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 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  or the 100,000 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 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:






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:

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…. 😊

These are my salad days….

Once upon a time there was a person called Mum. Mum originally had a name but Mum had ended up having so many children that she was now just known as Mum or for a spot of variety: G-Man’s Mum, Minx’s Mum, eldest teenager who must not be named’s Mum, Famalam (a whole new level of confusion brought about by the “yoof of today’s” obsession with roadman speak) and other variations on a similar theme.

Mum suspects that her local authority may also have some pretty choice names for Mum but they are unlikely to be printable (or provable!) here and that is a story for another day.

Before Mum actually had her own children, she was actually a very good mum even though strictly speaking she didn’t qualify for the title role. At that point in her life she only had 2 tri-coloured cats so unless you considered the phrase “who do you think you are, the cat’s mother?!” applicable, she was reaching somewhat.

It turns out it’s much easier to be a brilliant Mum when you have imaginary children (and real cats) and only occasionally baby-sit other people’s or smirk at other parents whose children are having a public meltdown, smug in the knowledge that you could do the job SOOOOO much better.

However, Mum knows that she was indeed a very good mother pre children because in those halcyon days she spouted such wisdom’s as “There’s no reason at all that ANY child should have a crusty/snotty note when its so easy to wipe with a tissue” or “my child will eat all the things we eat, just in smaller, less seasoned versions.” She also proclaimed  sagely to her fellow thinking- about-becoming- Mum friends that children wouldn’t really change her life as it was so important that children learnt to be adaptable and behave in all manner of situations, accompanied by a tinkly little laugh. Mummy was indeed the epitome of smug…

Then Mummy went ahead and had THE CHILDREN. Mummy wasn’t entirely daft/(un)lucky to have 4 little darlings all at once. No, she thought she would spread the misery joy over a period of years. And then they all lived happily ever after. 

So child number 1 was born and Mummy spent her days between feeding/crying/elation and exhaustion with her head buried in such bibles of wisdom as Annabel Karmel, Penelope Leach, What To Expect the 1st year, Toddler Taming and other such patronising fabulous tomes of parental guidance (no I don’t mean the film category) so that she could qualify as The BEST Mum EVER.

Since I don’t want this to be a bedtime story that bores you to sleep, I’ll spare you the blow-by-blow account of children 1 through 4’s every waking moment as it goes on for many (many, many, many) years but one skill that Mummy found accompanied her through the early childhood years and surprisingly still lingers today is something called THE GUILT.

Guilt was and is her ever-present ‘frenemy.’ It’s amazing just how guilt can raise it’s cocky little head at any given moment and Mummy feels sure that if universities offered degree courses in it, she would have more than qualified for not just a BA (hons) but probably an MA and possibly even a PHD too!

Mummy you see very early on discovered that guilt was there to keep her occupied in the small hours of the night (why does this child never stop crying/screaming…have I broken it?? Did I actually want a child/ren after all?? ) and was especially good at loudly shouting when she pontificated if her children had an off button once they had found their annoying dear little voices that she had waited so patiently for to utter their first babble.

Guilt was there when Mummy went back to work for the first time and everyone else she knew was a stay at home Mummy. Guilt joined her when she resorted to controlled crying. It sat heavily on her left shoulder (I’m pretty sure that’s the explanation for all the pain in her neck anyway) as she sat with her fingers in her ears when at her wit’s end she decided to try controlled crying in sheer, utter desperation. That didn’t go very well to start with as Mummy was unable to control HER crying and it very nearly became competition as to who would tire out first…..

Over the years Mummy learned that THE GUILT had an uncanny talent for sneaking up on her at times she would least expect it. Mummy thinks back and wonders if THE GUILT is what is responsible for driving her to wine every night…then she remembers an interview on early morning television that suggested that if you have a glass of wine every night – even if it is only the one – that you are actually an alcoholic and THE GUILT laps it up. It has a very good appetite does guilt and it isn’t picky what it feeds off.  Mummy tries not to let it be an appetite for destruction and I am pretty sure she isn’t referring to the Guns ‘N’ Roses album of the same name…..

One of the things THE GUILT has an extra special relationship with and most likes to taunt Mummy with is THE FOOD; specifically feeding THE CHILDREN.

Mum studied the various Anabel Karmel books from cover to cover and invested in more ice-cube trays that you can possibly imagine  – originally for the purposes of storing and freezing micro amounts of home-made, pureed baby food in but now mostly used for the ice in a gin and tonic.

Over the advancing years she resorted to google too. Technology being handily available at all hours meant she could consult this oracle getting tips on baby led weaning et al and make notes about delicious recipes even in the middle of the night!

Nonetheless, it appears that Mummy’s precious darlings weren’t reading the books and despite being capable of reprogramming the Sky box/DVD recorder etc (something Mummy still struggles with today) definitely didn’t seem to understand the guiding principles and ethos of those internet articles showing happy, smiley pictures of  babies/toddlers eagerly scoffing down quinoa and edamame dip, chia and lingonberry smoothies and that piled on the guilt still further.

Mum is pretty certain even over 10 years on G-Man still hasn’t forgiven her for the polenta/spinach loaf she lovingly created (what was she thinking?!) When served he deigned to take the teeniest of mouthfuls, then threw it disgustedly as the freshly painted wall. Mum watched in dismay as it “walked” itself over and over like a possessed rubber man toy down the wall to land with a splat forlornly on the wooden flooring. G clapped delightedly at the ensuing greasy slime mark.

You see, back in her earliest (judgemental) Mum days, Mummy made a solemn vow to promote healthy eating choices and to cook all organic, exciting, varied meals with plenty of vegetables from scratch! She thought that manufactured baby foods were the devil’s spawn.

Mummy didn’t quite think this through however with baby number 1 as she had gone back to work near enough full-time, was still having to get up for feeds in the small hours and was pretty much totally exhausted after a day at work away from her precious one (child, not wine for the avoidance of doubt).

Very quickly Mummy discovered that if she spent all her waking hours peeling/chopping/boiling/mashing and pureeing, it left very little time for doing anything else, especially playing/reading and interacting with her dearest first born…and that made Mummy feel MORE GUILTY than ever.

So Mummy got the stick out of her ass  relented and decided to buy some JAR FOOD thus freeing up some of her time and hoped that it would assuage some of THE GUILT. Surprisingly at times, this seemed to quite nicely pile on THE GUILT and Mummy may or may not have decanted jar food into baby bowls and sprinkled a few cubed bits of veg on to the top when she took it to nursery in keeping with the (myth) homemade baby food plan that she had…

Child number 2 helped Mummy on her journey with THE GUILT by being sensitized to dairy proteins once she had given up feeding herself  and put him on formula. This took the form of eczema so horrific that child 2’s back would weep open sores which made him very sad and cranky and the stealer of all the sleep for months at a time. He also started with asthma at the same time. Co-incidence? Possibly but it accompanied her special friend, guilt, very nicely.

Mummy subsequently found that an extraordinary number of every day items contain milk or dairy in some form or another and therefore spent a great deal of time of her time reading labels in supermarkets and working out how she could make alternative versions of favourite pasta sauces that Child 1 would also eat so that she wasn’t cooking herself into the ground and could at some point attempt the art of conversation with The Daddy. Mummy is pretty sure that at some point the art of conversation led to child number 3 but at that place in time she was so sleep deprived she can hardly recall.

Child number 3  – G-Man – had extremely horrible, painful reflux. Mummy knew this by the high-pitched screaming and the contorting and jerking of his back that exhausted his poor little body. He was also able to vomit at will, projectile and prolifically, even hours after a feed.

The Daddy didn’t really believe the Mummy at first when she insisted it was more than a bit of baby puke until he witnessed with his own eyes the baby upchucking so violently it hit 4 separate walls, the floor and the ceiling all in one go. Mummy was just waiting for his head to start spinning in the style of The Exorcist but at that point the Daddy had seen enough and agreed baby G should see the Doctor.

After several bumps in the road, poor baby G was hospitalised as his blood tests showed his chemical balances were completely out of whack and the medical bods suspected a condition called pyloric stenosis.

A few days of tests and investigations disproved this and thus began the ‘interesting’ journey of trying to get infant Gaviscon powder into a breast-fed baby.  This was not in reality a very fun game and by the time The Mummy and The Daddy had actually mixed it up, spooned it in, chased it back into the mouth from the drooly-chinned screaming baby, he had cried so much and gulped down so much wind, it all seemed pretty much pointless anyway.

Mum and Dad were assured he would grow out of it and that moving onto solid food would be the making of him. He didn’t and it wasn’t. There isn’t a single baby picture of him for the first 3 years of his life without a bib in situ.

Fast forward many years to present day, reflux is still hideous and painful and despite the maximum doses of antacid medications and motility speeding drugs, G Man has ended up being fed by a naso-gastric feeding tube since last October and no one is quite sure where this is going….Certainly the last 3 months of paediatrics appointments have shown he has lost weight, albeit very small amounts, and the medical bods are again scratching their heads as to the best way forward.

Child 4  – Minx – for a variety of reasons was born at a time that had been accompanied by much stress and worry. In her early weeks of life when her numerous difficulties and quite significant medical issues became apparent, Mummy was pretty sure that THE GUILT was responsible for what had happened and that made her feel it even more which was a bit counter productive in the end.

Minx’s first foray into actual food rather than breast-feeding definitely didn’t go to plan.  Frequent chest infections, coughing and choking during feeding, poor weight gain and a seeming inability to maintain a good suck reflex meant she had been assessed by a speech and language therapist (SALT) by the age of 4 months.

After listening to her feed via a stethoscope, the SALT was concerned enough to ask for a video fluoroscopy to be carried out. A video fluoroscopy is a form of x-ray imaging which examines the mechanism of chewing and swallowing using barium sulphate and this is  added to a variety of foods and drinks. Tasty… Whilst eating/drinking occurs, a series of images are taken at different stages and the barium makes it easy for the radiographer and SALT to view what is happening and pin point any areas of concern or difficulty.

Although the test is not in any way painful or invasive as such, since the body is exposed to radiation, it is not something that is undertaken lightly, especially in very young children.

Since Mum and Dad were very new to the world of special needs, they hadn’t really absorbed the ins and outs of it all and were most definitely in a haze of unaware, uninitiated denial. They certainly hadn’t thought through the why’s and wherefores of how this test would be carried out. In fact, since it was scheduled at short notice, they hadn’t even been given a leaflet or chance to look it up on-line.

On the day itself, it became apparent that getting barium liquid into a child who was solely breastfed, had never taken a bottle in her life and had no experience of “eating” not even a taste off a spoon was going to be interesting problematic.

Fortunately as both parents were present, The Dad was promptly dispatched to the nearby pharmacy to pick up a ready sterilised bottle, formula and jar of pureed baby food so that the procedure could get underway.

For many parents, no matter what number baby you are on, their first foray into tasting food off a spoon is a moment to be cherished, photographed and exclaimed over delightedly.  Watching a baby’s varying expressions of suspicion, doubt, grimace and/or delight is usually a fairly monumental occasion.

This first tasting experience in a freezing cold, sterile in more than one sense of the word, environment was somewhat marred; a most inauspicious start.  Suffice to say it didn’t go well on multiple levels; not the least of which were exacerbated by the SALT and locum radiographer having a bit of a barney difference of opinion about whether it was acceptable to expose such a small baby to radiation from the procedure.

I think I did promise further up that it wouldn’t be a blow-by-blow account of each child’s developmental journey…. I seem to have spectacularly failed on that front as this piece is already much longer than I had anticipated when the mood to put pen to paper or rather finger to keyboard originally struck me, so I’ll try to get to the point of why inspiration struck to write the dang thing anyway.

Mum remains nagged insistently by THE GUILT and despite all the reasons she should know better has endeavoured to continue making as many delicious,  varied home-cooked  meals as she can possibly muster….that of course is between the myriad of appointments/admin/general assorted crappery that comes from managing 4 children with additional needs and the day-to-day running of the house.

Contrary to at least half of the children’s falsely held beliefs that Mum spends ALL DAY every day on Facebook, Mum was inspired watching Gino D’Acampo on a well-known known morning TV show (whilst doing the ironing honestly and not at all checking out she of the Willoughboobby’s fame fabulous wardrobe – total lust envy ) talking about a family favourite meal from his childhood which was so easy and so delicious and could be made up from leftovers too AND incorporate all sorts of hidden veg! Genius!

Mum watched Gino and crew waxing lyrical over various stages of the preparation and thought to herself how quick and easy, cheap and HEALTHY it all looked.  Indeed her own mouth was watering and discovering that she had near enough all of the ingredient already in, save some courgettes and the conghiglione (that’s large pasta shells for the likes of you and I) Mum vowed to pick up the extra bits for dinner. *

Several shops later, Mum had scoured the local area for the blasted conchiglione without success. Waitrose had a blank space on the shelf as did M&S (although a price tag revealed that the shells were over £3 for a mere few hundred grams!!) and Ocado had plenty of alternative suggestions but nothing useful. If Mum had stopped to think for a moment, she should have realised that this was a SIGN and stopped right there and just served up some chicken nuggets goujons with nutritious vegetables chips.

Mum however was still lost in a thought- haze of smiling, pink-cheeked grateful children thanking her for such degustation and how the dinner time conversation would flow with abandon about all the new and varied food stuffs they would try together.

So Mum went to the overpriced deli and purchased the conghiglione then set about this veritable feast of gastronomy. About 2 hours into the process Mum reflected that the ba**arding recipe hadn’t looked nearly so time-consuming and complicated on the TV, forgetting of course that Gino had one of those handy “here’s one I made earlier” bods for at least 3 stages of the process that had been condensed down to a 10 min slot on TV.  Nor had Gino used every single item in the kitchen as she appeared to have done. Mum surveyed the unholy mess surrounding her with gritted teeth but glibly anticipated the raptures of delight from her children and knew it would all be worth the end result. She did however decide at that point if she was ever going to make this again she was bloody well going to buy béchamel sauce rather than make it from scratch!!

Fast-forward to dinner time, and the family gathered expectantly round the table, Mum anticipated their reactions excitedly. It certainly looked fantastic and smelled amazing! Plates were piled high and for good measure Mum had made a large salad and served some garlic dough balls on the side as an extra treat.

Child 1 promptly reminded Mum that he didn’t eat pasta (except on camping trips with friends as a “necessity”) and mooched off to make himself scrambled eggs. Child 2 wasn’t home and child 3 point-blank refused to eat anything. Sigh. All hopes pinned on child 4, she did at least raise a spoon to her mouth….then informed Mum that actually she “wasn’t a big fan of this muck” and would just stick to the dough balls, salad oh and the shop bought orzo pasta ready salad in the fridge

Mum could have just put her head in her hands and sobbed but she was far too busy shovelling in mouthfuls of the food to care at this point and The Dad seemed to be enjoying it anyway.

The dog put his paw lovingly on her knee with big, pleading mournful eyes and told her without the need of words that he would happily scarf down any portion she was willing to give him.

Although Mum has a STRICT(ish) ban on feeding the dog from the table, she did briefly contemplate putting something on his own special plate….and then she remembered it contained onions which are very BAAAADDD for doggies and cheese which was the equivalent of about 5 hamburgers or something  so she had read in the vet, so that was that.

Mum has learned many a valuable lesson from that last venture into making meals off the tele…..and she won’t attempt it again for a while….but she might just tell the guilt to do one…at least temporarily….

*in case like Mum you fancy trying the recipe it’s this one:

Mum made the largest quantity using the vegetarian option and also used up some smoked salmon & sauce in some of the other shells. Note if you are serving strict veggies or those with dietary restrictions eg Kosher/Halal, you will need to substitute the pecorino or find a vegetarian version.


(Wo)Man’s best friend ❣️

This is a post I didn’t think I’d write for many years to come. One I shouldn’t even be thinking of composing. It’s not right. It’s not fair but here it is.

I am also acutely aware that this ramble may be perceived as very self-indulgent. Far too many of my good friends have lost their children. I would not dream for one moment of comparing my grief to theirs. But nonetheless the sudden and very unexpected loss of our much loved dog burns white hot and I am hollowed out with sadness. For all intents and purposes, our pup was a fully paid up 7th member of the family. Well technically 8th I guess if you count the cat. (We do love her too!)

If you have read any of my past blogs, you will know some of the difficulties and battles our family has faced over the last few years.

Whilst it’s not a competition, no top-trumps fest, the day to day demands of medically complex children, the amazing quirks but also relentlessness of autism, endless appointments, clinics, surgeries, battles for and with various agencies and services takes its toll. You Buddy (or Sir Budston of Burnarrrr as we sometimes referred to you!) my wonderful little dog, helped alleviate some of those burdens.

Please don’t misunderstand me. I recognise there are many people, probably some of them reading this, who would give everything they have and then some to be facing those same fights and difficulties I mentioned, having lost their precious loved ones far too prematurely; but oh my boy, I thought we had so many long and happy years ahead; wondrous walks to stroll/pad through, delightful or disgusting (depending on your perspective) smells to sniff and cuddles on the sofa to sneak in at any and every opportunity.

Buddy, much admired by all who met you, faithful four legged companion. How can we only have celebrated your birthday a month ago? How can it be that we never even made it to a whole year of you being in our lives, in our home?

You were my birthday present almost one year ago. We had talked about having a dog for over 5 years before taking the plunge. A bit like having a child, it was never quite the right time to introduce a dog to our chaotic lives.

Enlarging the family, moving house, redundancies, working abroad, relocating and leaving the island of my birth and the only home our children had ever known followed by house rentals before finally having a settled(ish) house of our own.

Quite out of the blue and having been a steadfast, most resistant party, I’ll never forget the day my hubby, Martin, turned to me and asked if I wanted a puppy for my birthday!

Minx was about to go into theatre for surgery number whatever and was giggling woozily from the pre-op medication. I recall being so taken aback I asked him if he had actually downed the pre-med instead! I was ecstatic and not about to give him time to change his mind.

Although it had been a long time coming, I knew exactly what kind of dog would suit our family, our crazy-hectic-bonkers lives and had done quite a bit of research in the hope that one day… maybe…just maybe… we would be lucky enough to have a pooch of our own.

We saw your picture first and a flurry of emails were exchanged before THE BIG DAY: your homecoming; my 40 something birthday. The moment I picked you up, cuddled you to me and laughed at the thought of putting you in the enormous crate in the back of the car, you filled our hearts so entirely. The void you leave behind is a chasm of epic proportions. I don’t know how or if ever it can be filled.

It doesn’t seem possible that I’m writing about your passing over the rainbow bridge when we should be looking forward to so many more years of mischief and mayhem. More days fretting about what you might have managed to scarf down if one of us wasn’t quick enough to stop you – I lost count the amount of Lego I scooped up just in time; how many bits of this and that I retrieved from your doggy jaws. Your quivering nose whiffling along always seeking out, questing and foraging. You could smell a dropped blueberry from a 100 paces and hear the rustling of the treats bag in the kitchen no matter where you were in the house or garden; a pretty useful tactic when you were being cheeky and not wanting to come to us when called!

You brought so much happiness. Joy, laughter, giggles and fun. And so much poop too! Martin tells me he cleaned up 12 doggy bags worth yesterday. Considering I last did it on Saturday morning and yesterday was only Wednesday, that’s quite an achievement. Especially since you were nil by mouth from Monday night on. And you were at the vets all day Tuesday….

We joked it didn’t feel right to get rid of all the 💩; perhaps we should create some poo-based monstrosity altar dedicated to you? Your legendary pooping out an entire, intact nerf bullet still makes me smile now. (NB definitely not to be encouraged responsible readers/dog owners – the children learnt the hard way that I meant what I said if they left things like Lego/nerf bullets lying around = bin)

A lot of expectation on such stumpy little legs. Not just the 6 people in your immediate family cuddling you, loving, and petting you. So many people that had the pleasure to meet you – our favourite coffee shop by the river and all the employees therein, our lovely groomer and her dog Poppy, friends and family and the seemingly never ending stream of delivery people with medical supplies or equipment, Amazon deliveries and so forth. Always an action packed day in this wonky-old household and you always ready to greet them with a deep woof, occasional bark and a wave of your magnificent plume of a tail. We often remarked your tail was bigger than you! It looked like it should sit in pride of place on a hat worn by one of the 3 Muskateers. And now I have a small piece of it saved in a memory box to remember you by. It smells still of the grooming, pamper session you had just last Friday. I’m glad it is of that and not the clinical smells of the veterinary practice, their kindness not withstanding. Your grooming sessions over the year cost more than my haircuts!

You were my secret keeper extraordinaire. Too many nights I muttered oaths into the top of your sweetly curling fur when dealing with the latest co*k-up from various services, be they special needs, medical bods or utility companies. So many times I poured out my heart and soul to you, you listening attentively with your head on one side, adopting the classic cava tilt that all other cavachon owners will recognise in its uniqueness. When I was saddest you snuggled that bit closer. When I was happy you were delighted that there were extra treats and cuddles and when it was all just a bit too much, you expected nothing but ensured your presence was always felt.

We joked often that you were not so much a dog – more part goat, part sloth. Your dislike of vigorous, brisk walks was the cause of much frivolity and it was remarked upon more than once that you were the perfect companion for a fair-weather not terribly exercise motivated owner such as myself. Too many times at the site of your harness and lead you would feign sleep or rush back to your bed refusing to come out, especially if it was cold. and dark. and raining. and there was a ‘Y’ in the day…..

Of course now I know my darling boy, you weren’t just faking it; you weren’t trying to make me feel better about the dislike of walking in the 4-seasons-in-1-day climate of Yorkshire. You were tired. Your little body was constantly battling a build up of toxins that in the end would be your downfall.

I try to take comfort from the fact that you are no longer suffering. That we could afford you the peace and dignity that is so often missing when our human loved ones are terminally ill. It makes a small dint in my grief.

At the moment there is too much sadness in this household. Too many reminders everywhere we look: your water bowl empty, toy box neat and tidy, not strewn all over the kitchen. Your place on the sofa vacant. I think even Tilly the Cat in her own feline way misses you; after all she can no longer take a swift munch out of your breakfast or dinner when she thinks none of us are looking.

Members on a wonderful Facebook web site I belong to for cavachon lovers have provided me with enormous support. An out pouring of love, empathy and sympathy. A stunning bouquet of flowers was delivered from them to me today. It made me cry again. But the tears were underscored by gratitude too. After all as Alfred Lord Tennyson said it best: “Tis better to have loved and lost than never to have loved at all.”Buddy 04/10/2016 – 14/11/2017 🌈❣️


How do you sleep at night… part 2 😡😡

I’m a bit less ranty today but no less passionate so let’s get this done and written before I lose my impetus… never mind the will to live. 

I like to think I’m currently  channeling my inner Taylor Swift and her pals in the Bad Blood music video: 

(*above image may be subject to copy-right) 

But in reality I should be so lucky. I’ve spent far too much of the day with my youngest son on a hospital ward, wallowing, sat on my butt, scrolling social media and eating chocolate. Less Swift, more sloth;  I can feel the helplessness wanting to swallow me up; shut me down again. 

(sorry sloths everywhere who are probably outraged at the comparison) 

I’ve been extremely touched how many people have commented/got in touch or shared my previous post. Thank you. 

I wish what I had written didn’t resonate with so many but I am also grateful for the support and the sense of solidarity. 

I recognise the issues facing my family are far from unique. Judging by support groups I belong to, friends, social media and so forth, this utterly deplorable battle for services to provide and protect those most in need, those who don’t have a voice of their own, those with the least ability and energy to fight are being waged up and down the county. 

Whilst the difficulties faced may be slightly different, they all share a common denominator: the vulnerable, those in crisis, those society should be protecting and empowering. 

Forgive my Whitney Houston moment but our children ARE the future and if we don’t invest in them and secure the best possible pathway, what hope is there for society moving forward? 

I also know the elderly, infirm, mentally unwell and so on deserve their cause being championed in the same way. 

I recognise on a deeper level my attitude is simplistic and that something policy-wise, fiscally, has to give or change dramatically going forward. 

How do we achieve this? I don’t know; I never professed to have the answers as to what this should look like in terms of the bigger picture. 

All I do know is a seismic shift is necessary, society is screaming out for it. How we approach this, how we can achieve it is for somebody/ies far more qualified than I. (Otherwise I probably should be standing for government….🤔) 

The demands of a large, aging population who are living longer, the epidemic of obesity, drugs/alcohol/cigarettes, the advances in medical science meaning those who once would have met their maker because of cancers, heart disease, prematurity of birth and the terrifying increase in the so far unstoppable dementia are well documented. There can be no escaping the fact that expectations and demands for provision will increase year on year. 

All the while the funding for front line services is being reduced or in some cases done away with all together. Departments asked to find millions in cost savings, balance the books and yet still pull it out of the bag, somehow. 

Morale is at an all time low as evidenced by the mass exodus of Doctors, nurses, emergency services and so forth. 

I’m not naive. I know the country is on its knees financially and floundering in uncertain times: Brexit, the future of the NHS and government but the refusal to engage, instead throwing up wall after wall, challenge after challenge means there’s less money in the pot to provide even the most basic of services. 

Is it just me and people like me that can see the irony in money being spent on disputing and denying care instead of the care itself? 

We are informed of cuts to services/benefits/ grants every time we switch on the tv, open a news paper.  The effects of austerity on all aspects of social care, health and education (and of course the ripple effect on our police force, armed forces and such like) have been hiding in plain sight for many, many years

Why is it that the major political parties seem far more invested in scoring points at each other’s expense and plotting a coup to oust their leaders than implementing change and securing services for the greater good? 

I want to believe the bean counters genuinely care, that there is an appetite for change but they have become so blinded in covering their backs, their departments and their funds, (actually the tax payers funds) they have forgotten their original purpose. The other alternative: that they enjoy the power trip, playing god and causing abject misery has to be some dystopian fantasy…. doesn’t it?…

I do know that continuing with this ostrich style approach, riding rough-shod over those of us trying to cope day in, day out and strangling us in a bureaucratic nightmare, (presumably in the hope that parents/Carers will give up) ISN’T helping. 

If as much effort and emphasis was put into providing and fulfilling services, identifying and enabling children, parents and the wider family before they reached crisis point a great deal more would be achieved. 

I can’t help thinking that in fact the overall financial outlay would ultimately be a lot less, nevermind the impact and fallout on the family which ultimately add to the spiralling costs. 

How much do local authorities spend on retaining expensive legal council, defending cases and when challenged by parents on the attack, concede a case with moments to spare? The costs in such situations are not merely financial.

Whilst I cannot go into the ins and outs of our case in detail at the moment (until we receive the decision of the SEND tribunal I don’t want to prejudice any outcome) I can relate some of the damage and the wider implications the delays have caused us so far: 

  • Inability for autistic child to access mainstream education since March 2016 resulting in high levels of anxiety, depression leading to self harm and suicidal idealisations necessitating multiple in patient/out-patient hospital stays
  • Provision of interim specialised education package with 1:1 staff ratio/on occasion 2:1 to provide up to 2 hours study per day (where possible round child’s anxiety) 
  • Child unable to access GCSE subjects/make option choices
  • Involvement of multiple agencies on numerous occasions – police, accident & emergency, CAMHS, children’s social care, Young Carers, autism out reach, fostering team and foster carers
  • Local authority (LA) assessment and review officers to prepare EHCP, take information to specialist information panel on multiple occasions, liaise between relevant parties, issue consultation paperwork to potential schools 
  • Assessment of child by educational psychologist for local authority 
  • School transport (single occupant) with escort to ensure autistic child safely taken to and from school
  • Maternal mental health crisis triggered, medical intervention required,  inpatient psychiatric care for 3 months, multiple medications and therapies
  • Community care package to support maternal mental health, crisis team management, out of hours services 
  • Care package from disabled children’s team to provide direct payments in support of care for medically complex child thus enabling sole breadwinner to continue to work 
  • Emotional support to other children in the family necessitating pastoral support, teachers from 2 separate schools reporting back on children’s well-being and attending looked after children’s (LAC) team  meetings, approximately every 6 weeks
  • All children in family requiring support and intervention by CAMHS  to address trauma and ongoing psychological fall-out
  • Family engaging professional legal team and independent educational psychologist to prepare case for tribunal
  • LA engaging in-house legal advice and support
  • LA acquiring professional legal counsel to present at tribunal
  • Convening of independent tribunal and panel member(s) in official court to hear evidence from family and LA surrounding case 

How much does all of this add up to? This is not an exhaustive list and no doubt  there are things I have unintentionally missed/forgotten but I think it is a fair representation. It’s pretty depressing reading isn’t it?  

Has what I’ve detailed shocked you? We are just one family in a cast of thousands, dare I even say millions. 

Unless you or a loved one need to avail yourself of services, you assume it happens to others; not to people like us. 

We are now the others. 


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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Source: 50 Humorous Top Tips For Cleaning Up Vomit…affiliated with BAD HOUSEKEEPING…