Onwards & Upwards 😀

Well hello! I Haven’t blogged for over six months. 
Haven’t had the time. 
Time…… something I’m almost always late for. This isn’t a New thing. Happened when I was a teen. I’ve got better though. Never more than half hour late….. mostly!! 


But ALL of my time is being taken up caring for and being a mummy to my little toddler ( I say toddler in the loosest of phrases ) as that’s exactly what Dylan is trying to do. 


My 7 year old baby is turning into the funniest, cutest, most loving incredible little toddler. The little boy stuck in the mind and body of a baby is starting to develop ever so slowly, but ever so…….


Dylan by rights should be in Year 3 ‘Juniors’ but instead I’m still continuing to home educate my pre-school aged little boy. 


Dylan’s developed the most wonderful character. He’s oh so funny makes us laugh 24 hours a day ( sleeping is still not very high on his priority list 😴 ) He’s into everything now, he’s even found a love for Peppa Pig and does the cutest little snort when watching her. He picks Peppa up along with the remote and that’s him verbalising what he wants to do. 


He plays with his toys (I say plays. He does a lot of throwing and squashes a lot of potato waffles over his toys, toys like to eat you know!) 

For a non-verbal child he makes a hell of a lot of sounds and communicates by using ‘ ‘Dylan-aton’ (Makaton is far too common 😂) 


McDonald’s, Fruitshoot, sweets and choc (dairy free of course) have all got their own signs. Dylan invented them all and they’re fab. 

Both his Nana’s have their own names. Nana S is Nana Mum (he’s picked that one up from me calling her) and Nana F is Nana Bum Bum (no words!) 

Grandpas Taxi ride to McDonald’s has its own sign but I couldn’t even type what he does. We just know. 
As for Papa, Dylan mimics the funny noise he makes down the phone. So everyone has their own ‘new’ identity. 
The absolute love of Dylan’s life is his big sister Gaga, whom he sits at the front door whilst she’s at school desperate for her to be home. 

Eeeeeeeeeeee (Daddy) gets the credit for clearing up sick. Dylan’s MTX chemotherapy injections make him sick and he continues to tell me daddy clears it up (even though it was me!) Dylan jumps all over Daddy when he gets home wanting to play. 

As for me, Dylan’s learnt to climb on my lap, rest his head on my shoulder and give me a ‘Dylan Cuddle’ I’ve waited over 7 years for this and I happily stop dead to cooperate as these cuddles make me the happiest proudest mummy ever. Oh and when he blows a kiss too, I’m in heaven. 

He’s a quirky little character, loves playing ‘I see’ and literally hits himself in the face covering his eyes. Loves (trying) to do head stands (this worry’s the life out of me as he is so fragile) He points (well pokes, scratches and basically hurts) to my face parts as we learn the eyes, nose mouth etc. But no. Dylan prefers the neck. (Have you ever been pinched on the neck by a small 7 year old. Ouch!) Giggles when he try’s to do the conga, pulling on the back of my top singing La la la. 


He will only drink out of a new orange fruit shoot, has to be Asda teeth and lips and now loves a fish finger. Absolutely loves a shopping trolley and a credit card (don’t know who he takes after??) 


He lay on the floor with his head down if he’s had a seizure and gives a little cry to tell me if he’s in pain. Points to the top of his leg each evening before we inject his Anakinra and goes over to the chair when it’s time for his immunoglobulin infusions. But when it’s time for his chemotherapy he knows this makes him sick and does the sound effect to go with it. 


Honestly the list goes on of how funny our handsome little man is. Our teeny little boy who has the rarest of undiagnosed condition, doctors didn’t think would make past 5 months old, wouldn’t walk let alone sit up. Continues to amaze and inspire me daily. He lights up our lives and we wouldn’t change him for the world. He’s taught us to laugh again and to cherish every single day we have with him. 


It’s Dylan’s Story & he writes the chapters. No one is invincible, every day is a gift to each and everyone of us. Live. Love. Laugh 💙


Please follow Dylan’s Story on Facebook 

Dylan’s Story in connection with the Tree of Hope charity are in our second year of fundraising to build Dylan a safe and sterile sensory room he deserves. To donate Click here

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Knowledge is Power #undiagnosed #UCD #dylansstory

Before Dylan, a SWAN was a large aquatic bird. I had never heard of a genetic syndrome as being undiagnosed. Before finding SWAN UK (Syndrome without a name)


I’ve since found out a SWAN looks like this! (& remarkably can drive a car!!)


I had absolutely no idea we were not alone. 6000 children are born in the UK every year with a genetic condition that cannot be diagnosed because it is so rare. As a parent of a SWAN, life can seem lonely and you can feel isolated, forever seeking answers to endless questions.

In order to raise awareness for the many children, like Dylan, who are living with an undiagnosed syndrome, I decided to take ‘Dylan’s Story’ public. Undiagnosed Children’s Day (UCD) is huge annual event so we rely on as much media coverage as possible to raise awareness. In 2015 ITV News were looking for an undiagnosed child at GOSH and Dylan was selected to feature in their following day’s programme whilst having his Heart Echo. Blink and you’d miss us. Hours of filming and numerous interviews condensed into ten seconds. I was so proud to have been part of UCD and for introducing Dylan to the world.

Later that week, prior to UCD15, Lauren Roberts (National Coordinator, SWAN UK) published a post on social media searching for a family to share their story live on the BBc’s Victoria Derbyshire Show the very next morning. Without hesitation I volunteered. Quick DIY spray tan, sleep in rollers and, voila, we were ready for our 6am pick up. Traffic was horrendous as we nipped in and out of bus lanes in the taxi. We arrived with only seconds to spare, whisked into hair and makeup, had a very brief introduction to Victoria, then we were live on her sofa. I hadn’t rehearsed; it all just came from the heart. Being interviewed about living with an undiagnosed child could be my subject on Mastermind.


Knowing people were watching and receiving their support encouraged me to continue raising awareness. ‘Dylan’s Story’ was born.


As a result of my subsequent blog and Dylan’s Social Media, I was contacted by journalists wanting me to share our story. We appeared in several publications including; the Radio Times, What’s on TV, Channel 5 News, local newspapers (Brentwood Gazette and Epping Forest Guardian),


Articles for GOSH (Patient, Donors and Staff) Magazines,


We featured (stared 🌟 haha!) on BBC’s DIY SOS for GOSH when they renovated a beautiful rooftop garden. To be asked to be part of DIY SOS at Great Ormond Street is such an honour albeit bitter sweet, for Dylan has been a patient all of his life. Dylan had great fun filming though and kept Presenter Nick Knowles and his team on their toes!!


We even appeared on a South American Breakfast show.
Social media has a huge impact on society and even the celebs love to partake! Because of the way society works, Dylan has gained a superfan who we are in ore of. A truly wonderful inspirational lady. Katie Piper we 💖 you.


We live each day making memories and we have made some beautiful memories whilst raising awareness.


We were literally raising awareness across the globe. The more exposure, the wider the audience. My mission is to spread the word #undiagnosed. No one knows what the future will hold for Dylan, but no one knows what the future holds for any of us. Dylan is an inspiration who continually reminds us what is truly important in life. Dylan has created an incredible bond in our family making us who we are: strong independent parents who take what’s thrown at us and make a life out of it.


In today’s age of tablets and smartphones, it is incredibly easy to communicate your story with the world. I urge you, if you have a message you want to spread, publish blogs/ vlogs, and create Facebook/ Twitter accounts. You will be amazed how much support you will receive and, what’s more, learn you really are not alone.


Undiagnosed Children’s Day is a nationwide event on Friday 28 April to increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK, the only dedicated support available in the UK for families of children with undiagnosed genetic conditions.

Last year fundraisers, schools, families, companies and donations raised a (approx) £20,000! With your help this year we can take it beyond this figure. To donate TEXT SWAN11 £3
(or any amount up to £10) to 70070 #undiagnosed

Dylan is also fundraising with an outstanding event.  Bigger and better than last years later this year. I am so exited I just can’t wait, and (all being well!) I will have 2 working legs this time to be able to join in. Raising funds for Dylan’s indoor and outdoor sensory rooms. To donate TEXT DYLS65 £2, £5 or £10 to 70070 #dylansstory

Raising awareness is just as important, if not more so than raising funds. Knowledge is power. Please spread the word (& donate a pound or 2 to both amazing causes. Please! 😘)

🎼Like a small boat on the ocean🎼 

I have been hit by writers block once again with so much going on in my life recently to know exactly what to blog about and where to start is a headache in its self. 

Hearing Dylan belly laugh for the first time in almost a month is the only inspiration I need….. 

From losing his independence because of a nasty arthritis flare up, to having multiple virus’s leaving him lethargic and lifeless, to now hearing him laugh makes me feel all warm and gooey, the love I have for this helpless child is indescribable. 

So the hot question I have spinning around my head is ……

” Why the hell do we keep putting him through all these (unnecessary) intrusive procedures ?? “


For every General Anaesthetic attacks his already compromised immune system, leaving him prone to more illnesses. Meaning his already compromised life expectancy is at risk. 
Having so many underlying illnesses means every time he’s attacked by a virus or an infection all of Dylan’s problems decide to rear their ugly little heads and upset my boy and us all.  

And for what???? 

Every parent of an undiagnosed child can almost certainly guess the outcome of these investigations we put our poor innocent children through. 

” Unfortunately Mr & Mrs Dylan’s parents the results of the recent test show nothing’s wrong “ 

Hmmmm obviously there is something wrong for my beautiful little boy, who is approaching his biggest mile-stone to date, his 6th birthday, is stuck in the body and mind of a baby. 
Yes he has 10 perfect fingers and 10 perfect little toes but he also has more than 

  • 20 horrid diagnosis, 
  • Is under 15 different teams at Great Ormond Street Hospital 
  • Has 4 different Clinical Nurse Specialists, 
  • Is on 15 different daily drugs, 
  • Has 1 weekly subcutaneous (chemotherapy) injection, 
  • and 1 weekly infusion 

all that’s missing is his Partridge in a Pear Tree – his overall genetic diagnosis. 

So yes something is obviously bloody wrong. 

Every suggested investigation brings so many emotions. 
At the beginning we thought 

‘we shall put him through this xxx procedure as it will give us the answers we are seeking’ 

To the next investigation:

‘the last test was wrong now we will get our the answers we are looking forward’ 

to 

‘the last 20 tests couldn’t have been performed correctly at least now we will get out answers’ 

to now, after more than 50 different investigations my left and right side of my brain have its own conversation; 

(left side of brain pipes up) ‘is there any point putting him through all this again to not get any answers’ 

(Right side of brain debates) ‘but this might be the test to answer our prayers’ 


In the mean time if Dylan spends a whole month, following one of these procedures with his health deteriorating and  being rushed back and forth to A&E is any of it actually worth it??? 


So the real question is when do we say enough is enough?? 

It’s not giving up is it?? 
It’s just letting Dylan live with his Undiagnosed Condition for as long as he’s able to and continue to let him belly laugh over the silly little things that make him the happy little chappy he is. 

But please, do not judge me when you read on Facebook later this year that Dylan is undergoing yet another (pointless) investigation. As you never know, “dreams can come true” 

But in the mean time I’ve dedicated Rachel Platten’s fight song to the strongest fighter I know….. Cause I’ve still got a lot of fight left in me 💙


Please don’t forget to support us in anyway you can – September 11th, put it in your diary now for its Dylan’s Fabulous Fun Day It is going to be a spectacular day. Fundraising via the Tree of Hope to help make Dylan’s life simpler. If you are able to donate as little as £1 Dylan would be incredibly grateful. Please click on link above or TEXT DYLS65 to 70070

Until next time. 
Dylan’s Mummy xx 

Confessions of a ‘Shopaholic’ & a ‘Special Needs Mummy’ 🛍

Confessions of a Shopaholic, oops that’s another story, I mean Confessions of a Special Needs (SWAN) Mummy…. 

  

 
(Hubby, please bypass this paragraph it is not for your eyes 👀). Well if I am honest having a Special Needs Child and being a Shopaholic seem to go hand-in-hand for me, for if Dylan is having a good day, to celebrate, I shop 🛍 and if Dylan is having a bad day, to compensate, I shop 🛍. The fact is I shop full stop 🛍🛍 and the fact that I can do it in person in a shop, online at home or on the go from my smart phone at the hospital is just a bonus 🛍 😉🛍 24/7! Fact shopping is therapy. 

  
One of the ‘greatest’ things about being a ‘Special Needs Mummy’ is that it has taught me to become the person I am today. A Selfless, dedicated and hardworking mum who values every single moment of every single day. 

Life is a gift but Dylan is the biggest gift *albeit in the smallest of packaging with no label! 

  

I’ve heard so many cliché statements over the years I thought I’d share with you my ‘Top Five’ I  am sure other Mum’s! (Parents!) of Special children can relate to this…..

  

  • ONE: Special Needs Mums are always asked “How do you cope?? I couldn’t……” 😩

Firstly yes you would!! You would have to, just like I have to. There’s very little choice in the matter. You may think I go above and beyond the call of duty for my special little boy but I only do what is needed to keep him well, happy and here. 

Anyone that says they couldn’t cope obviously doesn’t have to. 

I often hear….

I haven’t slept because my child was (delete as appropriate) teething/being sick/has a cold” (etc. etc.) In fairness if I was to only have one interrupted sleep, I’d feel rotten the following day too. But the reality is I haven’t had a full nights sleep in almost six years……. It’s normal in our unconventional lives

  • TWO: Special Needs Mums are always told 

You need to look after yourself, you need to be well to look after your child……” 🤒

Never had a true word been said, and in theory a walk through the park but in reality it’s a marathon and there really isn’t enough hours in the day to put yourself first. For when the 24 hours in  a day are dedicated to caring for your sick child, us mums tend to slip on to the back burn. *tends to be a slight juggle when a Special Needs Mum has her own health problems. 

We would all love a weekend trip to a Spa once a month or even once a year (*once a decade or even once in a lifetime would be more like it!!) but our kiddies come first. Period!!

  • THREE: Special Needs mums are always asked about………. Siblings and “How does ‘she’ cope??” 🤔

As a parent you want to give equal attention to all of your children. In my case two. But when you are blessed with one ‘Special‘ one and one equally as special but her needs are purely of wanting sole mummy attention, this can be hard (*back to my juggling act). As a Special a needs mummy when their non special needs child is a capable, clever and intelligent ten year old you expect them to do a lot of mondaying tasks but when you realise the tasks in hand are to pass the oxygen and help comfort sibling following watching mummy give home injections, the tasks are not too mondaying after all. It does feel like there is never enough of my attention to go around. No matter how many trips to ‘Smiggle‘ we do!! On the plus side she gets unlimited iPad time whilst I’m on phone to endless Doctors, Nurses and Therapists!! 

  • FOUR: Special Needs mums would have been asked along their journey 

If he doesn’t talk, does he sign” NO! “How do you communicate with him??” 🙄

Communication, or lack of it in our case is starting to get frustrating. Frustrating for our son who at nearly six years old is still babbling the same six sounds he’s been saying for almost four years. Cognitively, not able to sign, yet fully aware of what he would like to ask for. He finds other ways of asking, pointing, grunting, crying, changing tones in his voice, laughing when we get it right and pushing away if we get it wrong. Frustrating for us when when we don’t get it correct first time. 

People automatically assume communication by speech is natural, and generally it is. But in our home it’s not so we have to find our own way to communicate.  

Special Needs Mums have to learn to understand their non-verbal children. It’s just another part of the job! 

  • FIVE: This one only us SWAN Special Needs Mums will have heard…… 
  • “What do you mean ‘he’s’ Undiagnosed??”
  • “When will ‘he’ be Diagnosed??”
  • “How does it make you feel ‘him’ being Undiagnosed??”

And only a SWAN mummy can answer……. 😳

  
Without a diagnosis life can be very isolating. Families often feel like they don’t ‘fit in’ and without a diagnosis it can be very difficult to answer questions about their child. They don’t know what the future holds for their child – Will they walk? Talk? What will their life expectancy be?

It’s been a long journey for us a family coming to terms with Dylan not having a diagnosis. I’ve been through lots of grieving stages for the child Dylan isn’t. 

  • Denial, he will get better, it’s just a blip, the doctors don’t know what they are talking about (all of them!) 
  • Anger, why me, why Dylan, why us, it’s not fair (*throws dolls out of pram)
  • Depression, fed up, can’t carry on, peers all continuing in their ‘normal’ path whilst Dylan is stuck in the mind and body of a baby. 
  • Acceptance, realising we have been blessed with ‘THE MOST’ amazing little boy, one who is unique, a tough little fighter, who is incredibly handsome, very determined, extremely long and happy, a little boy who just takes whatever life throws at him with a pinch of salt. Accepting we are the luckiest parents alive to have been sent this little angel who has make us the strong loving parents we are today. Realising Dylan puts the ‘Special’ in ‘Special Needs’. 

Did you know six thousand children are born each year with an Undiagnosed Genetic Syndrome. Undiagnosed Children are known as SWAN’s. (Syndrome Without A Name) 

  
SWAN is a term used to describe disabled children who are thought to have a genetic syndrome or condition that doctors have so far been unable to identify.
SWAN is not a condition, it is not a diagnosis and it does not refer to one specific syndrome or condition. In fact, the reason that many children remain undiagnosed is because it is highly likely that they have a very rare syndrome or condition.

SWAN is a lifeline to hundreds of families like ours. To raise awareness for Undiagnosed children, like Dylan, this Friday, 29th April is Undiagnosed Children’s Day. It is a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK, the only dedicated support available in the UK for families of children with undiagnosed genetic conditions.

  
So after almost six years of Why, What, How questions we are retired to the fact that Dylan may never get a diagnosis. Even if he was diagnosed it wouldn’t change the daily care Dylan requires. It would be so rare & wouldn’t make Dylan better or change his life expectancy but it may help others in the future which is why we will continue with Genetic studies. 

And so he writes the story #dylansstory  

  
Follow us on Facebook Dylan’s Story

Don’t Worry be Happy 😃😃😃

  

Any parent who has a child who is medically complex means business!   

  
They should have a sign around the neck saying ‘DO NOT MESS! (Especially before our first infusion of the day of caffeine!!) This includes the endless doctors, nurses and health professionals involved in their care that think they might know our children. Without any letters after our names we are more qualified than most of them. 

 

Now please don’t get me wrong, not only could my Dylan not live without their care and input and I couldn’t perform any surgery as they can (although I would happily give it a try), I am simply saying until you have the job, like us caring for your children who are 100000% dependant on you 24 hours a day 7 days a week with no real signs of being able to become any more self sufficient in the future and on the astounding and taxable amount of £0.369642857142857 per hour as a carer, you don’t really know them at all. 

  

Us parents of medically complex children have had to develop a huge sense of humour! Most of the time if we don’t laugh we will cry. That, and a really thick skin. We’ve had to find ‘our‘ main server to switch off our emotions or onto a needs-must basis. Along with appreciating the quality of life and not so much of the material things (oooooooooh always a little room for a designer handbag and sparkly shoes! every girl needs a little pick me up after all!!!) 

  

Welcome to our world!! 
Syringes in handbag, clanging bottles of potent meds, subcutaneous injections and butterfly needles on hand, frustrated non-verbal children, endless hospital appointments, non existent sleep patterns, and scarily not wanting to look to far into the future. Who knows what the future may bring?? and all of us SWAN parents with at least 2 million, 300 hundred and 66 unanswered questions. Number One being; ‘what’s wrong with my child?’ 

  

Now. Statistics I don’t have but out of the medically complex children in this world there are the ones whom, like Dylan are #undiagnosed. This has added plenty more bumps in our already rocky road *definition = A hindrance in some quest or extended task, As most of these children, like Dylan are serviced from the head to the toes. (See I am humorous ha ha!!) 
Getting over 14 different teams, professors and their nurses at Great Ormond Street Hospital all singing from the same hymn sheet is incredibly hard work. This is another part of my job, it’s lucky the salary so good else I’d be on the look out for another one!!!!!

  

Which is why UCD taking place later this month, on Friday the 29th of April is so very important to us. 

  

Undiagnosed Children’s Day is a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support the work of SWAN UK (syndromes without a name) – the only support available in the UK for affected families. 
There are lots of ways you can help support the day – why not change your social media profile picture (to this one below) or cover image and if people ask you what your picture is of, just by you telling them raises a little more awareness for both SWAN UK and Dylan’s Story. #undiagnoed #dylansstory

  

Did you know over 6000 children each year are born with an undiagnosed genetic condition? Before Dylan I had no idea. Nor did I realise it is even possible for someone to be #undiagnosed. This is not always a temporary stage. Families can face a lifetime of not knowing and struggling to access the information, support and services they need for their children. With out a diagnosis these children (and their families) need to be taken seriously. A lot, like Dylan on several genetic studies but because of the rarity still may never get the label they’re so desperately searching for. 

 
Children living with an undiagnosed genetic condition do not fit into any particular boxes. They have no label or title and most have no prognosis no real expectations. SWAN UK is a lifeline to hundreds of families like ours where our children all just seem to fit nicely. 

When doctors say they simply can not answer your burning question it leaves your brain frazzled. 

  
What do you mean you don’t know. You must have treated plenty of children just like Dylan??? 
When we were first told this back on Sky Ward at GOSH when Dylan was just 6 months old we were younger then, much more naive our control was purely in the hands of these professionals whom we looked up to desperately after their help, advise and hope of making our sick little boy better and to put this awful nightmare behind us. 
Thinking the next consultant, our second opinion will have our answers, now speedily approaching 6 years old and with almost 50 health professionals under our belts (not including the 100’s we’ve met along the way) still with no answers we’ve retired to the fact we may never ever get our diagnosis. ‘Dylanitis‘ as it was first joked about at GOSH!! 
Having a child who is a SWAN can leave parents feeling very isolated, not having anyone to talk to with perhaps an older child to see what the future may hold for our little boy can be a lonely and scary place. 

  

Optimism (and prayers) is the only way forward for I am at the conclusion not one single one of us knows what’s around that corner, the only difference you are able plan ahead in yours and your children’s life. For us we are so grateful for every single day and cherish every moment. 
Enjoy today, live tomorrow as it turns into today. Yesterday is a memory to cherish forever. 

  
Being part of the SWAN community has helped me become the strong independent woman I am today. I’ve met some fabulous ladies all traveling the same rocky road as me and some amazing SWAN friends for Dylan. Thank you SWAN UK
Dylan may or may not get a diagnosis in his lifetime but he will always be a SWAN
This is why UNDIAGNOSED CHILDREN’S DAY is hugely important to us. 

Please show you’re support in what ever way you can. 
  

Working 9 to 5 (and also 5 to 9!) 🕐🕑🕒🕓

 It’s been a month since my last one and since then I’ve started many but not had the ‘umph’ or energy to finish one. This worries me as I’ve always got plenty to say……
  

Have I lost my mojo or am I just too busy?? Maybe it’s because nothing significant has really happened. I mean…. 

  • Giving infusions has become part of my routine, in fact, meds have been increased as part of his immunity is lower than when he started. Work that one out #mrtopsyturvey

                  

  • We’ve had so many consultant and therapy appointments they’ve all kinda rolled into one.
  • I’ve had a journalist working with Dylan’s Story but nothing’s gone national. Yet!! 
  • Our charity is ‘still in process’ 

         

  • My gorgeous friend ahem I mean P.A is planning a ball in aid of Dylan. #Watchthisspace!! 
  • The plans for the ‘big build’ are being drawn up….
  • Dylan’s fabulous Lead Consultant at GOSH ‘Prof B(who hates any social media or publicity…. Who I will get to talk when we get our diagnosis!! ???) referred us for the 100,000 Genome Project which we have been recruited for #excitingtimes

  

  • Both Dylan and I have been using facilities at Haven House Children’s Hospice again after a few months off. Unfortunately that ‘stigma’ crept in and scared me but I’m over that now!! #welovehavenhouse. Even Dylan’s big sister has been working on a project there which we are all very excited about #Watchthisspace 

  

  • I’ve been organising a 10th birthday party and a 70th birthday party

   

  • Also, a SWAN UK meet up for UCD (Undiagnosed Children’s Day) 29th April 2016, raising awareness for this day….
  • Oh and I have became a Parent Rep (West Essex) for SWAN UK, a voluntary post offering so many hours a month of my free time. FREE TIME…. What the hell is that??? 

  

(It’s a good job part of Dylan’s condition means he doesn’t sleep, look at all the extra hours in the day I get!!) 

So I guess this may be the reason I haven’t had the time, umph or energy to finish a blog………. 

It’s a good job Mother’s Day is early this year as I am sooooo looking forward to ‘doing nothing’ (after doing Dylan’s infusion of course!!) putting my feet up and being waited on by my gorgeous husband and beautiful daughter. (Watching Dylan make a mess and them clear it up hahahaha who am I kidding) #keepdreamingkid. A fab fun family day with a meal out that I didn’t have to cook will be wonderful. Can’t wait. 

Happy mummy’s day to my beautiful mummy and mummy-in-law, my special friend who hasn’t got her mummy with her on mummy’s day, to all my mummy friends and to the amazing mummy’s, like  me, who have been blessed with the special ones. 💙💗💙💗

  

Cuddle them littlens tightly, most of them don’t stay little for ever 💙💙💙

(Who) Run the World 🌍 ((Girls) SWAN Mummies) 👭👭👭👭

Eeek I did it!! *shouts with a sigh of relief. It’s done. It’s over and I am on the train travelling back to Euston to reunite with the 3 loves of my lives 💙💙💗. Without tears (on my part) with a little wobble (on my part) a whole lot of Facetime and all in the name of love ❤️

  

Separation is desperately hard for me seen as I have never done it, not in Dylan’s lifetime anyway. But when I was asked to attend SWAN UK’s Bloggers Workshop I knew I had to, no, I wanted to go! 
 
Blogging is my tonic 🍷Blogging is my release 🤔 Blogging is my way of sharing the realisation of my world, Dylan’s Story to all you lovelies who take the time to read it and follow our little life adventure 🤗

Firstly, let me tell you how amazingly well my gorgeous husband coped, one full night of no sleep out of the two *he got off lightly, welcome to my world Mr. M!! He even got to take Scarlett shopping, went for a meal with the kids and as exhausted as he says he is, was elated at well how he managed and so was I. *now I know I should be jumping for joy and re-packing my bags but in fact I won’t be doing it again anytime soon so don’t worry mummy’s on her way home! #missedmyfamtoomuch

  

SWAN UK; Syndrome Without A Name means a whole lot to me. Having a medically complex child with no diagnosis is like having a cheap handbag. #nolabel. Now, I am not comparing Dylan to a Michael Kors Handbag *my other love ❤️👜 I am simply saying it’s hard sometimes not having a label for your goods! And after being so involved in Undiagnosed Children’s Day (UCD) 2015 knew it was so important to get on board and help raise awareness (& funds) for UCD 2016 (29/04) 
And boy did I do it…. Staying in Birmingham for two nights! Travelling by tube and train *all by myself #idontdopublictransport #alone 

SWAN UK is a small charity which started as an extension of Genetic Alliance which was established in 2011 with a 5-year grant. Today, SWAN UK has its own brand identity and two prestigious corporate organisations who are in partnership raising money to help this charity whom help hundreds of families. But these alone can’t keep a charity afloat. It’s actually not just money we need. ITS AWARENESS. 

SWAN UK provide support, shares information and increases awareness and understanding of undiagnosed genetic syndromes For children like Dylan. Because families like ours  find it harder to get the help they are entitled to because they do not have a diagnosis *in brief SWAN is fab and do loads for families like us. But sadly 2016 sees the end of the 5-year grant so this is where they need your help. 

  

Yesterday, 13 like-minded, fabulously gorgeous woman, all who write superbly about their own lives with their SWAN/’s and 3 SWAN representatives sat around in a large meetingroom,  technology everywhere, with copious amounts of coffee flowing ☕️, yummy pastries 🍩 and even an afternoon pick me up of Prosecco 🍸to discuss how we can make Undiagnosed Children’s Day 2016 more #outthere *in the words of my daughter! 

  

In my opinion *and please don’t get me wrong, each and every charity is as important as the next to the relevant people but some are just more known and publicised than others and if I could I would give to them all… So, back to my opinion, a children’s cancer charity may find it easier to raise money because there is a lot of awareness and publicity around this sensitive subject. If you were asked you to donate £1 of your hard earned money to help a child with cancer almost everyone who could would. Right?? If someone asked you to donate to #HavenHouse a children’s hospice to help a child with a life-limiting condition you would. Right?? But if I asked you to donate £1 to SWAN UK to help an Undiagnosed child like Dylan. Would you??  There is just not as much awareness and understanding in the general public of the importance of SWAN UK, similar to the lack of support there is for some families within the medical profession *not all may I add. 

The stigma of childhood cancer or a children’s hospice would possibly have a bigger impact on the general public’s heartstrings. But the reality is Undiagnosed Children need even more help raising funds and raising awareness as many of them, like Dylan are life-limiting, complex, medically challenged, non verbal, non mobile…. You get me know. Right??? *there is a just giving link, which can be found on SWAN UK’s website but I am not asking you for your money at this stage, just to think about where you give your money too **thats not to say I won’t ever be offering you the link to SWAN UK’s just giving page

Did you know (in a survey) 5 of the top 10 words used to describe experience of parenting an undiagnosed child are…..

  • Isolated – no other child is like Dylan
  • Frustrated – will he walk? will he talk? Will he ever get a diagnosis? Why us? 
  • Lonely – hours in hospital waiting rooms! Hours in traffic to and from appointments? What feels like hours waiting for your child in recovery.  
  • Anxious – will he have a seizure today? Will he be poorly today?
  • Stressed – do I need to prove an explanation for this *shouts very loudly! 

* Swan mummies and daddies have more unanswered questions than parents of children with a diagnosis and some live day to day unsure of the next 

  

    So lots of talking and listening and taking notes was done and whilst I would like to continue raising awareness for Dylan’s Story and his undiagnosed genetic condition, I will be coinciding this with raising awareness for Undiagnosed Children’s Day which takes place on the 29th April. 

    Dylan’s Story has done a little bit of media but if anyone reading this feels they might know someone in the media albeit news, breakfast shows, radio, Nationals, locals….. I am on a mission, please help by forwarding them Dylan’s Story details after all 2016 marks the year of Dylan becoming the 6-year old baby!! 
    As my train approaches the station and before my feet hit the streets of London Town, to sum up my weekend away, 

    • I have, with my humungous suitcase got a train to and from Birmingham
    • Shared a hotel room with a friend I’ve only met virtually, 
    • Met 12 other fabulous ladies, 
    • Had 2 lovely meals out, 
    • Sat in an 8 hour conference, 
    • Talked till I lost my voice,
    • Had a little bit of ‘me’ time, 
    • Had not one but two child free sleeps *feel worse for it I must say
    • But to top it off, my 3rd favourite man came top in our poll!! #robbiewilliams

      

    So, before I go on my promote, promote, promote mission I’m gonna get off this train, get myself home and squeeze my babies. Mammas a coming for ya x

    Keeeeeeeep Blogging….. (Ps Dylan you’re my favourite!) 

      
    Our busiest, most productive and healthiest filled to the brim festive period is over with thank goodness nothing bad to report. 
      

    Amazingly 2015 was Dylan’s 6th Christmas, not so amazingly he still didn’t have any understanding of meaning or the excitement but he enjoyed it. He enjoyed our manic two weeks of constant fun with family, friends and Mickey.  


    With all that go you’d think it’ll be time for us to settle into a quiet January….. Fear not, January is where it all starts again. For on the final and 12th day of Christmas Dylan ended up in A&E, a little blip but Dylan makes sure he keeps us on our toes. Putting his mark firmly on 2016. 

    Hot topic of conversation in the blogging community so far this year is about a blog about us special needs parents blogging. In so many words it’s a blog about how *’we‘ manipulate our children by blogging about them without their consent and do it for attention. #itsnotusattentionseeking #crippingthemighty #bloggoff (Dylan’s daddy said)

    I wholeheartedly am a mummy of a special needs child with a life limiting condition who has complex health issues and enjoys sharing my experiences. Quite frankly I want to shout about Dylan’s progress from the roof tops but I also like to share the not such good news. #raisingawareness #welcometomyworld  

     Why do it do it? 

    • I blog in hope that I raise awareness for undiagnosed children #undiagnosed
    • I blog so that other special needs parents read my blogs and  can relate to similar experiences. 
    • I blog to get ‘it’ off my chest so I can deal with whatever’s thrown at us next. 
    • I blog in hope that someone somewhere at the beginning of their journey that I am on sees some kind of light at the end of the long tunnel I am still in. #standstillinblackwalltunnel
    • More importantly I blog to see if there is ‘another Dylan’ out there. I want to find him or a ‘Doctor’ that just might have an incline of an answer I hope might get in touch. 
    • But mostly I blog about experiences personal to me and my family.  

    Most of us blog because we find it; therapeutic, informative and to raise awareness. We do not exploit our children, (perhaps if they were able-bodied and verbal we wouldn’t have a need to blog.) We only do it with every good intention and reasonings. 

    I absolutely love reading others bloggers views on being a special needs parents, a lot of which I can relate to, empathise with and learn from. 

    * I speak as ‘we‘ on behalf of the **SWAN bloggers community **I am so nervous but also so looking forward to the SWAN UK Bloggers Workshop later this month. It was be the first time in Dylan’s life I’ll be separated from him for over 24 hours. But that’s another blog. Watch this space. #excited #nervous #SWANUKbloggersworkshop

    So what does 2016 have in store for Dylan’s Story?? Lots of visits to GOSH, Lots of blood tests. Physiotherapy, a new Speech Therapist, continued infusions, exciting new home education, SNAP, Haven House, SWAN meet ups and what ever else is thrown at us. 

    Plus I’d love if 2016 is the year we get to take Dylan to Disney……. 

    As for me I should have been in the circus;  Being a mummy, a wife, a carer, a daughter, a sister an auntie and a friend (not the best one at times I know) 

    • My job has no set hours.
    • No time off 
    • No holidays
    • No sick pay
    • No lunch breaks. 

      
     

      My Job requirements to be a special needs parent require; 

      • A willingness to be available constantly. 
      • Responsibilities include availability to work under immense pressure; 
      • sleep deprivation, 
      • putting my child’s needs before my own, 
      • Provide around the clock care
      • Intake of humungous amounts of caffeine… 
      • Being a real life superhero! 

        

        Role concists of being a;

        • Play therapist, 
        • Physiotherapist, 
        • Occupational Therapist,
        • Speech Therapist,
        • GP,
        • Pharmacist,
        • PA,
        • Nurse,
        • Teacher
        • Chauffeur, 
        • Carer, 
        • His eyes,
        • His ears,
        • His voice 

        Length of contract

        • Ongoing – please g-d forever

        Hours of work; 

        • 24 hours a day 8 days a week.

        Salary

        • £50 odd a week Carers Allowance!  

        Quitting is nonnegotiable.

          

        I take it all in my stride but I don’t claim that it’s the easiest job I’ve ever had. 

        Along with managing my daughters busy social life, running the home, cooking, cleaning, ironing etc. etc. etc.  

        I wouldn’t change a single thing.

        So now dare tell me not to blog about my life, my family and my special son. 

         I have been blessed. 2016; please make it a good one for my Dylan, my superhero. 

          
         

        Twas the night before, the night before Christmas 🎅🏻🎅🏻🎅🏻

        Have you heard of the saying 

        ‘If Mohammed won’t go to the mountain…..’

        Well this is the new saying, 
        ‘if Dylan won’t go to see Mickey at Disney…..'(although this is high on our to-do list for 2016!). 

        This evening we had a knock on our door, carol singers I thought? nope, It was something beyond anyone’s wildest dreams, for it wasn’t even a person…. It was a mouse….. The one and only MICKEY MOUSE…… OMG OMG OMG 

        So if Dylan won’t go to Mickey, Mickey will come to Dylan….. AND HE DID!! 
        This wonderful amazing special fantastic breathtaking experience would never have happened without a very special friend in my life. 

        So now for the slushy bit….

        This friend has been in my life for over 27 years (OMG!), This friend I met on our first day of secondary school, ”This friend, who together, we got trampled on behind railings desperately waiting for our lovely Take That, determined to become Mrs. Williams and Mrs Owen! This particular friend fainted/had an asthma attack in the Green Room at the BBC when Robbie came over to us (talk about stealing my limelight Mrs D!!)

        We have been there for each other through happy times, through some very sad times, our weddings and our babies and more Take That!!. 

        My friend Jaclyn will be in my life forever. 

          
        I know she has for some time been trying to arrange a Mickey experience for my darling Dylan and today she made it a reality. Scheming behind my back, with her lovely mother-in and their friend, a beautiful Pearly-Queen or now renamed ‘our fairy godmother’ to make this magic become reality, and at Christmas time too. 

        Thank you from the bottom of our hearts Jaclyn, Christine and Teresa and thank you to the Original Pearly Kings and Queens Association. 
        A thank you doesn’t seem enough. But just look at Dylan’s face. That says it all cuddling up to Mickey. 

          

        So, it was in fact the night before, the night before Christmas when all through our house Dylan, Scarlett, Angelica and Honey were playing, the laughter was infectious. But little did they know who was on his way……
        Here is a twist on the classic tale and I kind of like this one a lot better! 

        Twas the night before Xmas eve when all through our house. Our excitement was growing, we were expecting a mouse. 

        Keeping our excitement hid from the kids with care.  Hoping Mickey Mouse soon would be there 

        The children not nestled, not snug in their bed. Laughing and playing and dancing instead

          

        And mamma’s with their wine and dads with their beer. Anticipating the knock and the almighty cheer 

        When out on the lawn I heard such a clatter. We jumped from the sofa to see what’s the matter

        Away to the window we tore like a flash. Secretly ready for our Mickey Mouse bash

        We opened the door and to our delight. Not sure if Dylan would laugh or have such a fright. 

        When, what to my wondering eyes stood by my house. But a humungous six foot flamboyant mouse.

          

        With a bag full of presents, so lively and quick. I knew in a moment it must be Mick! 

        With all laughter and screams in the door he came. And he whistled, and shouted, and called them by name 
        Now Dylan! Now Scarlett! Now Angelica! Now honey!  Come on inside and let’s have some funny!!  

        We’ll open these presents with laughter and joy. And for Dylan will have lots of Mickey Mouse toys 

          

          

        And then in a twinkling the room filled with glee. Not just from the children but the adults and me 

        A bundle of Toys he had flung on his back. Presents for the children filled up his sack.

        His eyes-how they twinkled! his ears stood on end. You could see immediately he was Dylan’s best friend!

          
        Not in his clubhouse, but in Ongar was he. In the depth of Essex just to see D

        Emotions run high, tears fell down my face. Because having a sick boy put us in this place 

        Dylan was happy that his friend Mick from the tele. Made him laugh and giggle and jiggle like jelly!

        I thought Dylan might be scared and let out a cry. He laughed when He saw him, I gave out a sigh!

        In A wink of his eye and a twist of his head. Soon gave me to know I had nothing to dread.

        He spoke not a word, but went straight to his work. Handing the children presents, then turned with a jerk.

          

          
        After posing for photos and a few selfies too. He gave me the nod, it was time to go I knew!

          
        He sprang to his car, back to Minnie and co And drove away leaving us all with a glow.

        But I heard him exclaim, as he drove out of sight,

        “Happy Christmas to all, and to all a good-night!”

          

        Simply having a wonderful Christmas SWAN time 🎄🎅🏻

        The Only way is EssexMas SWAN stylie  
        SWAN kids go Krazy at Krazy Kids 

           
         
        At this magical time of year theres no better time to have a SWAN get together so when Lauren asked me to arrange an Essex Christmas gathering I immediately said YES

          
        Because I have soooooooo much free time??? and must be completely bonkers I set to work. 

        I wanted something small and intimate, somewhere clean, warm and indoors, Easily accessible from M25 & M11. 
        A hall? Toooooooo big………

        A restaurant? Tooooooo noisy……….

        Soft Play? Juuuuuuust right!! 

        And at Only the, best, soft play in Essex – Krazy Kids Cafe !!!

        Next on my to-do list; a Santa, and due to unforeseen circumstances we had to find a very last minute replacement. Who better to take the job than my dad. Never have I laughed so much as my daddy doesn’t really resemble Father Christmas in any way what so ever – especially now he’s on his strict diet!! Hahaha!! Although sounding more like Mr. Bean than Father Christmas, he was perfect for this job & done me proud. Well done Daddy Claus. HO 🎅🏻 HO 🎅🏻 HO 🎅🏻
          

        Carefully choosing individual gifts for the children’s development ages as opposed to their chronological age along with gifts for their siblings. Awwww seeing their little faces when Santa gave them their presents completely melted my heart. 

        These children, our SWAN’s, put the Special in Special Needs. Beautiful inside and out. 

        Scarlett & Gracie were two beautiful santa’s litter helpers, Santa couldn’t have managed today without you both.  

          
        Now for our make-shift grotto…. Thank you to the Ongar Mums Group (OMG) for lending their grotto props. Large Lollypops and CandyFloss. I felt like I was in Charlie and the Chocolate Factory as they’ve been in my hallway for over a week. Secretly I’ve been dancing and singing ‘Come with me and you’ll be In a world of pure imagination Take a look and you’ll see Into your imagination’ 

          

        No party is complete without an honouree face painted Superhero! A huge thank you to Lyndsey who has given up her own time to paint our little SWAN’s, their siblings and all the mummy’s. Even Dylan’s Nana too got painted! 

          
        Meet my new friends…. Sarah; my lovely little co-elf, baking cakes & putting mine to shame!! My virtual partner in crime lol!! 

          

        Donna, Corrina & Lynette you lovely ladies. I am so pleased to have met you, your hubbies and babies. Together we make up the ‘Essex SWAN Crew!’ The Only way is definitely Essex!!!! 

          
        But none of this would have been possible without our Lauren, everybody’s best friend. This lovely lady spends her life living out of a suitcase, travelling up and down the country, arranging, organising and coordinating nationwide. I am so pleased you made our party and hope you like your special Swan Christmas prez. 

        Huge thank you from Dylan & me for being with us and sharing some of our huge experiences this year. 

          
        So that’s all the prep and thanks done. Here’s how our party went…. We are lots of cakes, we drank lots of coffee, all the mummies had their face painted, all the kiddies laughed and played making new friends with a common interest; their Swan siblings, us adults made new friends, we’ve made New Year arrangements, ate some more cake, then ate some party food, had selfies, group photos, met ‘the real’ Father Christmas 😉. Had a bit of a boogie to Little Mix, pulled crackers and generally had a ‘Wonderful Christmas Time…….’