The Self-isolation Society…..*

*please feel free to hum/sing that to the Italian Job theme tune to get in the mood!

Never mind the Self preservation Society, for the preservation of society, we all need to be the SELF ISOLATION SOCIETY!

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.

You can have a look at some of the things we have been up to: https://www.facebook.com/SWANchildrenUK/?epa=SEARCH_BOX or https://twitter.com/SWAN_UK?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthorhttps://twitter.com/SWAN_UK?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor You can sneek a peek at our instagram: https://www.instagram.com/swanchildrenuk/?hl=en

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/

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 …..

The Rare Conundrum…..

If I had a penny for every time my children have confounded the medical profession, I would as the saying goes, be a very rich lady.  I won’t dwell on the fact that if I had a penny for every time they have confounded me, I’d also be very rich…and probably less wrinkled, less dependant on caffeine (IV drip anyone?) Chocolate and wine but that’s another story.

However, let me elaborate why my precocious precious cherubs have elicited such responses as “we have never seen that before” or “that’s very unusual/odd/strange” and my personal favourite: “that just doesn’t happen!” – when confronted by my child doing exactly what doesn’t happen right in front of their eyes. 

You see my children, well 2 of them at least, are considered “rare.” On the whole I try to see that as a positive, albeit at times I think the whole world should appreciate their uniqueness by observing them inside a perspex case in a museum but usually those days are few and far between 😉

‘& here we have the lesser-spotted children horribles preserved for prosperity….’

2 years ago I wrote a blog piece to explain what being rare means and how it affects our family. If you would like to have a read: https://definitelynotthewaltons.com/2018/02/

Rare Disease Day is once again looming large upon us – 29th February 2020 to be exact. This year marks the 13th International Rare Disease Day which is held every year on the last day of February. 

Given that every 4 years the month of February inveigles an extra day into the calendar month and thus is a little bit quirky in itself, it seems especially fitting to celebrate all things rare in a unique month, highlighting the weird, wonderful and downright peculiar  (of the medical world you understand(!) – In fact this year there are reportedly 146 events in over 100 countries to raise  awareness on the day itself as well as  thousands of other events throughout February. You can learn more https://www.rarediseaseday.org/article/about-rare-disease-day

You may find yourself thinking that you don’t have anything in common with a rare disease or even know anyone affected by such a thing but if you will spare me a little more of your time, I’ll explain why in actuality, this misconception is most likely wrong.

Based on current data it is accepted that 1 in 20 of us will at some point in our lives be diagnosed with a rare disease and the majority of them, being so rare, will have no cure. Some of those rare diseases may be transient, others life changing and in the very worst cases, life limiting. 

It is not my intention to scare you or depress you (how am I doing so far?!) Merely to heighten awareness around the fact that rare diseases, well really they aren’t that rare and if you personally aren’t affected by one (or more) you are bound to know, possibly even be related to someone who is living with a disease or condition that falls under the rare moniker.

For those of you who are unfamiliar with my family background, I am a mother of 4 of the human child variety, married to the long-suffering Mr DNTW’s, owner (used in the very loosest of terms) of 2 crazy dogs and 1 cat. We used to have 2 cats but one couldn’t stand the melodrama of life with us and shipped himself out. Funnily enough he was also sort of rare, being of the ginger hue – ginger cats are apparently less common than the typical moggy; perhaps he just couldn’t face the competitive nature of this family in the rare stakes?

Furry friends

In a sense of irony that befits our family largesse, all our children have unique and/or rare genes and in a further twist of fate, we only discovered their ‘foibles’ for want of a better turn of phrase, in reverse age order!

I sometimes feel I have to add that bit in almost apologetically – the fact that we discovered this from youngest backwards I mean. When you exchange the usual pleasantries on meeting new people and the topic invariably comes round to the whats and wherefores of each other’s lives, they already think you are a bit bonkers because you have 4 children (or that you don’t have a TV – so, funny…ha, ha, ha….not!) Add in extra/special needs and they either assume you must have adopted and are therefore saintly or if they are your actual birth children, then you are clearly more than a bit soft in the head . Why would you go on to have 4 when you already have one or more with special needs?! Of course no one has been rude enough to say that to our faces (yet!) But you can feel the silent judgement all the same.

All the same, I will confess it was a bit of a poke in the eye with a sharp stick moment (understatement) when our then 17 year old (20 this year!! How?? Believe me I have asked myself this question a lot – I don’t feel old enough to have a 20 year old, although I definitely look and physically feel it) was diagnosed out of the blue with a congenital heart condition, solely as a result of a medical he had undergone because of his chosen career path.

Not only was this new diagnosis very scary – well to us as parents anyway, he took it with the brevity of teenagers and their immortality concept – I did have a bit of a why us moment? In fact I distinctly recall saying that in spite of us making beautiful, amazing and rather fabulous children, (offspring if you are reading this, don’t bother asking for a pocket money raise!) Mr DNTW’s and I are clearly a car-crash genetically.  

Considering there are approximately 7.8 billion people on earth, you have to wonder what the odds are that 2 people who are not related to each other in anyway other than by marriage (we have been asked by sooooooo many medical professionals over the year whether we are cousins/inter-family marriage and such like!)  manage to meet, marry and have kids, all of whom likely have extra needs all because of wonky DNA (technical term wonky!) from each parent; whose chromosomes whilst not an issue individually, in combination have resulted in the difficulties our children face.  There was a distinct wanting to rage against the unfairness of it all and a feeling of being given the shi**iest end of a really shi**y stick. It didn’t help that he received this news at a time I was also stuck in our local hospital with G-Man, (our 3rd) because of his own medical issues.

After a strong coffee (and probably wine) I gave my head a wobble and we began the medical process to discover more about his condition and the implications of it for his future. As these things go, if you have to have a heart condition, he has escaped relatively lightly. Whilst it is progressive in nature and will need addressing in the future, we already know that there are things that can be done when the need arises and because of our wondrous NHS, he will be reviewed regularly and receive the very best care and attention. 

According to an article produced by NHS England in 2016, congenital heart defects are the most common birth defect. Approximately 8 in 1000 children are born each year showing signs of disease and the figure rises still further to a prevalence of 4 per 1000 in adulthood – not quite sure why the discrepancy in figures. Perhaps because associated issues or co-morbidities of the disease are leading to an improved diagnosis ratio?   

Moving on. our almost 17 year old (another DNTW’s on the road later this year?? UK watch out!) is diagnosed with high-functioning autism, sensory processing disorder and traits of Pathological Demand Avoidance (PDA) 

Whilst it is right and proper that autism in his presentation is now more often referred to as autism spectrum CONDITION (previously stated as a disorder and within the medical/scholarly community, it largely remains so) it would be unfair to gloss over the difficulties that this diagnosis brings with it. 

Our son is many things: clever, bright, articulate on subjects he is passionate about (of which there are many) intensely focused on specific interests, able to recall events and facts from an astonishingly wide range of areas (and years of family memories, both a blessing and a curse!) and with a sense of humour that borders on cheek but *just* manages to avoid rudeness….most of the time. Sometimes I don’t know whether to laugh or wish I could gaffer tape his mouth shut; usually depends on the audience. 

But over the years, it has been hard to not understand each others perspectives. At times it’s  felt as if we were each speaking a foreign language with no hope of translation or commonality. It’s been scary and worrying and frustrating. 

Autistic people can find social interactions and communication in general problematic. There are so many surprising ways that we interact with each other so interpreting body language, tone of voice, facial expressions and even the spoken word can lead to a whole host of misunderstandings and anxieties which have knock on effects on self esteem, mental health and well-being.  

To witness his struggle to make sense of this world, to comprehend that the things we say are not always literal – only years later can we laugh about our miscommunications: the expression I used to use when in a rush to get out of the house in the mornings for school: “C’mon, get a wriggle on!” shouted in exasperation and then looks of disbelief at the child appearing to body-pop across the kitchen, which resulted in more shouting (not my finest hour). Or the look of horror on his face when I would say things like “Keep your eyes peeled” if I was looking for a car-parking space. 

Sensory difficulties in so many aspects of life too have taken their toll. Going out to eat at a restaurant, going shopping, holidays, day trips and even visits to family and friends require meticulous planning and contingencies. 

The intensity of the world around you when you are over stimulated by your senses  – hypersensitivity –  and your ability to regulate them must be extremely stressful for many autistic people and especially those with sensory processing difficulties. 

There is an excellent video courtesy of the National Autistic Society which demonstrates this very well: (be warned before viewing, this could be triggering for some people)   https://www.youtube.com/watch?time_continue=12&v=Lr4_dOorquQ&feature=emb_logo which my son tells me is very representative of how he feels when out in public. I know the first time I watched this I felt thoroughly over-whelmed and exhausted, craving peace and solitude by the end. School teachers I imagine this is a but a snap-shot of your day – kudos to you all.

Paradoxically people with sensory processing difficulties also experience significant hyposensitivity – under stimulation in certain senses, particularly tactile (touch) vestibularly (part of the brain/inner ear concerned with balance and eye movement) as well as proprioception  – awareness of one’s own body in space around you. These intertwined sensory needs can result in a craving for input in order for the person to self-regulate. 

These are all issues we have learned about and try to continually learn from in the best ways to support our son but it’s not an exact science.

So is autism a rare condition or one that’s being bandied about like a box chocolates? Hmnnnn, that’s difficult to answer. Certainly I have heard time and again that “autism didn’t exist in my day” more times than I care to recall. There’s a great meme, something along the lines of:

There was no autism diagnosed before 1830……

Mount Everest wasn’t ‘discovered’ until 1856 but I suspect it was there all along!

Our son didn’t receive his diagnosis until he was 10 and this isn’t unusual, even though we had first sought help and guidance when he was around 3 years old. Adults are increasingly being diagnosed later in life but diagnosis rates still vary hugely across the UK alone and there is no one specific test that can confirm whether an individual is autistic.  

In our wider family, there are a number of children with a confirmed diagnoses of autism and/or co-morbidities thereof. Whilst there may be a genetic component for some, testing may only indicate the presence of a known autism gene rather than whether the individual themselves is autistic. Genetics is advancing and evolving rapidly but there remains a long way to go. 

I personally believe the exact cause of autism is irrelevant and understanding, management and appropriate support should always be the best practice approach.  

So far, so not particularly rare or unusual you are probably thinking. However, where things get a little more complex is with our youngest 2 children, G-Man 13, and Minx 11. They may be the youngest but are truly determined not to be left out and are the 2 largely responsible for causing the medical community much vexation. For the time being we know that Minx has an as yet, undiagnosed neuromuscular condition, likely genetic in origin and it is likely that G-Man has a variant of this too.

Minx is the more severely affected but both children are tube fed, had severe reflux as babies, both have dysfunctional swallows related to muscle fatigue of repetitive action and there are various commonalities in their difficulties. 

This is what just 2 weeks of tube feeding equipment/nutritional supplement looks like….. for 1 child!! 🤦🏽‍♀️

Both children are SWANS. This is not a diagnosis. It stands for Syndromes Without a Name and you can learn more here: .https://www.undiagnosed.org.uk SWAN UK is the only designated support group for children and families in the UK without a diagnosis and they have provided my family with a life-line, connecting us with other families in similar situations, even though their children’s needs may be very different to my own. It has given us a sense of belonging, people to talk to at all hours of the day and night, balloons after hospital stays, coffee mornings and family days out. I know from my own experience and talking to others how valuable this is in our rare and undiagnosed community.

Thank you SWAN UK for balloons!

In the early weeks after Minx’s birth her difficulties came to ahead at the age of 9 weeks resulting in an emergency hospital admission and a flurry of subsequent appointments. None of them gave   answers.

I felt very alone and I pinned all our hopes on every specialist or therapist we encountered. I was convinced for at least the first 3 years of her life that the next appointment or admission would be the one where we got ANSWERS and  a PLAN. 

But despite being on genetic studies from the age of 6 months, enrolling on DDD – Deciphering Development Disorders: https://www.ddduk.org in 2013 and https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project/ in 2015, at the age of 11 ,we still have no over-riding genetic answers.

I can reel you off a list of conditions: upper limb arthrogryposis, lower limb hyper-mobility, gastrointestinal reflux disorder, gastrointestinal dysmotility, chronic abdominal pain, muscle weakness and fatigue, congenital myopathy, etc etc  – but although we have seen specialist consultants in numerous different fields, at many different hospitals and although many differential diagnoses have been proffered, thus far nothing explains why my children require a feeding tube for nourishment, why Minx is a part time wheelchair user, has had to undergo countless operations, tests and procedures over her tender years. Why I can’t explain (to her immense frustration) why she is able to do something one minute but not the next; why she can be running around like her friends and then her legs turn to noodles and she can barely stand, let alone walk;  why her hands can hold a pen and write one day but the next it is all she can do to hold her head up; why the things so many of us take for granted are such a battle for her.  

I’ve held her in my arms as a baby, screaming as she was prodded and poked, as Doctors trooped in and out, relentless personal questions about whether my husband is my cousin or other close relative,  examining this body part and that – hers and mine!  X-rays, MRI’s, needles, blood tests, skin biopsies, muscle biopsies. 

I’ve handed her over to anaesthetists, surgeons or gastroenterologists more times than I can recall, laughed about her antics and singing (caterwauling?!) over pre-meds (an early indication of what she might be like when intoxicated in later years I suspect) manipulated her joints for intensive physiotherapy, tried different diets and multiple medications.   Soothed her, cajoled her, bribed her (she is VERY good at extortion!!) wanted to yell at her for being non-compliant but secretly proud of her feistiness and determination that has got her this far. 

G-Man too has had more than his fair share of tests, procedures, trials and tribulations. Both kids have been through more in their young years than many adults do in a life-time.

I’ve paced hospital corridors, driven in a state of recklessness when I should have called an ambulance, ridden in the back of them on blue lights, cried, put a brave face on, been meek when I should have called out poor practice and learnt to fight my children’s corner when necessary. 

I will always have respect for those in the medical profession but equally I no longer place them on a pedestal or assume they know best. They know their speciality, they don’t know my child/ren. It sounds a bit cliched and twee but I have learned such a lot over the years and I do consider it a journey of sorts.

These days I don’t often dwell on the fact that we don’t have a diagnosis and I try not to worry about what the future may bring. Other than typical parental worries: will they drive me to distraction by refusing to wear a coat even though it’s minus 2 with a windchill of minus 10 and snowing? HOW SHORT are those SHORTS?! Will she stop stealing my lipsticks, will he ever hang up his towel instead of leaving it on the bedroom floor,; will they do well in their exams (not because it matters to me as such, more that it opens doors for them),will they have a nice group of friends, make only the kind of mistakes they can learn from without devastating consequences? 

But sometimes in the small hours, or when something new rears it’s ugly head or when they ask me questions I can’t answer, those worries can’t be so easily silenced. And the truth is we don’t know what the future holds. I can waste time worrying about the ifs and buts and maybe’s but down that path lies only doubt and pain and I wont give it headspace.

Tomorrow is never a given for any of us so we may may as well make the most of today ❣️

Planes (no trains) & automobiles…..*

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

** & yes I know it’s a film title..

Bonjour mes amours!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

.

In the blink of an eye(roll)…

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

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

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

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

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

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

ATTITUDE!

In spades. Big time.

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

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

Minx embracing “Break The Rules Day” at school recently

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

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

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

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

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

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

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

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

#Parenting Advice 101#

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

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

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

3am Eternal….

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

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

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

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

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

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

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

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

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

    The Trigger…..(Pull it)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    Relentlessly Relentless….

    blog picture June 2018 final draft 3

    Who cares for the carers?

    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!

    Same but different….rare as Unicorn 💩???

    Rare disease G&A Photo 2018This year 28th February 2018 is the worldwide celebration of Rare Disease Day. 

    The very first ever Rare Disease Day was held in 2008 –  a leap year so the perfect occasion for the initial 18 countries that signed up to celebrate.

    Every year since, countries across the world have united to raise awareness of all things rare in terms of disease.

    Last year 94 countries highlighted their commitment and support to raising rare awareness which is a pretty fantastic achievement.  In fact that’s an increase in ‘productivity’  of 422.2222% for want of a better way of describing it!!! (I had to ask my eldest son taking A-level maths to work that out so if the stats are not right, don’t blame me!!)  So it isn’t surprising that highlighting all things rare is close to the hearts and minds of those who live with a rare disease or have family members affected by a rare disease.

    What does ‘rare’ mean to you? I googled the word rare in the Oxford English Dictionary and the top definition that came up as an adjective was this-  “RARE:  – of an event, situation, or condition not occurring very often. ‘a rare genetic disorder’,”

    After that it went on to talk about rare steaks, uncommon birds and such like. Interesting I thought however that the very first sentence used to define ‘rare’ was in the context of genetic disorders!

    Actually I think the use of the word ‘rare’ in the context of rare diseases is a bit of a misnomer. Why? Because at any given point 1 in 17 of us will be affected by a rare disease! Surprised? Think about this number in terms of the day to day and see how it relates to your experiences.

    If you used public transport today (probably a bad example since much of the country seems to be under snow!) was it crowded? More than 17 of you on board? Probably. Bought a coffee in one of the many high street chains? Hopefully not 17 of you in the queue at any one time but probably more on the premises tucking into a hot drink or waiting anxiously for their turn.

    17 is lucky in some countries, unlucky in Italy. 17 is the number of muscles it takes to form a smile, 17 syllables in a haiku poem. 17 is the least random number in a study conducted by MIT asking people to choose a number between 1 and 20. So again, not that rare.

    A rare disease/condition in Europe is classified as affecting 1 in 2000; in the US fewer than 1 in 200,000. 80% of rare diseases are genetic in origin whilst others are as a result of infections (bacterial or viral) allergies, environmental factors, degenerative or  known as proliferative eg cancers.

    Of those diagnosed with a rare disorder a staggering 75% will be children.  In fact, many of these children are a whole new breed of rare. So rare that their medical/physical and or cognitive difficulties don’t actually have a name!

    Presently we know that there are approximately 6000 children born each year in the UK  alone who have an UNDIAGNOSED condition. Of those, only 50% undergoing genetic testing on the NHS will ever get a diagnosis. And this is something very close to my heart because 2 of my children are undiagnosed.

    Whilst we can indeed be enormously thankful that medical science is evolving and improving so rapidly –  approximately 5 new rare diseases per week are described in medical literature  – organisations like https://www.raredisease.org.uk provide essential support and a voice for those affected by a rare condition.

    For those of us still in unknown murky waters, studies such as  DDD – Deciphering Developmental Disorder  https://www.ddduk.org  or the 100,000 genomes project /https://www.genomicsengland.co.uk/the-100000-genomes-project/  offer families like mine the best chance of getting an answer as to why our children experience various difficulties and potentially the best way to manage their conditions, obtain treatment or assistance and potentially connect with families in a similar situation.

    Families such as mine with children who are undiagnosed and/or ultra rare can often feel alone. SWAN UK http://www.undiagnosed.org.uk provide the only dedicated support network for families of undiagnosed children and young adults affected by a genetic condition. Hand on heart I can say that the support I have received by being a member (and now a volunteer parent rep) has been a veritable life-line.

    Although my youngest 2 children have a myriad of medical terms/symptoms and diagnoses, to date we have no unifying “umbrella” that explains why they are affected. Their medical notes are vast. Between them they have confounded some of the brightest and most well respected specialists across the country. If I had a £ for every time I had heard the words ‘rare’ ‘atypical’  ‘uncommon’, ‘complex (the list could go on for a while, you get my gist) I would be a very rich woman.

    If a part of the human body or a specific organ is supposed to work a particular way, you can pretty much guarantee with my kids that it won’t. If unusual presentations or the extraordinary were olympic sports, my kids would be gold medalists. Several times over.

    So over the years, being able to talk to those who understand what we are going through, who have felt left out, different or isolated has been incredibly important and helpful.

    If one in 17 of us will be affected by a rare disease in some way, IT COULD BE YOU

    Please click on some of the links above to find out more and if you can, please consider fundraising or donating: https://www.raredisease.org.uk/donate/      https://www.undiagnosed.org.uk/donate/

    Tonight Matthew I’m going to be……

    An adult!

    Strictly speaking I ‘adult’ every day, albeit some days more successfully than others.

    Yesterday however, I ‘adulted’ myself to the nines.

    So that you can feel comfortable continuing to read and for the avoidance of any misunderstandings, I should reassure you that this post is perfectly respectable and I won’t be revealing anything x-rated or of a delicate nature. You can all breathe a sigh of relief and resist the notion of poking out your own eye-balls/resorting to mind bleach for fear of dodgy pictures and such like!

    I don’t know about you dear reader but the majority of the time I don’t feel old enough, responsible enough or even qualified enough to do the “adulting” parts of life. Certainly not with success and authenticity in any event.

    Apparently however, being married having children, dog ownership (he might dispute that as pretty sure Milo thinks he owns me) a mortgage and all the other infinitesimal accoutrements of life plus being over a certain age means I automatically qualify as an adult… and there’s no resignation option (well unless you ‘check out’ entirely but that’s generally speaking a bit drastic)

    Over the last year particularly, “adulting” has been a part of my life I’d quite like to have run away from.

    Somehow wherever I hide, no matter how precisely I have chosen the deepest, darkest recess or how carefully I stick my fingers in my ears and shout la-la-la, the necessity for “adulting” always has a way of finding me….darn it.

    And even before last years ‘annus horribilis’ I must confess that I had very often felt like a player in that game “Hedbandz” rather than a real adult.

    For the uninitiated, the game compromises of a plastic head band device with a slot in which you stick a card in which states the object/word/profession and the wearer has to ask a series of questions to try & work out what or who they are.

    For added ‘fun’ you can do a timed session so they have to guess in a specific time period or a specific number of questions. Adding alcohol into the equation for the ‘Adulty’ version I’m sure can only enhance the fun 🙄 But never in a million years would any card ever depict me as an adult; in fact I think I’m possibly only marginally up from a lemming….

    Anyway, what I mean by my ramblings above is, in theory I suppose I should know I’m an adult but the actuality is very different and frankly I really don’t feel I’m quite mature enough to make life or death (somewhat over dramatic!) decisions on a day to day basis when I can barely decide what to cook for dinner!

    So now I’ve long-windedly explained that, I’ll get to why I ‘adulted’ properly yesterday.

    For those of you who have followed my blog for a while or who know me in the ‘real world’ you are probably familiar with my involvement in SWAN UK.

    SWAN stands for syndromes without a name and it is the only specialist support network in the UK dedicated to families of children and young people affected by a syndrome without a name.

    Having 2 children who are classified as SWANS – they are both medically complex and although they have multiple diagnosed difficulties/needs, we don’t have an over-arching diagnosis that draws everything together – getting support from SWAN UK over 5 years ago made a huge difference to myself and the whole family. In fact, if we had not joined SWAN UK (its free!) we would have had no idea where to even begin to think of living when we moved to the UK some 4 years ago.

    Mr Def Not The W’s was allocated Leeds as a base when he joined his new airline but we knew nothing about the area, about hospitals, schools, housing and services and so it was to my trusty network of online friends that I turned to to seek advice and guidance in helping us formulate a plan.

    Of course SWAN UK’s services go far beyond the things I mention above. You can read more about the vital support they provide here: http://www.undiagnosed.org.uk/

    Over the years, the advice, reassurance, sense of belonging and community not to mention the family days out, coffee mornings and get togethers have been a huge source of comfort, support and a wealth of experience for me.

    Back in 2013 it became apparent that holding down a job, even working from home as I had done since 2008, in a role that I could fit around my children, was no longer viable.

    I eventually found that in order to keep on top of work I was in a seemingly endless cycle of being up very early, going to bed very late and working all the hours in between that weren’t occupied with the needs of the family including weekends. Something had to give. It was *almost* my sanity.

    Although I don’t miss the crazy relentlessness of those days and we are fortunate in that we can (just about) manage for me not to work (and are hugely grateful at times to our parents for stepping in when an unexpected bill/costs rears their ugly head) I do miss that feeling of achievement and accomplishment.

    So in September 2015 I decided I would like to try and do something useful with my life and if possible, give a little something back.

    I recognised that combining this with (at the time) 3 children with extra needs was going to potentially be problematic. (Turns out we now have 4 children with additional needs, although our eldest is almost 18 and would revolt against the use of the word child!)

    I decided to volunteer to be a SWAN UK parent representative for North Yorkshire…. if they would have me! And they did.

    In fact, this was absolutely perfect because recognising that caring for medically/physically and or cognitively complicated children can mean life doesn’t follow the best, most carefully laid plans, SWAN UK are happy for parent representatives to volunteer as much or as little of our time as we are able to give. They also understand that sometimes we have to drop everything with little to no notice and have always made it clear that the needs/demands of our children, wider family and ourselves are paramount.

    Over the years of being a SWAN UK parent representative, I have spoken at a Rare Disease conference about my experience of being a parent of undiagnosed children; I have contacted my MP about being part of an APPG (all party parliamentary group) to discuss and raise awareness of being undiagnosed and the implications that has on families as a whole, not just the affected individual. I have visited Parliament and spoken to a wide variety of professionals about the difficulties of living with the unknown and unexpected as well as assisted in organising days out to celebrate Undiagnosed Children’s Day (last Friday in every April) arranged coffee mornings and fund-raising events.

    I don’t want to come across as holier than thou but aside from (hopefully) raising awareness and sign posting SWAN UK, it did make me feel useful and purposeful again.

    It gave me an opportunity to step outside the role of parenting my own children’s medical management and hopefully gave a voice to others in a similar situation.

    Anyway back to the reason behind the recent adulting: after something of a hiatus in 2017, I attended a professionals meeting at our local hospital.

    Having contacted the Harrogate and District Hospital administrative team (via FB messenger no less!) I pretty much threw myself on their mercy. They kindly directed me to the Head of Paediatric Nursing and The Head of Paediatrics and we set up an appointment Gulp.😳

    The fact that the head of paediatrics is also my children’s consultant was not lost on me and was more than slightly daunting.

    Somehow, seeing me in a different role to G Man or Minx’s Mum felt strangely discombobulating; at least in the run up to the meeting itself and I was plagued with disconcerting dreams that I would somehow disgrace both myself and SWAN UK.

    Nonetheless, I asked SWAN HQ to send me some literature and armed with this, my trusty, very bright pink SWAN UK bag, business cards (get me! I’m posh!!) and a lanyard, I put my big girl pants on (erm figuratively you understand, I haven’t gone totally Bridget Jones yet) and my “grown up” clothes on.

    Being only 5ft almost 3 inches, adulting clothes usually involve heels for me. Fretting that I didn’t want to look like I was trying too hard or heading out for a slap up meal, I opted for heeled boots, a patterned skirt & top, with a bit of jewellery and a swish of eyeliner & lippy.

    On the inside I may have felt about 5 and was quaking like a jelly but externally I *hopefully* projected confidant, knowledgeable and approachable….

    Obviously I couldn’t really ask those present at the meeting if I had successfully captured that but my audience were enthusiastic and receptive. They were keen to read and then display the literature I provided and told me that they would be disseminating the information to fellow colleagues, the Paediatric ward, Child Development Centre, Parents Room and Paediatric clinics. I also got agreement to have a stand in the foyer of the hospital to coincide with Undiagnosed Children’s Day in April. So all in all, I think it went well.

    I came away feeling positive and uplifted and like a real-life proper grown up for the first time in a very long time. I’m pretty sure I didn’t have my skirt tucked into my knickers at any point or commit any other embarrassing epic social faux pas’s so all in all winner winner… I hope…. 😊