened in their past (abuse, specific traumatic one off/repetitive  event) which cannot be overcome.

    For me, it came about insidiously, through a relentlessly relentless piling on of pressures and this too is of course acknowledged as a common cause. I guess for me the idiom “at the end of my rope” has more connotations than just being at the end of one’s patience. Apparently the original source of this expression relates to tethering an animal to prevent it moving and wondering off beyond a certain distance.  Personally, (in a somewhat grimly, ironic humour) I thought it meant at the end of the hanging noose knot….

    My first suicidal ideation was triggered by the repeated use of the word COPE. An innocuous little word that is used to describe so many situations. As a parent carer of children with special needs, it’s not uncommon for others to utter “I don’t know how you cope!” This is something that I know many of my fellow parent carers  or carers in general will be nodding along with.

    Carers are often seen as saintly like figure. A cross between Florence Nightingale and Mary Poppins perhaps? Truth is, very few of us chose this life. The role chose us by circumstance or default.  I know there are some utterly inspiring carers out there who did actually choose to foster or adopt children with special needs (and thank goodness for them) to prevent little lives being institutionalised without families of their own.

    There are also those courageous individuals who when embarking on their journey of parenthood were given horrifying, frightening, diagnosis for their unborn child and yet chose to bring life into the world knowing they were doing so against the odds; that they  would do their utmost to love and cherish their child, no matter what. Other parents have had to face a child being diagnosed with cancer, degenerative or congenital conditions out of the blue or as a result of an accident or injury.

    Of course later in life more and more of us are facing the hideous reality of dementia in family members. Those with grandparents and harder still, their own parents or siblings who they see deteriorating in their day-to-day abilities; losing their independence and all too often a decline in mood, personality and recognition of their own nearest and dearest. Very cruel.

    Whichever way it comes to be, caring for someone isn’t something you get a medal for. There isn’t a huge amount of reward  – certainly not monetarily. If you can show that you provide care for someone receiving  specific incapacity benefits for over 35 hours per week and you earn under £123p/w (as of April 2019) from other sources of income, you can enjoy the princely sum of £66.15p/w (also April 2019) for the ‘privilege’ of being a carer. Even based on 35 hours per week(and the majority of carers I know ‘work’ substantially longer hours than that; 24/7 for many)  that equates to just £1.89 per hour. Wow. Best not get me started on that. A ranty blog post for another day no doubt.

    Anyway I digress. The point I’m taking a long time to get to is many carers ‘cope’ because there really isn’t any other alternative. And those of you who say you couldn’t? Well you would. If you had to. At least for a period of time.

    There are (too) many days I feel like sitting in a corner and rocking. Many days I wonder how I’m going to make it through the endless medications, physiotherapy, appointments, hospital visits and dealing with the practicalities and physicalities of caring for children with extra needs. Don’t get me started on the relentless laundry pile that never seems to go down, the food shopping and meal preparation that are just part and parcel of every day life in a busy family and I know I’m far from alone.

    But the point is I do – cope – I mean, generally speaking. It isn’t a life I chose but equally my children didn’t ask to come into the world with neurological,  medical and/or physical difficulties either. So I get up, I keep going, usually with a grin (maybe a grimace) and somehow it all vaguely fits together, we get to the end of each day with perhaps only a modicum of sanity and no clean school shirts for the next day (Febreeze anyone?!) because it’s the only way we carers know how too.

    There isn’t any one else out there to pick up the slack. Unless you are in the fortunate (and probably) unlikely position to be independently wealthy, the majority of carers get on with their role because they have to keep on keeping on. No one else is going to be there to pick up the pieces (or socks) if they don’t. No white knight (or even vaguely grimy one) will rush in where others fear to tred.

    So back to that pesky trigger of mine. What’s more frightening than ever is it’s not just carers that struggle to COPE. Unless you have been hiding under a rock, you can’t have failed to notice the inadequacies in the health and social care system caused by austerity, lack of (meaningful) investment, candidates and poor morale. The system itself has reached breaking point.

    The working conditions are sending droves of medical professionals overseas where they will have a better work-life balance and better remuneration. Fewer than ever medical students want to take on the role of General Practice and more GP’s than ever are planning to retire early. Figures released in July 2018 showed 1 in every 6 GP positions were unfilled leaving almost every surgery across England at least one Doctor short.

    Mental health services have also suffered hugely and in real terms, whilst there were expansive (and expensive!) promises given that funding would increase broadly in this area (£2 billion was pledged by Phillip Hammond in October 2018) in reality the fall in in-patient beds has led to those in crisis being sent hundreds of miles from home, away from their nearest and dearest which can, at least in my experience, only create more hardship. The inability to access timely, regional in-patient care is not just inadequate but dangerous. The focus on out-patient/community based care is of course welcome but it is not a replacement for those battling psychosis, severe depression, eating disorders and such like, especially when either the beds aren’t in familiar environments or worse still, available at all.

    Locally Harrogate Hospital plan to close the adult mental health in-patient unit at some as yet unspecified date in the future (rumoured to be later this year) and I for one will mourn this loss. Whilst I hope never to need in-patient services again, I made and have retained a very special  friendship with a fellow MH warrior. We often share some  deeply inappropriate, darkly humourous moments that unless you have experienced a mental health crisis, just wouldn’t be appreciated by  nearest and dearest.

    I am forever changed by my own break down experience both in good and bad ways. I have learned my tolerances are much lower than before so whilst I’m in an *ok* place much of the time, it doesn’t take much to alter that kilter and send me spiralling to darker places. But I have also learned I am stronger than I thought it was ever possible to be, that I can ‘cope’ with most of what life throws at me and that will do… for now

    The sky’s the limit…

    I make no apologies but I am going to be *that mother* – you know the one that clogs up FB (& therefore anyone else who reads her posts, unless you have set me to silent or similar!) with proud, perfect first born posts & rambles to anyone who will listen how talented/amazing/Einstein’s veritable protege etc her child(ren) is/are.

    Bare with me on this one though ‘cos I really do think I deserve (well not really me as such but I’ll get on to that bit in a minute!) to have at least 5 minutes of proud glory hunting on H’s behalf.

    There are so many reasons I can wax lyrical about H’s virtues: the love and support he gives to all his siblings, (and us of course) the practical care he has voluntarily been trained in to provide for Minx so he can give medications via her gastrostomy, set up her pump feeds (and now G’s too) and aid and assist with various other aspects of personal care; his verve for life, his 100% commitment to anything he puts his mind too, his enthusiasm to embrace every day no matter what it throws at him, volunteering for the local Young Carers; you get the picture: I could go on ad nauseum.

    However, the last 2 weeks give me even more reason than normal to shout from the rooftops: H started his private pilots flight training on Monday 23rd July 2018.

    On Thursday 26th July 2018 he did his very first air-flight – SOLO!!! Given that he’s only ever had a trial lesson aged 13 prior to this, I think that’s pretty bloody impressive!!! So shout it from the roof tops I will 😊

    Just call me Maverick! No first day nerves – Well H didn’t but I did!

    From a very early age, H demonstrated a love for all things plane related.

    Not necessarily surprising given his Dad’s job (airline pilot for those who may not know) and watching him hero-worship his Daddy flying his little die-cast planes through the sky at death-defying angles, accompanied by lots of engine nnnnnneeeeewwwwaaaahhh type noises (apologies for very poor sound description!) was very sweet.

    By aged 3 he could identify most aircraft in the sky or at an airport with spectacular accuracy and had a vast collection of little plastic aircraft models on display stands from various different fleets. Very fragile, a nightmare to dust around and definitely not compatible with younger siblings clumsy hands!

    He could fly the simulator on our home computer and his idea of a top day out was sitting in Jersey Aero Club watching planes coming in and out of the Island for hours at a time.

    Stealing Daddy’s safety tabard for doing aircraft walk round!
    Captain Beaton & First Officer La-La at the helm

    Since the age of 4, he’s talked about being a pilot. Initially we responded with a laugh; how many of us said things when we were pint-sized about future occupations and how many of us actually do those particular jobs? As far as I can tell the world isn’t overrun with spacemen, nurses, ice-cream taste testers et al (Incidentally Mr DNTW’s wanted to be a dustbin lorry driver or the night porter on a sleeper train!) Over the years however, H’s convictions only grew stronger and 3 or 4 years ago, recognising that he was serious, we began scrabbling down the back of the sofa for the purported thousands that Brits are supposed to have scattered in loose change (I suspect this is collectively as I only found about 2p, a chewed piece of gum no doubt stashed by one of the offspring for safe-keeping 🤮 and a partially eaten nerf bullet)

    The sofa search having proved fruitless, I went to investigate the mystical money tree that lives at the bottom of the garden. Alas, there’s a straggly looking bush and a peeling- paint-bit of fence but nowt else.

    We started looking at flight schools more closely and after I had scraped my jaw off the floor cognisant of the fact that it’s very unlikely we have a spare £100,000 + just waiting to be spent, H and hubby had more serious discussions and investigations as to how H could realise his end goal of becoming an airline pilot.

    The plan is for H to train just like his Dad did: get a job in the real world to pay for exams, flight training, hour building etc over the next 2-3 years. It’s not the easiest route but it’s a considerable saving on dedicated flight schools and his sense of achievement ultimately will be enormous.

    H has also been extremely fortunate that due to the generosity of grandparents he’s able to do a ‘crash course’ (definitely not a good choice of words but can’t think of a better one!) and do his private licence over a month this summer. He’s taken 8 of the 9 ground school exams, passing a number with 100%.

    Given that between revising for a-level exams he read through the 9 tomes of aviation law, navigation, radios, meteorology etc for ‘fun’ and relaxation, he’s already showing dedication and determination beyond his tender years. (NB, have made a note to talk to him about his understanding of the word fun!)

    Already in the face of adversity, H has had to overcome some hard times. Last September when undergoing his very important application for a Class 1 Aviation medical, he very unexpectedly hit a huge brick wall: despite being merely 17, seemingly fit as the proverbial butcher’s dog – he cycles regularly, goes walking for fun(!) and hikes in the Dales, tests showed an issue with his heart.

    Initially he believed it was an error on the machines part (youthful exuberance) but further investigations revealed a progressive heart condition. He was devastated as were we.

    No amount of consoling that at least this had been detected early could reassure him. For H, it potentially meant the end of his dreams in pursuing a career in aviation

    As a mother, all I could think was how, why and what happens now?? Your heart is a *fairly* important bit of kit….

    The cardiologist we consulted was excellent and there followed a round of extensive medical testing to find out how serious things were (are). Sleepless nights for me at least whilst we waited for results.

    The good news is that whilst the condition is progressive in nature, he should have years ahead of him, symptom free.

    He will be regularly monitored and scanned and eventually medication will control the symptoms. Based on present medical knowledge he will at some point need surgical intervention but we are talking far in the future and with medical knowledge, procedures and equipment evolving at lightning speeds, who can say what the future will bring.

    Nonetheless, H was rejected for a Class 1 medical and caveats issued alongside this meant he couldn’t even pursue a private pilots licence. H has always been a positive person but this knocked the stuffing out of him.

    After taking time to let the news sink in, we decided not to take this as a fait acclompi. H and Mr DNTW’s consorted with aviation medical and legal experts.

    I’ll spare you the ins & outs but it became apparent that if this hadn’t been H’s initial medical licence application, he could have been issued a licence with restrictions (no flying with anyone over 65 or a fellow pilot with medical restrictions) so effectively, the refusal to issue his licence was penalising him for something that hadn’t happened and was/is unlikely to be an issue for many years to come!

    As ‘luck’ would have it, another would be pilot had been declined his medical for a different condition for issues that are unlikely to be problematic potentially ever. He was in the process of pursuing his case at the court of human rights.

    The Civil Aviation authority agreed to concede before it got to that level and thus opened the floodgates for others in similar situations. H was advised to appeal the decision and after a nail-biting few months he was issued a licence with restrictions.

    He is under no illusions that this does complicate matters a little but if air travel and the airline industry continues to expand as predicted, there will be a shortage of airline pilots in the years ahead. (Brexit of course is an unknown, unquantifiable potential source of concern – & not just to the Government! 😏)

    So H has made the decision to pursue a flying career and if all goes as it should will have achieved his private pilots licence in the next 2 weeks!! Eek.

    As I type, H is preparing for his last exam, another day of navigational flight planning and cross country flying. He’s earned his first set of ‘stripes’ – epaulettes – and is proving that he’s a force to be reckoned with!

    First ‘stripes’ … a while to go yet before the airline version First Officer, then Captain someday?

    I have no doubts that H will achieve his goals professionally and personally in the years to come because of his hard work, determination & drive to always do his best. Now if only that could also be applied to ironing his uniform…..❣️

    Comfort food or food to comfort?

    Today has been a bit 💩 I’m not going to lie……
    We had to be Chez Hotel NHS Harrogate bright and early this morning for a date with radiology following G-Man’s “discussion” with a fire extinguisher on the last day of term. For the avoidance of doubt the fire extinguisher won & once again G and the NJ parted company. 😫
    Given that it happened late on a Friday and from past experience of the difficulties this causes, I didn’t bother to contact anyone medical until yesterday. But I got sneaky this time and bypassed the ward, going direct to G’s pediatrician.
    Recent visits to replace the NJ tube have been traumatic and getting more so each time. G has borne this bravely but enough is enough. The last experience left us all traumatised.
    I don’t use that word lightly but given the radiologist said we were going to have to abandon the placement due to the levels of distress and G effectively withdrawing consent, I knew we needed an alternative approach.
    I have asked in the past about some kind of amnesic inducing drug or light sedation and been berated for wanting to “drug” my child. However, the medical bods eschewing this approach only see a snap shot of my child for about an hour and usually aren’t in the room when the procedure is being carried out.
    Nor do they deal with the longer term fall out, the increasing hysterical approach to anything medical, the begging, pleading and promises he will be good, eat more, try harder; listening to this I defy anyone without a heart of stone not to be affected and I feel huge guilt. How do I reinforce this isn’t his fault?!
    At CAMHS appointments I listen as my child pours out his feelings of helplessness in the face of such procedures, his loss of rights over his own body and the feelings that he is not being listened to or even heard. And I question if it is right that he is put through this but we are left with little choice until a long-term solution is found.
    The radiology department are giving me increasing (well-intentioned) grief about the risks of his repeated exposures to radiation. I am told that each time they have to replace the tube in this manner it is the equivalent of undergoing a CAT scan in radiological terms. I have lost count of how many times the tube has had to be passed since it first went in in May and with no end game in sight, I am mindful we are potentially creating a different set of problems.
    So I threw myself on the mercy of our wonderful pediatrician, pleaded our case and to my immense relief, he immediately agreed and to save me having to battle and negotiate, liaised with the ward directly so that all we had to do was show up in the right place at the right time.
    There was the occasional raised eye-brow from a clinician TRIPLE CHECKING I definitely wanted to ‘DRUG’ my child but I think the steely stare and unwavering gaze assured her I wasn’t going to be persuaded otherwise and from there on out, G was treated with the utmost care and consideration and after the usual shenanigans of weighing, measuring, a gazillion questions, signing of consent forms, he was popped on a monitor, given the maximum dose of meds and was soon off his face, happily rambling utter nonsense.
    Truth told it was quite entertaining listening to his diatribe; apparently he was flying himself down the corridor, nothing to do with the trolley, porter, myself or the F1 accompanying! If it hadn’t been for his reaction to the taste of the medication, (lots of spitting and cries of DISGUSTING) I might have tried a cheeky request for some myself.
    I’ll spare you the ins and outs but it was so much easier and kinder to have the tube passed this time round.
    There is only one specific radiologist who can carry out the procedure and we are on first name terms now due to G’s frequent flier status! I know the names of his children, that he was born and grew up in Jersey just like me and that he’s off on holiday shortly so it was particularly hilarious listening to G shouting “Dude, stop that, why’s he shoving things up my nose Mum?! Dude seriously stop doing that, don’t look at me. NONE of you, face the wall! Why are you laughing?!”
    The best way I can describe the procedure is like watching someone rod the drains. My apologies to all medical people and specifically the radiologist concerned who no doubt trained and worked exceptionally hard for many years. To compare his skill and expertise to dyno-rod seems rather unfair and very dismissive!! But there is a lot of see-sawing of flexible tubes and guide wires, pushing, prodding, twisting and turning till eventually the sucker ends up in the right place!
    One hour later procedure complete, G still high as a kite, we were able to go back to the ward and let him sleep it off! He rambled and raved like a caricature of a Hollywood movie ‘drunk tank’ extra but he was funny and (mainly) charming and most importantly didn’t remember a thing when he eventually came round and found his tube safely back in situ. I count that as a definite win!
    Of course it would have been nice to be able to contact loved ones and let them know all was well but my phone and internet seemed to be playing up. I had received a mysterious text telling me I needed to make a payment to our phone provider and reacted with dismissal knowing that Mr DNTW’s has every thing set up on a brilliant contract where we get oodles of data, texts, unlimited calls etc. I assumed it was just my phone (or me!) playing silly beggars.
    But when eldest son contacted me on messenger saying he couldn’t call or text and could only use the internet when on wi-fi, I knew there was more to it. Still I assumed the network was probably down.
    Several hours later, when his nibs was back in Blighty, he messaged me to ask if there was a problem with my phone and that’s when began to wonder if there might be a little more to it….
    Child number 2, J, has been home for the last week. He’s our fabulously witty, dead-pan humoured, technology wiz with a knack for circumventing every manner of parental security and or block we have ever put in place. He has what was called aspergers but now changed to high functioning autism (don’t get me started). I tentatively mentioned the issues we were having and his face changed….
    £448 worth of bill later, we know what the problem was/is!!! Suffice to say J was mortified and Mr DNTW’s after a few ‘effs and jeffs” spoke to our mobile provider, explained what had happened and we are extremely grateful to their management team who were so understanding and agreed to refund the excess charges. Big up EE!
    So despite having left the house by 8am, not getting back till 3:45pm and feeling pretty drained all round, I felt the need for comfort food. Despite the fact that current air temp even “oop north” is on a par with the surface of the sun, I decided we needed a family roast with all the trimmings. A large portion of roast potatoes, chicken, lashings of gravy, Yorkshire puddings and veggies later my sense of equanimity is restored!
    It is only with a slight sense of irony that I reflect we have 2 tube fed children and one with food-sensory issues but nonetheless by small miracles, everyone ate at least something of what was put in front of them; apart from yours truly: I ATE all of it and then some…possibly double helpings……sssh! Don’t tell….. x
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