Tick Tock

The clock relentlessly ticks & chimes. It is insistent but dull; a constant in the background, a drone of bees.

When I wake there are moments where I cannot recall what or why but the fog lifts and I am jabbed, sharply. Ouch. 

Why is time so tritely passing in the blink of an eye yet we remain standing still – limbo – maybe even going backward?

I am wading through sticky treacle & the dust motes settle in and on with the weight of a thousand tonnes to every pace, trying to break my stride, drown me in the quagmire.

Yet we hurtle on – faces, landmarks, dates and days a blur. I cling on desperately, a rollercoaster reaching the summit then: free-fall. The drop in your stomach ever present 

I have so much to say, shout, lambast angrily even but I must bide my time, guard it zealously. I remain gagged, tight-lipped…until, until…..

For now anyway we have reached an impasse.

In time, when the momentum stills, one way or another there will be much to reveal. It will be make or break in that I have no doubt, but for whom is as yet undecided. 

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Smoke & Mirrors…

Busy. Keeping busy. Every waking moment. Planning, doing, moving and shaking; albeit not in the term of “big business” more anxiety and jangling nerves that leave my hands jittering and spilling drinks, dropping bottles (gaviscon off the garage floor anyone?!) and generally causing me frustration and embarrassment.

My mind is never still, nor am I physically. Tick tock tick tock. I have come to the conclusion it is a protective measure: too much time on ones hands to ruminate is dangerous. Thoughts come unbidden.  They still have a tendency to take me by surprise: a mental stock-take of the medicine cupboard; an appraisal of potential “weapons” – it’s amazing what you can do with the most run of the mill household items. The need is still there. Particularly on the bad days.

The house is clean, washing up to date. I have baked, entertained, ironed, meal planned and filed paperwork like a woman possessed. 

I look well. I have make up on, painted nails, hair clean, smelling fragrant. Not only is it my armour, it is an artful misdirection. A new take on the magicians slight of hand. I show what I want you to see. 

Slow down. Take time for yourself they say. Rome wasn’t built in a day. Rest when you can. Why? Will that be the magic fix? 

There are yet even more people involved in our lives now, more meetings, appointments, frustrating phone calls & emails. Everything is happening and yet time stands still. Limbo. At the beck and call of authorities who push deadlines and time frames then move the goal posts at the 11th hour. I no longer want to be reasonable and considered yet moderation is key.

I am raging. I burn with white hot anger. It spills over to my every day life. Fragile children, already clingy, needy, uncertain. They demand, understandably,  so much from me. I am torn in wanting to soothe, appease, console; but I am selfish. I feel conflicted and unsure of my approach with them. They want answers to promises I cannot make. My ferocious, voracious stance is only matched by my impotence and threatens our burgeoning protective bubble. The bubble is as delicate as those blown in childhood from bottles. 

I am told I need to stop with guilt. Ha! It is a laughable suggestion:  I am a mother, a woman & Jewish at that!! We give the Catholics a good run for their money where guilt comes in! If only chicken soup really did cure all ills. I’m sure the NHS would be most grateful though big pharma, maybe not so much?

Do not get me wrong. It is not all black. There are things to enjoy and things to look forward to. Realisations of how much friends and loved ones. mean. I hope they know how appreciated they are – both my virtual, on line support network & the flesh and blood variety. Guilt creeps in when I am too tired to reply or comment. I should be able to support others as they have done me but I cannot find the words, nor sometimes the energy. 

I am in equal parts engaged and yet withdrawn from the real world. I keep waiting for the sense of normality (whatever that is) to resume. Instead I feel I am wavering, teetering. I am reminded of the Stevie Smith poem “Not waving but drowning.”

 

Shoulda, woulda, coulda…..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you 🙂

 

 

 

Blinging it…….

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The weekend just gone was a fab one!

I was invited by SWAN UK to attend a blogging workshop to discuss techniques, skill sets, twitter and the issues of being a parent of an undiagnosed child in general, especially bearing in mind that April 29th 2016 will be this years Undiagnosed Children’s Awareness Day.

Us parent bloggers are hoping to bring forth some pretty darn spectacular pieces to raise greater awareness as well as much needed funding. You can check out more about the work of SWAN UK and read some of the many amazing blogs from fellow parents on the SWAN UK Facebook page:

SWAN UK (Syndromes Without A Name)’s Page – Facebook

Being invited to meet and liaise with a pretty fab bunch of women, booked into a hotel  for 2 nights no less, no kids, no medications or feeds to prepare  was definitely a win win situation for me. RESULT!!

To his ongoing credit and ever accruing brownie points, hubby truly stepped up to the plate and agreed to drive me down to Birmingham where the event was taking place, tagging along all 4 of our children, their various accoutrements plus his drill so that he could carry out some minor DIY issues for his Mum who lives nearby.

Although the preparations beforehand required some kind of military style organisational skills and when we finally left the house, it looked like we were going for 2 weeks not 2 nights, we made it out the door on Friday night running only 20 minutes later than our planned departure which by Beaton Family standards meant we were actually on time.

Traffic was in our favour and the amount of FB notifications pinging out in the car suggested I wasn’t the only excited SWAN mama. To be fair, I think some of us were giddy with the thought of having uninterrupted sleep in a hotel room, although since most of us stayed up chatting and quaffing the odd glass of wine (or 3) into the small hours, the sleep factor meant little in the end. As another Mum put it so eloquently: we are SWAN parents, who needs sleep?!

Prior to the meet up, there had been plenty of discussions about the important factors of the weekend: what to wear, how many pairs of shoes to pack, whether we were going “OUT OUT” after the workshop and who would be having a fake tan in advance. 😉  Mindful of course of the importance of the event itself, we also reminded each other to bring lap tops, tablets and so on so that we could actually turn our attention to the reasons for the weekend.

I have to confess that although I love my tribe dearly, knowing that they were in the more than capable hands of my hubby and my mother in law, I didn’t have any qualms about leaving them (although of course I did miss them….a bit) but for one of the Mummy’s concerned, it was the first time she had ever left her swan in 5 years and that is no mean feat. She also left him for not one but 2 nights – a pretty fantastic effort for a first timer.

I’d like to think that she went home rejuvenated and wanting to do it all again but as she had the dubious “pleasure” of being my room mate and we spent waaaaaayyyy too much time chatting, I’m pretty sure if she goes to any other weekends, she will want a room all to herself!

Friday night saw a handful of us get together as the majority of the team were arriving the next day. It was good to put faces to names – or faces to blogs – many of us have never met in the “real” world (there are over 1000 members in the SWAN UK group, obviously not all of them blog) and although I have met a number of SWAN UK parents in the past on days out, coffee mornings and such like, many of the group have become firm friends but only on a “virtual” basis.

In my experience, SWAN UK is a very unique and special organisation. Bearing in mind that none of our children have a diagnosis, or they may only be newly diagnosed/ obtain a diagnosis that is so rare very little is known about it; in some case they only get a series of random letters and deletions which no doubt make sense to the medical bods but tell us very little about out children’s future prognosis. Our children’s needs and issues can vary dramatically  -those who are profoundly medically complex/fragile, those who are physically disabled or cognitively delayed, there is the most wonderful sense of inclusion, belonging, a glue that holds us together if you will. There is always a friendly voice, a wealth of information and experience and a real feeling of community so every time I am lucky enough to meet more SWAN UK parents, I really do enjoy the connections we have.

Saturday morning dawned far too early after too much chatting but fortified by a stonking breakfast (waffles yum!) we attempted to find the conference venue. Having negotiated the delights of Birmingham city centre which is presently in the middle of a huge rejuvenation project and thus thoroughly confused the sat nav, we eventually made it to the conference venue and sat down to an unlimited supply of coffees and pastries. If it wasn’t for the fact that our team leader was a bit of a whip cracker and determined that we would knuckle down and stick to her well thought out and planned agenda for the day, we might have thought we were just out for a jolly.

However, ice breaker games played, we quickly settled to the tasks in hand and brain stormed like mad. Whilst it has to be said that I am still a total technophobe and probably a liability (turns out “plug ins” on blogs has nothing to do with hair straighteners, who knew?!) I learned some very valuable and useful info which I hope will assist me in blogging henceforth. I can’t pretend I truly understand widgets and linkies and all the other terminology that was bandied about but I do know some pretty good places to do more research and a lovely, very experienced fellow blogger has offered to take me under her wing and tweak mine as necessary…an offer she may live to regret when she realises quite how kack-handed I really am with tech!

I also got to develop my understanding of Twitter a bit better and whilst I don’t think you will find me a tweeting regular, I can see the benefits of such instantaneous connections with a wide audience. So far my main “achievements” (and once again I use this in the loosest of terms) have been to notify Virgin Trains that our carriage had been plunged into blackness on the way home from a London trip and to organise impromptu special assistance for the MIL when all other lines of coms had failed.  Nonetheless, I am determined to keep going and use it to follow others, link to my blog, raise awareness of undiagnosed children etc etc.

It was a pretty full on day and we finished at 6pm with the only decision to be made thereafter as to how “Out out” we wanted to be by the end of the night. Our SWAN UK co-ordinator dispatched us with thanks and a clear message that we were no longer her responsibility with more than a sigh of relief.

We had a meal booked in a well known Pizza establishment…handily located right next to the choppy waters of the Birmingham canal with no railing or fencing surrounding it whatsoever. Tottering along in my “out-out” high heeled shoes (the Minx has already ear-marked them for future use!) and not at this point having had even a sip of wine, it was a pretty sober inspiring thought that I did not want to end up having an impromptu swim post meal….Nonetheless, I did “force” myself to have the odd glass, just to be sociable!

11;30pm quickly crept up and the sensible ones amongst us (i.e. not me!) decided to go back to the hotel, leaving the rest of us to continue our frivolities in a bar where the volume of the music threatened to make my ear drums bleed.

I must admit it was quite a relief to leave in the end and brave the chilly walk back, enjoying what can only be described as the spectacle of Birmingham “yoof” out to party on a Saturday night. I know I am officially old now as not only was the music far too loud but on more than one occasion I found myself goggling at the skimpy attire and scantily clad folk, muttering that they would catch their death of cold and thankful for my full length parka coat, skinny jeans and jumper…although the sparkly shoes still made me feel vaguely rebellious 🙂

Looking forward to posting more and using my new found knowledge to bling things up in the future, I bid you adieu for now. If you would like to, I now have an FB page you can follow: Definitely Not The Waltons

*Erm, aware last 3 blogs have had shoes in the piccies…..maybe I can get a shoe sponsorship deal?!

 

 

 

 

 

 

 

 

Here comes the girls……

I feel like shouting this from the roof tops and for those of you who are my FB friends you will already know but here goes anyway:

I HAD A WEEKEND AWAY…ON MY OWN (well with friends) WITHOUT CHILDREN

and in this case, the use of shouty capitals near the top of the page is a good thing, I promise!!

The weekend just passed feels like it was an age in coming since it was first mentioned and then planned back in May of this year. The PTA mum’s involved with the Knaresborough Bed Race kindly invited me to join them in their annual jaunt away, despite at the time not knowing me all that well. I think even they might have been surprised that I jumped so readily at the invite and whether they were just being polite (or took pity on me!) I accepted with relish and eagerly counted down the months, then weeks and finally the days before our jollies. Too late to withdraw the offer now ladies!

You see, us special needs (SEN) Mum’s don’t get out a lot but when we do, we REALLY like to let our hair down (*erm more on that later)  and enjoy ourselves. Of course meticulous planning has to go in to all the arrangements in making nights out or heavens above, overnight breaks even possible; those of you walking unexpectedly into our kitchens could be forgiven for thinking a full style military coup was in progress if you dared to review the strategically placed boards, contact lists and risk/reward strategies for every single eventuality from Doomsday to playdate and some in between. It’s not always easy to pull these breaks off so short of asteroid/meteor disasters, we have pretty much planned every single eventuality and possibility that could play out during our much-needed planned time out.

Of course first rule of SEN parenting is DO NOT MENTION in front of complex needs child or for that matter any other of your children what your intentions are. Nothing is more likely to ensure a hospital dash or mini crisis of some sort than letting the small people know you have plans that don’t involve them.

I know of numerous other parents like myself who have resorted to mysterious rune patterns on specific dates in the calendar. You find yourself talking in code, gesticulating or using any form of pidgin French/Spanish/German etc that your children do not understand when discussing arrangements with the necessary parties involved. I laugh and sympathise regularly when reading posts and updates from SEN parents talking about “the thing” “the you know what,” or “the unmentionable” in their bid to hide details of any important plans from their offspring who seem to feel compelled to throw a spanner into the works if privy to events.

I think I have been looking forward to this weekend away in particular for so long because the last few months have been very busy with lots of appointments and plenty more to come on the calendar; especially appointments at Great Ormond Street which are both costly to get too and a bit of a head trip in dealing with emotionally and logistically.

Despite the Minx’s best endeavours to convince everyone in school that she is a whirling dervish of energy and make me feel a right lemon pushing her wheelchair laden with only bags and coats as she hangs upside down off the climbing frame, the reality behind closed doors, can at times, be quite different.

Minx’s daily pain levels have increased again and are becoming more problematic despite the significant medication she is taking to control this. Recent tests have indicated that there may be far more issues with her stomach/bowel and even other areas of involvement than we initially thought.

I’m not being deliberately vague but really until we have had some further meetings with her consultants and her tests have been fully analysed, there is no point putting the cart before the horse and panicking unnecessarily. As and when we have more info, I will blog about it but this is not the time and place and anyway, this post is supposed to be upbeat so let’s get back on track.

So this weekend just gone saw me heading to Carlisle. Being of the female persuasion, the train fares were booked months ago, the hotel meticulously organised, restaurant etc etc. Our fabulous organiser, Sharon, had catered to everyone’s tastes and budgets and had us saving into a kitty every week so the total cost of the trip once we descended on Carlisle had been more than catered for. (Unlike the hubby’s version of the men’s trip a month back which was a hilarious ramble of FB messages still not quite planned out on the day of departure!) Sharon had even made us up little goody bags with chewing gum, lottery ticket, condom (like every girl/guide scout knows, it pays to be prepared and it’s amazing what multiple uses a latex balloon has other than its original “purpose”) and paracetamol for the morning after.

Now it has to be said that over the years I have earned a reputation as the FB lush – my wall is regularly plastered in pics from friends tagging me in anything to do with Prosecco, wine, booze etc. I think after my performance this weekend, the Knaresborough PTA mum’s might disagree that I have earned this title….It wasn’t so much that they gave me a run for my money, more that they managed a marathon whilst my efforts were a token sprint.

Initially we were all very well-behaved and the journey from Knaresborough to Leeds was very respectable. However, I pity anyone who decided to sit in our train carriage for the journey from Leeds to Carlisle to be honest. Not because we were rude or swearing but we definitely weren’t that quiet and the veritable feast of foods that we had accumulated between us made those unlucky enough not to be in our party drool and gibber at the site of. There were cheeses and dips, crisps, scones with jam and cream and of course Prosecco. Lots of Prosecco……I think we had taken a bottle each, plus a few more..and pretty much every one of those was consumed on the way up. Even the Northern Rail staff were impressed with our Smorgasbord and suggested we could have made a pretty penny on selling bits and bobs up and down the train. (Thanks to the lovely Northern Rail staff who were great and even attempted to put on a quiz for us. Never really sure if our guard was Trevor or Tony – he answered to both!)

By the time we reached Carlisle some 2 hours later, I had made my first fatal mistake. Although definitely not “drunk” I certainly wasn’t sober as a judge. As I have matured in years, (probably not in attitude) my ability to handle alcohol has largely diminished. I blame it on the children (why not?!) and I generally reach a stage where the next drink will either make me sick or fall asleep. So as we got off the train and headed straight to the nearest pub – stumbling approx 150 metres from the station – all I wanted to do was have a little nana nap. Of course my fellow mums were outraged by this and quickly set up ordering the next rounds. I propped myself up on a corner and failed epicly at downing my wine and soda but was enjoying myself hugely. It has to be said not having small people demanding my attention at regular intervals and being Lisa the person was having a very positive effect on my well-bent, much as I wouldn’t change my role as Mum but it was great to have a break from the norm.

We checked into our hotel and arranged to meet in the bar after we had changed, before heading out to dinner. Prior to the trip, much debate over e-mail had taken place about dress codes for the evenings adventures.  I in particular wanted to know if we were going “out” or “OUT OUT” – any women will understand that there is a fundamental and clear distinction between the two necessitating very different dress codes.

In the end, I think it would have been more appropriate to have gone with the scuba suit as suggested by one of our party since Carlisle was subjected to horrendous rain and wind and was generally pretty chilly. Tottering along in open toed high heels (I’m a shorty, what can I say, even my slippers would have high heels if I could find some!) skinny jeans and sparkly top plus shawl was probably not my best plan and I’m really glad I opted for the curly look instead of bothering with hair straighteners.

Not a one of us had actually thought to check out the location of the restaurant on a google maps before we left so we blindly headed off though the driving rain and eventually stumbled in to the lovely Italian restaurant. Plenty of us resorted to using the hand dryers in the ladies loos to thaw out and dry off before sitting down to dinner.

The menu was fabulous. However by this point, I had completely lost my appetite; not great when yet more booze was on the table and I desperately needed something to soak it up. I attempted copious glasses of water and nibbled at my delicious food but really didn’t do it justice. Being that I also had a wall next to me, whilst the numerous conversation round the table were hilarious (& raucous!) I could quite happily have had a little nod of if it wasn’t for the diligence of my fellow mum’s in prodding me awake.

Post restaurant I was feeling a little green around the gills whilst the majority of our party were only warming up for the night’s festivities. My shame was lessened when one of the other Mum’s (who shall remain nameless, protection of the innocent and all that – us lighter-weights need to stand together 😀 ) announced that she had had enough and wanted to go back to the hotel, to bed NOW and promptly started on her way to do just that.  Fortunately she was also one of my room mates which was even better.

I seized on the opportunity and started back with her. I don’t think the group realised we had snuck off for a good few minutes but by the ringing of my mobile a few minutes later and the outraged squawking on the other end when I answered, I was aware that my lack of presence had been detected. Oops. Busted.

Nonetheless, the girls were fab and let myself and she who shall not be named (not Voldemort obviously) away to blissful slumber. Somewhat ridiculously considering I had the night off, no need even to get up in the middle of the night to see to beeping feed pumps or unwell children or being woken by the dulcet tones of “I am finished!!” (toilet related) – in the small hours, I found myself in bed by……10:15pm – yup – well and truly rubbish! So when I mentioned further above that us SEN mum’s really like to let our hair down, I’m not sure I can entirely claim that I am very rock and roll after all! Nonetheless I had enjoyed my night and the appeal of my comfy bed and snuggly duvet was strong.

Chugging down plenty of water, I enjoyed lovely sleep until I was roused rather forcefully at 2:20am by some of our crew returning from their escapades. There was much giggling and bouncing on beds, pulling of feet and threats to drag us down to the hotel bar which fortunately had closed until 4 am; although some of the girls were intending to do a “through-er”  – carry on drinking in their rooms and then hit the bar when it re-opened –  sense (or passing out) prevailed and we all met in a well-known pub chain for a slap up brekkie the next morning. I still can’t work out whether it was impressive or vaguely terrifying to see some of the hardened amongst us knocking back Sol’s (beer) at 11am!!

And so our fantastic trip to Carlisle was drawing to a close. Not before however we had raided the local M&S for necessary supplies on the train back. Perhaps one of my favourite quotes from the weekend was uttered in the food hall: “I don’t mean to be funny and I’m not an alcoholic, but I don’t think we have enough booze here to get us back!!” Brilliant.

So once again laden with gorgeous deli foods and Cava a plenty (I think we might have used up the UK supply of Prosecco) we found ourselves homeward bound. The trip home wasn’t to be without it’s adventures though as we found ourselves stuck in Skipton due to torrential flooding which had blocked the line.

Whilst this ensured much hilarity and most people weren’t too bothered when we made it back, I was mindful that my hubby was at work and my respite finished at 6pm so as ever the girls rallied round. Hubbies and partners were mobilised to rescue us and return us safely home (or even to carry on drinking in the local bars in some cases) and we found ourselves back in Knaresborough, a bit cold, a bit soggy but having had a fantastic time.

I’m so grateful to my fellow Mum’s for including me on this adventure and if I agree to put in some heavy duty training on the staying out late party front, I am hoping to get another invite next year…..

Thanks ladies ❤

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