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¬†ūüí©ūüí©¬†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 Р 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¬†ūüėȬ†Or tell me your own personal sanity savers and maybe I’ll see what else I can try!

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Same but different….rare as Unicorn ūüí©???

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 Р 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.¬†‚Äėa rare genetic disorder‚Äô,”

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 РDeciphering 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‚Äôm 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 ūüôĄ 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.ūüė≥

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…. ūüėä

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 ūüôā

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 ‚Äļ Other

Thank you ūüôā

 

 

 

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. ūüėČ ¬†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 ūüôā

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?!

 

 

 

 

 

 

 

 

D-Day….Red shoes Part 2…

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

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

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

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

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

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

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

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

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