*please feel free to hum/sing that to the Italian Job theme tune to get in the mood!
Today is Undiagnosed Children’s Day 2020!
This whole week should have launched joyfully with much fanfare and a variety of exciting plans and activities, guaranteed to generate awareness, interest and much needed funds. Unfortunately as we all know, the universe had other plans & so we are all stuck, if not totally inside, then only venturing out for the essentials, scurrying away from our fellow humans & hoping no one gets too close, breathes on us or worse still has the audacity to sneeze or cough in the vicinity.
How I miss the days when a public sneeze generated a polite “Bless you” rather than people backing away in fear and/or rage. It’s definitely not a good time to have hay-fever that’s for sure!
I definitely don’t mean to make light of what’s going on with this awful pandemic causing huge isolation, suffering, financial panic and tragically, the death of far too many, dying much too soon. 😔
There are untold and incomprehensible ramifications of the wider fall out from COVID19. Much of which I suspect won’t even be clear for years to come; perhaps only even when future generations reflect on the past and the repercussions from these times. Splinters and cracks from the epicentre appearing like those on a broken mirror, spiralling out ever further and further.
For now though, it is at times like these, that my SWAN UK family are more important than ever. Who are SWAN UK and why so important you may ask? SWAN stands for Syndrome without a name. It is not a diagnosis but an umbrella term for a child who has a medical, physical and/or cognitive condition that is likely genetic in origin but of unknown cause. SWAN UK is the only dedicated network providing support to families with a child with an undiagnosed condition – A family like mine. https://www.undiagnosed.org.uk/about-us/
For those of you who know me in the “real world” or have followed me and mine via social media https://www.facebook.com/definitelynotthewaltons/ you may already be aware that I have been a parent representative for SWAN UK for the last 5 years. I am (allegedly) a mother of 4 children/young people and 2 of my youngest children are SWANS who like to keep myself and the medical profession on their toes. I have also been a member of the SWAN UK community for approximately 8 years and shared the highs, lows and everything in between.
Due to the nature of the vulnerabilities that our medically complex children present with, my family are currently shielding. Many of you reading this will be too. I know that many of my fellow parent-carers on SWAN are too. Ironically being a SWAN parent probably makes it easier to cope with the current challenges the world is throwing up at us. Many SWAN parent/carers are used to living their lives in uncertainty, in the shadows of those with mainstream, cognitively typical children. Too many SWAN UK carers and the siblings of affected children know that we live by plans that ever change, emergencies, sadly sometimes of the blue lights and sirens variety and far too many know the pain of losing a loved one before their time.
We have become used to feeling isolated, not being able to go out with our children because we don’t have enough support, be that in terms of carers or facilities – ever tried changing a 9 year old on the floor of a disgusting toilet cubicle? Probably not (I hope not) – but this is just one of the many realities for those who care for children with complex needs. So being stuck at home isn’t necessarily new to us.
Whilst every family with a SWAN child will have differing experiences – there is no common denominator of a SWAN child (apart from the fact that looking through the photo gallery of our community, they are all ruddy gorgeous, cheeky, amazing kiddos!) we all know that our children throw us curved balls, medical crises or meltdowns that just cannot be calmed with a soothing word, change of scene or face. We know the fragility of life and we know that we have to adapt and roll with the punches because we can’t change things – or change the world expediently for our children.
But we also know the vibrance of a life well-lived, of seemingly simple but oh so important triumphs – first steps tottered at 5, 6 or even later; first words painstakingly achieved by hour and hours of speech and language appointments and therapies practiced over and over again. Of new skills that come later in life, sometimes only fleetingly appearing and then regressing again, depending on the nature of our children’s difficulties.
Now more than ever SWAN UK needs any support you can offer, no matter how big or small. Although some of the activities we had planned to celebrate Undiagnosed Children’s Day 2020 have had to be curtailed, it hasn’t stopped our community spirit or our passion for highlighting the importance of belonging in a group of like-minded people who can be there for each other through out the day and night.
Never has social media played such an important part of our lives – a network on which we can connect, celebrate and commiserate. Our private Facebook group is a source of comfort and a wealth of advice and experience until we can meet again in the outside world. Please help SWAN UK continue to be there by sharing this post, others like it from the social media platforms and give what you can: https://www.undiagnosed.org.uk/donate/
* 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.
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.
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 …..
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!!
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
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.
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.
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
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?
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….
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.
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:
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. 😉
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. ❣️
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
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 😊
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.
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!
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…..❣️
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
There are many days where I feel like waving the white flag of surrender. I give up. Stick a fork in me, I’m done. Substitute your own personal favourite motto for when the 💩💩 just keeps on coming and you really don’t want to face it anymore.
As a rule, I am not a woe is me kind of a gal but there are limits and even for the Queen of “the glass is half empty, therefore there’s always more room for wine” claimant, sometimes I just don’t want to play anymore.
So why today? It’s been a busy week – nothing new there. Multiple appointments – again lather, rinse, repeat. Certain “dark forces” (bear with me, having to be slightly obtuse so it’s not too outing; a story for another day!) have done their level best to floor us as family and put up barriers; as my Dad would say: “same sh*t different day.” Nothing especially jumps out as being out of our ‘norm.’
Actually, the straw that broke the camels back today is really rather ridiculous – especially since I’m a grown (loosely termed since I barely scrape 5ft 3″) woman.
I don’t know about you but for me, it’s often the little things that tip me over the edge and today was no exception: there were NO apricot danishes left in a certain food establishment that prides itself on offering not just any old danish…. and boy did I have my heart set on that danish.*
You could in fact say I had built that particular danish up to be the highlight of my week (I know I know, I need to get out more!) and I was relishing scarfing it down with my mid-morning latte whilst staring daggers at my ever-increasing piles of paperwork that needs to be set light to dealt with and some of it rather urgently (anyone thinking I might be procrastinating by writing a blog post instead of dealing with said paperwork, that’s an affirmative!) particularly if I intend to throw my own kind of shade back at the dark forces. They might be putting up barriers but I’m packing TNT, a demolition ball and an AK47 to pulverize them. Ok perhaps I should STEP AWAY from the caffeine….my over active imagination, key-board-warrior-esque approach and twitchy eye suggest that caffeine, my drug of choice, has been consumed in too vast a quantity.
Whether it was the *slightly* murderous deranged look in my eyes or the muttering sotto voce of curses questioning the parentage of all food halls connected with this particular establishment that caught the attention of the lovely man on the bakery counter, I can’t be sure but clearly sensing something was amiss from the plethora of delicacies in front of me, he tentatively asked if everything was all right.
Resisting the urge to scream out in the style of Ross from Friends a la “My Sandwich” sketch (you young things aren’t likely to be familiar with that gem so let me share it here https://www.youtube.com/watch?v=6tqmXTYa3Xw) and without resorting to tears either (the struggle was real people!) I managed to convey my deep disappointment that there were no danishes of the apricot variety to be seen.
And then, as if by divine intervention (ok, I’m waxing faaaaaaarr too literally, all that caffeine has really done for me today!) the dear, dear bakery man, (alas I did not find out your name in the ensuing rush of emotions that came over me!) uttered those most blessed of words: “not to worry, I’m just about to put some out!” Yes! Fist bump, air horns and angels singing the hallelujah chorus; the gods and goddesses and the high priestess of bakeries had smiled righteously upon me.
I must confess it felt like there was something in my eye. I’m thinking that as my salivary glands went into over-drive, some sort of neurological spill over occurred to cause watering?
But the thing is, I’m a firm believer in taking your pleasures where you find them (erm just to caveat, legal ones, I’m definitely not advocating lawlessness or reckless criminality!) because being a parent is at times bloody hard work.
Being a parent carer is even bloody harder, thankless work and as far as I can find, there’s no resignation clause and as for the pay? Well if you are “lucky” enough to qualify (there are certain criteria and the person you are caring for has to have significant needs taking up significant amounts of time) for carer’s allowance, do the maths – you don’t even get minimum wage for the hours you put in. Oh and no matter how many people you provide care for, you only get a single carer’s allowance.
When you multiply caring for 3 children and an 18-year-old who all have varying medical/social-emotional needs and complexities, there really aren’t enough hours in the day. I go to bed every night with a to-do-list that grows ever longer. For every 2 things I manage to tick off during the course of the day, I seem to have added at least another 5.
It plays on my mind that I have dropped the ball somewhere; have I requested everyone’s medications from the GP and arranged for them to be sent to the pharmacy? Do we have enough feed/containers/giving sets/dressings/lotions and potions in hand to get to the end of the month? Have I transposed all of the appointments that crop up into my phone calendar so I can plan everything round them in the weeks ahead? And woe betide if any of those appointments were only given to me over the phone and I don’t have an actual letter to cross reference and double-check with – will I get the right child to the right hospital/clinic/specialist on the right day and time?!
I’m not ashamed to say I take a concoction of various medications every day to help me manage one way or another; be that for my severe depression, anxiety and inability to sleep or for the acid reflux that plagues me and the dodgy back/neck/shoulders and most recently, excruciatingly painful sciatica (so many carers suffer with joint/muscle pain and problems as result of the physical demands of caring for a loved one with mobility difficulties) I’m acutely aware that these are a crutch for want of a better word. In an ideal world, it would be far better to tackle the sources of the problems permanently. Even better in some far off utopia, it would be to put provisions in place to be proactive instead of reactive. To prevent the aches and pains and feelings of isolation, despair and all the affiliated emotions and physicality’s that go along with being a carer.
I learned to my cost (and that of my families, not to mention the NHS etc) that if we carers don’t put protective measures in to fortify ourselves it all comes crashing down.
I am not unique. As a member of support groups such as SWAN UK – http://www.undiagnosed.org.uk I read far too many comments from parent-carers who face battles similar or even harder than my own.
On other forums I’m a part of in relation to education, health and social care there is a generalised resignation to the fact that accessing support, working WITH organisations or professionals instead of the THEM and US facade is a constantly uphill battle; at best a ‘sorry there’s no money in the system’ approach to outright horrific accounts of utterly despicable, underhand tactics designed to deprive the most vulnerable members of society from the most basic, fundamental human rights and discrediting, even slandering or making false allegations against those who have to pick up the mantle and strive on their loved ones behalf. Probably best I don’t get started. I can feel the vitriol rising and that won’t help the acid reflux!!
Next week from 11th June to 18th June inclusive is Carers Week in the UK. You can learn more here: https://www.carersweek.org It is estimated that in the UK there are 6.5 million carers and that figure is only certain to rise as we face an ageing population who are living longer, an NHS that is under resourced, over stretched and a welfare system that has been not so much stripped back as hacked to death and lord only knows what, if anything will be around in future times to help and support those most in need.
But for now anyway, I have taken care of myself by refuelling with a double shot, fully caffeinated (you don’t say?!) latte and a belly full of apricot danishso I’m bouncing off the walls all fired up to tackle the paperwork and smite those dark forces with a mother’s wrath.
*If anyone suddenly feels the need to shower me in delicious pastries of the apricot kind, you know, I’ll happily take one for the team 😉 Or tell me your own personal sanity savers and maybe I’ll see what else I can try!