6 Go Crazy On A Socially Distanced Adventure…*

* a very dreadful homage to all things Enid Blyton to hopefully offer some light-relief in these challenging times….

The 6 DNTW’s have been holed up together under one roof for less than 72 hours and the wholesome, ruddy-cheeked (feckless) children are clearly feeling the strain. As are their parents.

After a mere 2 & 1/2 days of home schooling, Mr DNTW’s could be heard enquiring at what age teachers are legally allowed to retire and Mrs DNTW’s is contemplating ingesting the hand sanitiser that her very lovely, witty and glamorous (also childless therefore explaining the non-haggard visage and aforementioned glamour!) friend sent her in the post because she has read they contain alcohol.

In a time of national emergency surely it is obvious that both should be drunk not rubbed on one’s hands?! (In the interests of health and safety please don’t!)

Mrs DNTW’s knows she should be very grateful that she has thoughtful and lovely friends who think of sending her such precious things like alcohol flavoured hand-gel in these desperate times but right now she is wondering if she can drink the contents as they do in fact contain actual, REAL alcohol. She also feels it desperately unfair that Mr DNTW’s has refuted her suggestion of sacrifice that she consumes hard liquor and remains 70% proof at all times because apparently an alcohol content above 66% is necessary to effectively kill off bacteria and she is trying to protect herself from the dreaded “C” word so in turn she can nurture her family.

Unusually given the vocabulary of child number 2, it is not that ‘c’ word that she is worrying about for the time being, nor is it the BIG C but it is definitely a very unpleasant C which shall not be mentioned herewith 🦠

It is likely that Mr DNTW’s is not thinking of the health and well-being of his wife in pouring scorn on her proposal but is rather more concerned he will be asked to aid in the SPAG (spelling punctuation and grammar for those not in the know) work that has been set as part of the home-schooling curriculum by actual teachers who are laughing delightedly and rubbing their hands with glee hand-gel at those contemptuous parents who spout such nonsense as:

“huh! 6 weeks off in the summer! They should know what hard work is really like!”

In her defence, Mrs DNTW’s would very much like it to be known that she has never been one of those smug and belittling folk. In fact she thinks that anyone who has voluntarily and willingly decided, (not to mention paid out horrifyingly large sums of money for the privilege of doing so) to nurture and cherish young mind’s – other people’s children (Sartre’s quote “Hell is….?!”) – should probably be sectioned canonised.

Mrs DNTW’s has tried to instill a respect for authority, foster a love of learning and an oasis of peace and tranquility in the classroom that was once her dining room.

In truth she wasn’t very successful imparting these qualities to her older children in the past so it is unsurprising that the younger ones reject her request to answer the register, greet her politely with “Good morning Mrs Definitely Not The Walton’s” and yell “Oi Karen and BOOMER” at her periodically. Mrs DNTW’s wonders whether telling her precious off-spring that they will enjoy working in 45 minute blocks with 15 minute movement and snack breaks might have been a tad ambitious and perhaps it should have been the other way around.

After Mrs DNTW’s has spent 20 minutes surreptitiously consulting her phone for an explanation of fronted adverbials, preposition and sub-clauses, she wonders whether she ever learned anything at school all those years ago.

She and child number 4 finally crack on with the questions relating to the Harry Potter themed English work and she has been designated scribe because Minx’s hands are tired, despite the fact she has only held the pen doodling. Mrs DNTW’s is dismayed to find that they are only on question 4 and they have already spent an hour arguing over whether Hermione would have had an easier time at school if she had learned early on about the beneficial properties of argan oil and serum for frizz-prone hair.

Child 3 has left the room and embarked on his designated movement break, disparagingly retorting that it is his right to leave after 45 minutes whether he has finished his French set piece or not.

His movement break seems to have incorporated a trip back to the bedroom on to his X-box and when subsequently summoned to return, his dulcet bellows of “I just need 5 more minutes to finish this match” ricochet off the walls from the 3rd floor all the way down.

This prompts Child 2 who is “self-studying” in his room to angrily fling open the bedroom door, music blaring from the dark, fetid cave-like dwelling to announce he cannot possibly get anything done with such inconsiderate shouting around him and he needs to assume a horizontal position on his bed, encased in a furry dressing gown until at least an hour of order and tranquility has been restored. Fortunately Mrs DNTW’s is wise enough not to engage in that battle and beats a hasty retreat.

Child Number 1 who actually left school several years ago and under usual circumstances would be at work, is also now confined to barracks until further notice. He chooses this time to grace us all with his presence and wonders down to the kitchen, bleary eyed, whereupon he opens the fridge door and gazes in forlornly until the beepy noise kicks in. With much dramatic sighing on his part, there is opening of multiple cupboard doors, also the freezer and trips back and forth to the garage for essential supplies. Mrs DNTW’s informs him that “no we don’t happen to have any lovely part-baked rolls, fluffy pancakes, nor lashings of beer, ginger or otherwise” to meet his brunch criteria.

Children 3 and 4 return to the dining room class-room and survey the bits of paper, pencil sharpernings and crumbly bits of broken rubber that seem to be peppered about the place despite Mrs DNTW’s not having witnessed any usage of items that would give rise to these annoyances. Mrs DNTW’s sighs and wonders weather by some form of stealth osmosis her dining room is absorbing waste matter from the many dormant class rooms scattered over the UK, indeed the rest of the world as the “C” word holds us all in captivity. In fact come to think of it, she notices that the room seems to be giving off an aroma most usually associated with the lingering scent of school dinners, pine disinfectant, sports lockers, lynx and farting. She makes a mental note to add Febreeze to her online shopping order which is scheduled in the earliest available slot, 9 week ahead.

Perhaps Child 1 is responsible for the odours as whatever he is doing in the adjacent kitchen (the door between is firmly closed) requires a lot of banging of saucepans, running of taps and occasional expletives.

This reminds Mrs DNTW’s that she has not time-tabled any musical activities for her sweet darlings and after briefly contemplating hunting down the old recorders and music books, she gives her head a wobble and reminds herself why she hid them in the first place. She decides that an afternoon of listening to Billie Eilish over and over again with a running commentary from the Minx detailing the video montage and seven gazillion You-Tube quips will serve this purpose perfectly. Child 3 can make do with revising his spotify play list.

After what seems an age but in reality is only another 45 minutes, the children are getting fractious and Mrs DNTW’s is feeling mutinous as she made the rooky mistake of opening the door to let the scrabbling dogs into the class-room – (what fun my darlings, we can do a live biology/veterinary course!) and caught the scene of utter carnage and devastation that was once her kitchen but is now a scourge of dirty cups, burnt bits on the hob, crumbs everywhere and judging by the greasy paw prints on various surfaces, Child 1 has left the butter out which the bl**dy cat has taken advantage of.

Dismissing the class, she briefly contemplates hauling Child 1 back downstairs and bludgeoning him with a rolling pin until the sanctity of her once pristine kitchen is restored but decides actually that some TIME OUT from her children and some vigorous scrubbing might be good for her blood pressure and rising feelings of wanting to puncture things (including people) with sharp objects.

Verily as she has cleaned down the last surface and re-stacked the dishwasher so that it contains more than one awkwardly loaded frying pan, 27,000 cups and glasses (so the off-spring had indeed previously been hoarding them in their bedrooms after all!!) and single spoon, her little urchins meander their way back into view and piteous cries of “we are starving/going to faint with hunger and die of thirst” reach a crescendo.

Equilibrium restored, Mrs DNTW’s tells her children she is just putting the finishing touches to home-made chicken noodle soup which WILL BE DELICIOUS and nutritious.

The steely glint in her eye almost but not quite convinces the heckling mob not to argue with her on this matter. Protestations are stared down (Paddington would have been impressed at the hardness of stare) and Child 1 dishes out Tiger Bread with lashings of dairy free spread that should have fed the family for a week and been usable to rustle up a couple of cakes (for the home economic lessons naturally!) but apparently merely only feeds a man-child in the last month of his teens. This causes such a cacophony of noise and uproar that Mr DNTW’s appears from the garden looking concerned, holding something that looks suspiciously like it should have belonged in the clean laundry cupboard and possibly masqueraded as Mrs DNTW’s favourite face muslin.

At this point of reappearance, Mrs DNTW’s suddenly realises that Mr DNTW’s has been suspiciously absent for his part of the educational responsibilities of the morning and her voice reaches that steely tone when you are not quite sure if she is spitting a bit whilst talking (Mr DNTW’s is standing the requisite 2 metre distance to comply with BoJo’s social distancing policy so can’t be certain) Mr DNTW’s acts afronted and tells her he has been cleaning up the garden doing vitally important repairs and necessities that form MEN’s WORK and in fact she should be responding with gratitude and affection. Oh and could she possibly wash his trousers because he had forgotten when he embarked on the pressure washing etc that he was still in his favourite ones and not his old man’s saggy bum, paint-stained jeans. Even the children realise this was a mistake of epic proportions given her current frame of mind.

Lunch is served, after hands have been scrubbed red raw for the umpteenth time, in something of an orderly fashion. Perhaps the jewels of her eyes are cognisant that Mum is not to be trifled with for now. There is the merry clinking of spoons in bowls and Mum tries not to think too hard about her lovingly purchased-month-by-month flatware, in terms of economic-chippings-to bowl- basis for it is not really the children’s fault, she supposes, that she seems to have raised a gaggle of baboons. Clearly it is their Father’s.

The lively chatter around the table turns to afternoon activities. Mum thinks that it will be delightful and heart-warming to get out for a family walk, thus sticking to the new government rules of one daily activity in the open air, en famille and exercising the pooches all in one fell-swoop!

Mum is proud of her genius and plans to allow electronics to be used for the purpose of identifying flora and fauna in the fresh, sun-light filled air, thereby covering science AND exercise in one. Whilst mentally patting herself on the back, she cajoles the children to find suitable foot-wear and coats. The children are stunned that Mum has agreed that electronics can be taken on the trip and haven’t yet figured out that Mum has no intention of letting them listen to music with gratuitous swear-words and You-Tube clips of Yoda from Star Wars giving advice on sticks, bushes of love and Sea Gulls Stop It Now! (If you have a moment look up Bad Lip Reading quips like the gem below;it’s worth a giggle in these troublesome times)

Child 4 notes that it is sunny and despite living in Northern England and there having been a hard frost on the ground when they awoke in the morning, appears in Daisy Duke style shorts, flip flops and a crop top. Mum manages not to swear and instructs child to return to bedroom and re don the sensible leggings she had on earlier. They compromise on the crop top under a wooly jumper and weekend trainers.

Child 2 appears in joggers, 7 layers of tops, winter coat with a furry lined hood and furry boot style slippers. Mum asks him to take at least 2 layers off and put on sensible foot wear.

Child 3 is nowhere to be found and when roared for, appears from the back of the car where he has been patiently sitting, wobbly of lip and wild of eye given the baying mob that are his family yelling in such unbecoming tones. Meanwhile the neighbours are wondering if contacting the police on 101 for an ASBO constitutes a genuine emergency in the grand scheme of things, especially given the “C” word crisis.

Child 1, in spite of being the oldest, is rushing around the house, whipping the dogs into a frenzy of excitement by hurling various toys at speed and excitedly yelling for them to retrieve. The dogs are delighted that FINALLY they are being given the attention they deserve and that everyone else seems to be joining in with the shenanigans, given the through traffic that is going on with various children traipsing up and down the stairs. The cat merely narrows her eyes witheringly and hopes they will all leave very soon so she can regurgitate the grass she has eaten on the parents bed. She is feeling a tad queasy since ingesting the butter.

Mr DNTW’s is BUSY doing things that involve removing all the shopping bags from the car, re-configuring seats to get the wheelchair, dog-crate and all children ensconced within. Not for the first time he reflects that he could have had a rather nice sports car for far less aggro & probably money too. He reminds himself that he is #truly blessed# & living his #bestlife though.

Everyone is now settled in the car. Although there were fisticuffs over the calling of shotgun, Mrs DNTW’s resisted clipping child number 2 round the side of the head (what would the neighbours think?!) and fought her corner so he resorts to sitting in the back, flicking his siblings randomly to annoy them and plotting 17 different ways to disembowel his mother.

Mr DNTW’s goes to start the car. However in a bid to be more ‘eco aware’ the family have recently purchased a hybrid vehicle which is still plugged into the outdoor charge point so is going nowhere. Frankly perhaps their green credentials might have been more impressive if they had resisted the urge to procreate all together but as Mrs DNTW’s is fond of saying “that ship has long since sailed!”

Sighing with effort and exhaustion from his earlier MEN’s work and the ear-splitting levels of bickering about who is breathing whose air, who has more leg room and other such scintillating snippets of conversation, MR DNTW’s climbs out of the car & disengages the charger. Having returned, clicked the seat-belt & started the engine, Mr DNTW’s is alarmed by the frantic arm waving exhibited by his good-lady wife (she is now on her mobile phone) and wonders whether she is demonstrating one of the latest on-trend dance crazes or having a fit of the vapours, when he realises she is indicating that he has left the hatch open on the side of the car where the charger had been connected. With bad grace he exits the car again to close the hatch.

Sarcastically asking the tribe if we can go now, Mr DNTW’s realises he has left the dog poo bags in the kitchen drawer so bad-temperdly goes back into the house to retrieve. When he returns, the car smells of farts which all are blaming on the poor dogs whilst Child Number 2 sniggers.

The engine is once again switched on and the family car begins creeping down the drive. Mum has now finished her phone call and asks if anyone brought the dog lead. There is an awkward silence. Mr DNTW’s is muttering viciously & attempts to re-enter the house, having forgotten the house alarm has been set. He finally emerges complete with lead, muzzle, dog-treats, gaffer tape, rope, Stanley knife and vaguely serial killer-esque grimace.

The DNTW’s collective make it onto the road and drive to the very beautiful, natural park for their uplifting outing and commune with nature. By the time they arrive, one of the dogs has been car-sick and 2 of the children are no longer speaking. At least this means it is relatively serene…. for the time being.

The dogs are let loose from the lead & promptly spot a RIVER. This is indeed a most excellent adventure and before Mrs DNTW’s has time to enquire whether anyone remembered to pack a towel, the dogs are happily wading in the shallows, ignoring the human’s instructions and proving that the doggy obedience training classes they attended really were a waste of time. Mum is reminded that there is NO SUCH thing as a BAD DOG only a BAD OWNER. She also reminds herself that since she failed dismally to train the children, it is hardly surprising that the dogs are feral and witless too.

Not THE river but a fab great big puddle anyway!

After 5 minutes of walking, child number 2 moans that he has had too much fresh air, he is hungry, he is thirsty, he is tired and he doesn’t understand why he had to leave all his bl**dy gadgets in the car, especially as all of nature is just 💩.

Child number 1 is as excitable as the throughly bedraggled and soaking dogs and has been reminded by his father that if he too enters the river, he will have to walk home. In his underpants.

Child 3 steps in something unpleasant. So does Child 4. There is much wailing; not just by Mum. The wheelchair wheels are also covered. Dad begins to wonder if nature is taking the proverbial. The dogs, now muddy as well as wet, debate rolling in the thing that their humans seem to be covered in. It might be fox 💩 which is definitely a favourite.

Child 2 asks whether he can buy a drink at the shops. And an ice-cream. Mum tuts and reminds him they are “socially distancing” and will not be frequenting the shops, especially as this does not constitute essential supplies. She retreats when he withers her with laser-eyes.

Child 2 asks if they have at least bought a picnic with jam sandwiches and slabs of cake, plus fizzy pop since this is what all good books detail as “essential” picnic food stuffs. He is unamused when Mum explains that the daily exercise allowance rules expressly forbids such tomfoolery in the time’s of the “C” apocalypse 🦠

The walk continues, punctuated by Mum’s squeals of delight that she has spotted a white flower, a yellow one & a big, twiggy-blossom-covered bush. Unfortunately, despite balancing on one leg, leaning precariously at an angle and dancing widdershins round a fallen log, she has no internet coverage and is therefore unable to identify any of the pretty flora.

It is fast becoming apparent that the children are merely a hares-breath from shoving one another & possibly their parents as well, into the river. The lovely walk turns into a break-neck speed hike back to the car in an effort to get the whole farcical adventure over as quickly as possible.

All breath a sigh of relief when the car is in sight, apart from Mr DNTW’s who realises that transporting this motley crew home, will render the previous days car-valeting that he spent many hours performing and perfecting, null and void. Ah well, when he gets home, as Mrs DNTW’s has had a lovely afternoon off, she can resume educating their precious darlings whilst he gets out his stellar assortment of cleaning products and cloths, especially the very nice, soft one he found in the clean laundry pile …..

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. ❣️

    Shoulda, woulda, coulda…..

    I’m not often given to introspection or too much dwelling on the past; after all, it rarely helps in changing anything going forward and dredges up old emotions and difficulties that you can’t fix. Indeed, as my Father is so fond of saying “If your Aunty had bo**ocks, she would be your Uncle!  (so couth, you can tell where I get my social graces from can’t you?!)

    Don’t get me wrong, I’m rather partial to the fond memories of yester- year and have (very!) rose tinted views of those halcyon days of early child rearing.  In fact, I must be more than fond, some would say questionably insane and definitely have done more than reflecting on memories since I ended up with 4 of the now not so little blighters but generally speaking, I am much more about the present and the future. Of course there are lessons we can learn from our past. History tells us that often enough right? (although judging by the current state of world affairs, I’m not so sure what we learned but this isn’t a political piece so I will move swiftly on.)

    So, why the title of this blog? Well, I’ll get to that properly in a minute but first let me explain that, 29th April 2016 sees the annual celebration of Undiagnosed Children’s Day – an event that is hugely important to families like mine because it gives us the opportunity to come together, support each other and know that we have something unique to celebrate – our uniqueness is flipping awesome!!

    In a world defined by labels,  especially where special needs, medical issues/conditions are concerned, in a myriad of coloured badges, ribbons, stickers, plastic bracelets, just giving pages etc etc, we too have a specific day to raise awareness, feel the love and hopefully share some of the important info we have all learned over the years, which might, just might, prevent another parent or carer feeling alone and isolated; a space truly  dedicated to those who don’t have a diagnosis.

    Back in January a group of SWAN UK  (SWAN UK: Home)  bloggers got together to focus on this years Undiagnosed Awareness Day and some of the key points that we as parent- carers would like to get across to the world at large about why it’s so important to spread the word and ensure that all those in need of support find their way to us. Aside from a weekend of laughter, giggles, and perhaps more than the occasional glug of pinot grigio (strictly post workshop you understand!) there were many, many issues that came to light.

    In spite of it being the year 2016 and the huge advances in medical science and technology,  we know that approximately 6000 children are born EVERY YEAR without a name for the medical issues and difficulties that they face. One in 25 children is born with a genetic condition and based on current data, 50% of children undergoing genetic testing through the NHS won’t get a diagnosis!  Scary reading isn’t it? Even more scary being a part of that statistic but regular readers of my blogDefinitely Not The Walton’s…. | The Life & Crimes of a …will know that we have 2 children with what is felt to be an undiagnosed genetic condition.

    Our youngest children are 9 and 7 respectively but our journey on the undiagnosed path only began shortly after the birth of our youngest child and it leads me back succinctly to the title of this piece. Over the years, and most particularly in the early days of learning that we had a physically and medically complicated child, there are so many things that would have been helpful to know; so many things that I wish someone had taken the time to explain to me, not least of which that actually answers wouldn’t be forthcoming just like that and that 7 years into our journey of riddles, we would not necessarily be any closer to unravelling the mystery. That at times, the plot would actually thicken!

    The Minx in particular is a conundrum most contraire (entirely reflected in her personality too!) Her response to specific investigations to define whether her overall condition is  muscle related or nerve related (albeit with some interaction from both) have repeatedly come back as inconclusive. Frustratingly, more than one of her consultants has admitted that clinically they don’t see children in the pattern she presents with – technically the results produced don’t happen or are more clear cut – not in the Minx’s case naturally!

    Normally such investigations define whether the problem is nerve OR muscle based but in Minx’s case, neither can be ruled in or out since aspects from each are prevalent and not in a helpful, lets pin this down kind of a way.

    7 years of looking at specific genes for myasthenia, nearly 3 years being on the DDD study  Deciphering Developmental Disorders (DDD) project … and almost 6 months under the Genomics England | 100,000 Genomes Project we are still waiting for that elusive diagnosis and who knows if we will ever get one.

    Perhaps more importantly, will we get one that means anything? Despite the rapid advances in genetics, many parents are still only receiving a bunch of numbers and letters, detailing duplications/mutations or missing links and these being  so rare in themselves, tell them nothing about what to hope for in their child’s future or how/if any future children they may go on to have will be affected. Whilst we have definitely closed the door (what do you mean after the horse has bolted?!) on that particular matter, I still couldn’t answer when my 16 year old asked if any future children he may have will be affected.

    So if I could go back to the me of old, at the start of this phase in her life, mother of a newborn, beautiful baby girl, I would reassure her that actually, even 7 years after being on this undiagnosed journey, she would still have her marbles  (as much as any 30 year old  +10+1 mother of 4 can have anyway) that she would hold it together most of the time (see earlier comment in brackets!)  and that nothing she did/didn’t do was to blame, not even that rogue glass of wine or piece of brie that crept in somewhere along the line during the early days of unknown pregnancy.

    I would give that woman a hug and tell her she would find a way through those early days of painful physiotherapy, 3 times a day doing stretches, 3 times a week at the child development centre with a distressed toddler screeching his accompanying woes to the cacophony of crying. I would show her that the all physiotherapy would produce a strongly independent child who can hold a pen, draw, colour and write beautifully in joined up hand writing no less.

    I would tell her to ignore the off the cuff remark from some ‘helpful’ consultant  about the possibility of her child never walking – after all if they can’t tell me what’s ‘wrong’ with my daughter, how can they tell me what’s right? A far too simplistic view of course but you get the gist.

    I would let her see those days of feeding difficulties that resulted in 6 different meals being prepared in the desperate hope that she would eat something, ANYTHING (even a cheesy wotsit) would result in a self assured little girl who despite not managing much in volume from oral consumption, would have a palette far superior to her typical kids who would happily survive on a diet of pasta and pizza. Present the Minx with a plate of smoked salmon, coleslaw, olives, Bruschetta, salad, you name it really, she would tuck in with gusto. At the very least if she is having an off day and food is a total no-no, that her feeding tube, specialist milk and pump will sustain her.

    Perhaps most importantly I would show her that she would draw on reserves of strength that she never knew she had. That she would stand up to Doctors and consultants and nurses who thought they knew better but woe betide you confront or ignore a mother preparing to support her child in times of medical need. You may have the letters after your name, the fancy certificates, diplomas and steady surgical hand but I, I have my child’s utmost well-being, heart and soul to think of and in that, other than my child herself, I rule supreme. I really hope in reading this that it comes across as intended, not as some arrogant, bigwig, thinking I know more than the medical teams, but that I understand my daughter and her needs better than anyone else. My future self would probably also tell me right now to stop justifying what I mean 🙂

    One of the other essentially vital things I would have done differently in those early days of isolation and fear, worry and struggling to find a place where we would fit in, would be to have directed that me to SWAN UK.  http://undiagnosed.org.uk/undiagnosed-childrens-day-2016

    Instead of 4 years gadding about in the no-man’s land of the undiagnosed, I could have been part of a fantastic, amazing, inspirational support group of parents who would have scooped me up, drawn me in and given me a place to belong. That me would have relished the feeling of being ‘home’ in spite of the unknown, knowing someone would be there to answer my random worries in the middle of the night when swans like to cause mischief and fight sleep (no cleaning the cat litter box out did NOT cause Minx and G-Man’s issues!)

    So now, this me, wants to help other parents, wrap them in the warm blanket of understanding and support and light the way to SWAN UK. You, Dear Reader, can help to. How? Please donate whatever you can to SWAN UK’s: Just Giving page or  Virgin Money Giving page.

    You can see our fabulous SWAN UK Lauren Roberts achieve a child hood ambition by taking a dunk in a bath of beans: http://www.justgiving.com/BeanGate

    You can learn more about SWAN UK and the marvellous work they do: What does SWAN / being undiagnosed mean? | SWAN UK

    Oh and you can also share my blog piece and visit my FB page: Definitely Not The Waltons – Facebookhttp://www.facebook.com › Other

    Thank you 🙂

     

     

     

    I am *that* Mum…..*

    Tomorrow is one of those school days that strikes fear in my heart every time it rolls round…and I’m sure it seems to be more often than once a year: World Book Day!

    Don’t get me wrong, we LOVE books and reading in this household and the little 2 still love a bedtime story of an evening but, and it’s a very big BUT:  I hate, hate, hate the palaver of agreeing a costume with fussy off spring, (think negotiations that would have the UN weeping, weeping I tell you into their FairTrade, organic, earth friendly, GM free, soy free, dairy free, skinny, decaf foamed top latte)  sorting out said costume without spending a small fortune, or worst still having to make something Blue Peter style, all with the aid of some sticky backed plastic, a wire coat hanger and an old cocoa tin…and naturally finding of course that when the day itself strikes, obstreperous child has decided they no longer want to wear whatever it was that we eventually agreed on.

    Minx has STILL not forgiven me for sending her in dressed as her favourite character when I mis-read the school news letter 18 months ago. Dressed as Hello Kitty, face painted to the nines (I was quite proud actually), I was just relieved to get her out the door, vaguely on time. Turns out she was supposed to be her favourite Roald Dahl character….she mutters mutinously about this on a regular basis; I fully expect to wake up one day and find a horses head or similar in my bed such is her displeasure and looooong memory; the mafia would be proud..and in my defence, I wasn’t the only parent who got it wrong – there was many an Elsa, Anna,  Jedi, Ninja etc.

    I always have the best intentions. It’s not as if I haven’t known that World Book Day (WBD as it shall be known from here on – is it more than just co-incidence that WMD – weapons of mass destruction share similar initials?!) was rearing it’s ugly head. The supermarkets are full of natty dressing up costumes, my e-mail in-box is crammed with would be Amazon/Argos et al suggestions and Mumsnet is positively brimming with wholesomely good ideas of things I can make in my “spare” time. I can’t help thinking that’s for those smugly talented ex art school mums who can make a haute couture gown out of an old bed sheet rather than some fingers and thumbs wanna be who likes to get a bit trigger happy with a glue gun and some sequins when the children aren’t looking – can’t possibly get that stuff out in front of them, just imagine the mess. Shudders.

    Then there are the even more earth-motherly brigade who will proudly post in a flourish  of FB collage pics the offering they have created lovingly TOGETHER with their offspring. A step-by step guide to how they put together The Very Hungry Caterpillar costume that instantly transforms not just from the caterpillar to pupae stage but onwards to full butterfly glory complete with working proboscis at the mere flick of a press stud and then self deridingly say “Oh well I let DD/DS (darling daughter/son for those not in the “know”) do ALL their own work really, I just helped with the dangerous bits…..sheesh….

    So as I mentioned, it’s the day before WBD and number 3 son, whose in an almighty cob-on with me anyway hasn’t agreed the costume. We had agreed Harry Potter (easy enough) then Horrid Henry (now too baby-ish apparently) and finally Jack from David Walliam’s  Grandpa’s Great Escape. In theory, I should grab that character with open arms -jeans and a t-shirt, it’s a no brainer. But in reality, I will look like one of *those* mum’s that has forgotten or worse still, can’t be bothered to make any effort.

    My tearful pleadings (slight over-exaggeration, more vague grumbles) that perhaps he could go as Grandpa himself complete with blazer, face painted moustache and war medals have fallen on deaf ears. So here I sit procrastinating, wondering if I can make a paper-mache SpitFire that could somehow attach to G Man’s body via elastic or similar so he at least looks as if I have vaguely tried?! Will it dry in time, where IS that glue gun…..Even the netters costume guide of The BFG looks easier than a fully scaled Spitfire but he won’t be persuaded. Sigh.

    Minx on the other hand is going as Ariel from the Little Mermaid. She is merely demanding hair dye of the orange hue and an intricately woven plait that will need at least  a You-Tube demonstration and preferably a quick crash course with Charles Worthington to produce. Since we luckily have a mermaid costume to hand (doesn’t everyone?!) and even one that fits her Build-A-Bear she is relatively easy to please. Of course trying to persuade her that she will NEED (have) to wear leggings and a long sleeve top under said costume, since it’s March and snowing, is proving more of a challenge….I can’t possibly be *that* Mum that sends her child in inappropriate school wear again can I?!

    Well if you don’t hear from me for a while via FB/blogging, I have either had an incident with a rogue stapler, poster paint and empty washing up bottle or my children have once again disowned me and actually done away with me for good since I am just too embarrassing for words……   🙂IMG_0047IMG_5248

     

     

     

     

    D-Day….Red shoes Part 2…

    image.jpegYesterday was D-Day – The Day I spoke at the Rare Diseases UK AGM in front of various learned bods and alliances of support groups etc.

    I have had so many wonderful messages, e-mails and texts asking how it went and am truly overwhelmed by the support; it means a lot. Since everyone was still awake by the end of my speech and no one threw anything at me (mind you as my dear Father pointed out, have you seen the price of fruit these days?!) I am counting this one as a win.

    Yes, it was nerve wracking and I had sweaty palms (bet you are glad I shared that aren’t you?!) but the main feeling  I came away with was empowerment. So often as a parent we are at the whim of the medical teams and therapists; so often we wait passively for tests, results, follow up consultations and such like that the lack of having control, feeling disempowered, becomes our norm. More disconcertingly, you don’t even realise that’s what you have become used to, until something –  in my case the opportunity to take part in the discussions at the AGM –  makes you feel alive again. I can only describe it as akin to feeling numb to everything most of the time – maybe because we parents have so much invested in our children and the lack of diagnosis over time saps your energy; we become a faded, more jaded and insipid part of ourselves? I can’t say.

    What I do know is that having people listen to our experiences as a family, acknowledge the battles we fight and most importantly recognising that things need to change for all families and patients involved with complex care needs was so very important. Not just for me but for the wider community as a whole.

    It was most interesting to hear from Larissa Kerecuk, the Rare Disease lead from Birmingham Children’s Hospital and the plans that have been put in place to improve services, including a whole new building block being dedicated to paediatrics department specialising in rare diseases. Inspiring and definitely the way forward! Whilst I certainly wouldn’t wish a rare disease on any one, particularly a child, patients and families utilising their facilities when the project eventually comes to fruition can be assured that they will be treated in a fantastic facility, thought through in minute detail and concern. This can only be a good thing and I will follow their plans with great interest.

    To listen to Jo Goode’s experience of having a very rare condition (dermatomyositis) and the battles she has faced (and still faces) over the years to get her diagnosis, even now to access appropriate treatments was both insightful and familiar in spite of the differences in her needs and those of our daughter. In fact, there was much nodding of heads all round the  room from those who have obviously fought similar battles and could relate in ways that only a patient or carer can.

    Although I thought when I first stepped up to the podium that I might regurgitate my spinach and egg muffin over the first few rows,  I came away uplifted and empowered (& probably not just because I’d had a night in a sumptuous hotel room away from a beeping feed pump and the clamouring of my children, although I am sure that helped!)  I really felt that I had contributed something useful and that those involved were striving for the best possible outcome for all affected by rare diseases in one way or another.

    Whilst it was lovely to get home and see the family,  the irony of returning to my small folk who completely ignore everything I do, say and suggest after such lofty heights of the morning was not lost on me.

    So, would I do it again? Hell yes! Watch out SWAN UK and Rare Diseases UK, you may have just created a monster!!

     

     

     

    Put on your red shoes…….

    stock-photo-7693735-red-dancing-shoes

    Since I am writing this in the week that David Bowie died 😦 it seems more than a little appropriate that I get to use these iconic words in a blog post (thank you Let’s Dance)…  Ironic also that I had already planned the title of this piece before news of Mr Bowie’s untimely passing broke.

    Next week I have been invited to speak at the AGM for Rare Diseases in London at The Royal College of Paediatrics and Child Health in the context of being a parent of an undiagnosed children.  Gulp.

    To say I am more than a bit nervous is like saying that water is a bit wet……I really hope I can do justice to the community of parents/carers and children that compromise the medically/physically/cognitively complex, be they diagnosed or undiagnosed.  To get our message across about the lives we lead and the many roles we have. It’s no biggie right?  I’ll just imagine all the audience in their undies or something whilst I stand up and spout words of blah wisdom.

    Having been invited to speak at the AGM not long before Christmas, I convinced myself I had plenty of time to write something EPIC but with Christmas hols, small people and large people around (not a size reference, honest, we had family staying) over the festive season, time got away from me and there were other more pressing matters to attend to (that wine wouldn’t drink itself you know).

    I promised myself once the children had gone back to school I would settle to the task but hadn’t then banked on having “writers block”.  I don’t really consider myself a writer per se (sounds far too grandiose) but I knew with an event like this, I couldn’t really just stand up and wing it without something concrete to go on, even if that was only notes.

    By the early part of this week, I had got as far as “Good Morning” and then found myself distracted by e-mails, Facebook, adverts, the sun light on the wall, what to wear – you know, anything basically other than committing pen to paper or in this case, key stroke to page.

    It occurred to me having been given a fairly open brief and a speech timescale of 10 to 15 minutes that I had absolutely no idea what that looked like on paper. So that gave me another few minutes to play on google in the name of “research” and I discovered that somewhere in the region of 2500 words should cut it. Of course that threw me another dilemma: how fast do I read/speak???

    Not being well versed in the art of public speaking but having been involved with theatrics in a previous life (theatrics?? you never would have guessed that would you?!) I know that it’s imperative to speak clearly and relatively s-l-o-w-l-y to get your point across and ensure your audience has understood and is engaged with you. So my usual style of 90miles a minute conversation (I even leave MYSELF out of breath) at times, wouldn’t cut it.

    Nonetheless, all the vagueries of word counts, words per minute and such like were not getting me any closer to getting anything worthwhile written down. So then I decided that as I needed to use some family photos to frame my discussion around, that would be a good way of knowing what I wanted to convey and therefore a good place to continue my research.

    It hit me as I explored the files on the lap top just how many gazillion or so photos and videos we have taken over the years. Far from helping however, this just distracted me still further. For the most part, it was a lovely stroll down memory lane but punctuated with pinpricks of poignancy. It also highlighted our abundant lack of organisation since photos of kids were mixed in with cats, cars, sunsets and mobile downloads but nothing in the latter years was organised so that I could find anything I actually needed or relevant to the job in hand!

    So after several hours on the laptop, I had accomplished nothing more than alternating between whimsical nostalgia, smiles and a few blurry eyed moments (must have been the dust) but not anything worthwhile to bring to the event. Hmmmnn…

    I was fairly sure that although the subject matter was essentially down to me, waffling on about the benefits of chocolate being an anti-oxidant (honest, it’s on the internet so it MUST be true!)  was not entirely the content that The Rare Diseases Org had in mind when they wondered if I would speak of my experiences.

    But back to where to start, how to begin and how to convey such a very important message about dealing with the complexities surrounding family life and to give a snap shot of  all us families in a similar situation? The more I thought, the less I knew where to begin. How do you explain the hopes, dreams, worries, fears? How do you bring out the highs, the lows, the triumphs and tribulations and yet not make yourself or your family an object of pity or woe is me?

    And then I took a breath and realised I cannot speak for everyone. I cannot pretend that I have the same experiences, difficulties or successes as others.  I can however speak as honestly as possible about our day to day lives in the hope that it might give a small snapshot, an insight and an overview and that gave me my voice, my focus for the piece.

    I hope that in some small way it might humanise the process, certainly to the medical professionals who while however compassionate they may be, for the sake of their sanity and jobs, can really only think about us as long as we are in their consulting rooms or wards, operating theatres and such like. They cannot contemplate that before we arrive in their domain, we may have organised a plethora of tasks that make a popstars rider look like easy pickings. Other children that we have farmed out to willing family and friends so that we can attend their appointments, PE kits that we have painstakingly washed and ironed for 3 days hence with sticky notes on so they go to school on the correct day because we will be in-patients for a week or so. The lists of who eats what foods on what days and suggested alternatives in the event that child a, b or c throws a wobbly and proclaims they DON’T EAT THAT…EVER… The last minute spray of perfume on a kleenex so that the child having a teary moment because you are leaving AGAIN can be comforted by your smell.

    So trying to communicate that angle of my life seemed like a very good place to start and funnily enough once I had begun, the words just flowed. Whether they are “good” enough,  powerful enough, emotive enough, I have no idea, but they are honest, they are my day to day and certainly reflect a lot of the experiences that other special needs parents have highlighted to me so they will have to do.

    I’m still trying to wade my way through photo’s to add in and also finding some copy right free visual images to jazz it up a bit in the background but my biggest conundrum now is definitely what to wear 😉 (that’s very tongue in cheek for the avoidance of doubt!) What I do know for sure is that I have a pair of kick-ass red shoes that always make me feel fab, no matter what I am doing. So aside from whatever else I end up wearing, let’s put on those red shoes and whilst I definitely don’t think I’ll be dancing or doing a jig, it’s always up there if I get “speaker’s block”….jazz hands anyone?