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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The ‘P’ Word 

The ‘P‘ word, let’s call it ‘potato‘ 

Isn’t it strange how one simple word can make you quiver 

There’s a few I can think of but one new one has become part of my vocabulary this week. 

PALLIATIVE (care) 

The word yells ‘end of life‘ at me. I’ve only just come to terms with the words ‘life-limiting and life-threatening‘ The words that made my legs crumble beneath me when I heard that and Dylan in one sentence. 

Now, those who follow my blogs may have noticed I’ve been a bit quiet of late. Sometimes words just flow. Other times I’m just like Dylan ‘non-verbal’ I apologise for my distance. 
Firstly I would like to wish you all a very happy & healthy New Year. 

Like every New Year, I think ‘this’ll be our year’ However, (& I really don’t like to talk too soon) we have started each year, 2011 through to 2016 with a poorly little boy (thanks time-hop & Facebook memories for not letting me forget!

Now 2017 (albeit we are only 17 days in) is proving to be a positive one. The most positive by far. For our gorgeous little boy Dylan is doing well, very well in fact. Our generally sick little boy is suddenly full of laughter and giggles, cuddles & naughtiness. He’s happy, fun-loving, cheeky, newly inquisitive, incredibly messy and extremely funny. Oh, and when he wiggles his toes in ‘if you’re happy and you know it‘ I could just eat him up. 


Back to the ‘P‘ word. 

When an appointment came through to see a paediatric consultant from the Palliative care team at GOSH I felt physically sick. This isn’t a general paediatric appointment. Not just anyone can see this type of doctor. 
Now, when he’s doing so well as well. The stigma of the ‘P’ word was making my eyes sting. 


Stigma. I’ve experienced many of these in the six and a half years I’ve been Dylan’s mummy. A couple of years ago when we were referred to a children’s hospice I had the same feeling. 
Children’s Hospice; A nice place for child and family. Nothing else. 

When I googled the ‘P‘ word the definition was far from what I was imaging. In fact what defines the word described exactly what Dylan requires. 


Palliative; To alleviate pain without dealing with the cause of the problem. This I can deal with. This is what Dylan requires. A doctor who specialises in pain management and can tweak Dylan’s pain relief in order to help him. Especially when the worlds renowned stongest drug rarely works. 

The ‘P’ word. A word I am now not scared of. 

The only ‘P‘word I will be using for 2017 is……… Positivity 


Lucky Star 🌟⭐️🌟

It’s has just hit me as to why I haven’t been able to blog as frequently of late. 
  

Yesterday on Dolphin Ward whilst seeing Dylan’s paediatrician and discussing Dylan’s ongoing infectious diseases (throat and oesophageal tract infections) it occurred to me that we have no pending procedures under general anaesthetic due any time soon. Normally I’d get told that they’d look down his tubes whilst under GA but seen as Dylan has had almost every intrusive and inquisitive investigations in his almost six year little life there’s practically nothing else that can investigate into at present. 
So he needs his tubes looked into, also needs a dental examination both under GA but neither want to be done as a sole procedure. His knee will need operating on approximately at 7 years old we were told, but seen as Dylan’s legs are the length of a 9 month old baby that’s not gonna happen anytime soon  

  
So I should be able to take a breath and relax surely??? 

  
It approximately works out that’s he’s been put under for something or another at least once every two months of his existence. Wow. That’s a lot of sleep this child’s had (hehehe!!) 

So what I think I’m getting at is that it’s now boring…… Is that a correct thing to say?? 

 
We’re back to regular routine consultant appointments….

  • Rheumatology – happy that his inflammation is under control with both his daily steroids and his cytotoxic injections. 
  • Orthopaedic– can’t operate until he’s older
  • Endocrine – can’t help him grow 
  • Neurology – is flummoxed with the abnormalities they found on his scan last year 
  • Genetics – starting him on the 100k genome project in May 
  • Immunology – I’m giving him his regular infusions, but my boys IG levels are still dropping whilst on the drugs
  • Cardiology – regular reviews 
  • Gastro – at a stand still, although his reflux is back with a vengeance 
  • Respiratory– under review 
  • Optometrists– he WILL not wear his glasses
  • Dental – under review 
  • Along with 2 dozen therapists, community teams and local teams (all that’s missing is a partridge in a pear tree!!!) 

  

Is it boring that we have no ops pending?? Surely not. NO! This is my time to enjoy my little boy. Dylan ‘Peter Pan’ M. 

  

So I should count myself really really lucky, 

  • The Past – we’ve been through really tough times, touch and go at times 
  • The Future – we’ve got tougher times ahead I know 
  • The Present – we have a happy amazing little boy who simply put, is my baby, he doesn’t sit still, he’s constantly on the go 24/7, he’s obsessed with his car tights and Adidas hoody, he handles pain amazingly, he takes everything that’s thrown at him in his stride, he’s never angry. As long as he’s got his Birdseye Potato Waffles or Mcdonalds chips along with his orange flavoured Fruit Shoot and shock horror a brand new addition to his food regime Teeth and Lip sweeties he’s happy as Larry (who is this Larry??) 

In Dylan’s world it’s a happy place. I’d happily swap places and live in Dylan’s world. It seems a lot nicer place than Mummy’s world. He’s a lot happier there than I am in my world. 
I am so Lucky as I have Dylan 24/7. We do everything together. He is my world and he makes my world perfect. 
So for now I’m going to be thankful of the time we have away from being an in-patient (which has turned into being the norm for us), and enjoy every second of normal life, well normal-ish!?!?

Dylan’s my bowl of #luckycharms 💙💙

 

(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!”

          

        It’s beginning to look a lot like Christmas 🎅🏻🎄🎅🏻🎄

        Being blessed with a Special Needs child is not on the top of everyone’s wish list, but when life gives you no options it’s sink or swim. I am paddling for my life right now and in return I see my little boys smiley face and it makes me paddle harder.

            

        Today I met a mum who touched my heart 

          

        For the first time since the words ‘life’ and ‘limiting’ entered our vocabulary we mixed in a social group of others on a similar journey to us. 

        For today was the children’s Christmas party at Haven House. Rich had to work so I took the children alone. Dylan had a ball, he loved the panto – ‘Naughty and Nice list’ and I loved that he sat on my lap for the duration and I used his hands to wave, clap and join in with all the actions. 

          

        Being a Special Needs mummy takes guts. You need to be fearless. It can be a quite lonely place. You need to be a medical journal, a nurse, P.A, voice and mind plus all the usual jobs of a mummy and more. 

        When you decide and if you are lucky enough to have children, an unconditional love like no other, warms your heart and takes over your heart too. But to become a legal guardian of somebody else’s Special Needs child take a strong and courageous woman and that’s who I met today. A lady I instantly felt a bond with, we only chatted for a short time whilst in the queue to see Father Christmas but the love she had for her foster daughter filled my heart with joy and pride. For this lady had the choice to take all of the above along with her regular mummy duties bringing up her own two children and appeared to do it with such strength and grace. She has the most beautiful little girl whom I hope to see again at Haven House one day. 

          
        Which brings me onto what being a Special Needs mummy is all about….. 

        As 2015 is drawing to a close, a year which started off with an incredibly poorly Dylan, a fairly good middle and one which is ending with another prolonged chest infection. Here’s my list which sums up yet another challenging year. 

          

        1. You feel like you are living in a surreptitious world; you will witness ignorance and incomprehension, you will witness miracles that no others see as a miracle, and you will treasure every single moment. 

          

        2. You are dealing with a real life situation far beyond any expectations, and you just deal with it. 

        3. If you’re lucky, you will have met parents that walk the same path as you
        . You will march alongside together, although your roads take different turns and have different bumps along the way, you can take comfort in the similarities. 

          

        4. This year I have learnt to admit how hard it is, I don’t have to be a cheerleader, upbeat and positive all the time. It does hurt. It is tough and sometimes I feel deflated. But OMG it can be so rewarding when he does the smallest of things and that’s the best pick me up any mummy can get. 

          

        5. You are allowed and can say ‘No‘ to doctors and it’s ok to know more than them!

        6. It’s ok to let your child set the pace

        7. Don’t let anyone tell you you’re not allowed to grieve for your son’s childhood he is not able to live. ‘Sliding doors’ is my interpretation for it. Try not to think too deeply, just enjoy the journey your child is on. After all he writes the chapters in his own story, and he only sends Special children to those he knows will cope best
          

        8. It’s a lot harder than I might make it look being a special needs mummy, 24 hours a day 7 days a week, week in and week out. I might put on a smile and some lippy but it’s right there from the minute I open my eyes to the minute I close them and not forgetting the time in-between. 

        9. Pencil it in has never been a truer saying. For no plans can ever be a permanent fixture as chances are that I will need to rearrange. To all my lovely friends whom I have cancelled on numerous occasions this year I appreciate your understanding and constant support. 

        10. Being a special needs mummy can be a very lonely job. Sitting awake during the long cold nights with your son, waiting in hospital waiting rooms, endless meetings for one thing or another, of late ECHP. For us living with the unknown itself is lonely. But when you are lucky enough to have the most wonderful true friends who are always there, bend over backwards to help and just put a smile on your face you know you’re not alone. Old friends and new, ladies you know who you are and I couldn’t get through each day without you.  

          

        My amazing family, parents, in-laws, siblings. My wonderful, intelligent, caring and beautiful daughter Scarlett and lastly my rock my husband Richard. Thank you I love you all. 

          

        Last but by no means least, the reason I get up each morning, the reason I am the person I am today, my inspiration, my love, my life. Dylan xxxxx

          

        Wishing you all a fabulous Christmas, a Happy New Year and to a hopeful, successful and healthy 2016. It’s Dylan’s story and he writes the chapters.

        Love Dylan’s Mummy 😘 

          

        Bows 🎀 Presents 🛍 and a Wheelchair ♿️

        The lead up to Christmas, my favourite time of year. But like every year I wonder what Dylan will make of it. Last year, his fifth Christmas
        he recognised Christmas trees and pointed to the lights, this year, Christmas number 6 I am hoping Dylan will get a little pleasure from the festive period.

        I love this festive time of year, the build up to Christmas is the most exciting. I love being a Christmas Fairy and spending all my money on my children, husband and loved ones ensuring they all have the most fabulous gifts (note to hubby…. I still love receiving gifts too – mostly of the designer handbag sort lol!!)

        Dylan’s always the most difficult to buy for, as he is not age appropriate and his level of development plateau’s. This year I have found some beauty’s for my little prince! Can’t wait to give him them

        Those of you that know me know I love to, in my spare time, which there’s not much of in my world,  make beautiful handmade hair bows. I enjoy doing two Christmas fetes each year locally.

        This year, as we are in the process of starting Dylan’s Story Charity (not a registered Charity yet) I will be putting all my sales towards Dylan’s new wheelchair accessories, which we went for fittings for today. So if you buy a bow from my stall you’ll know you are helping a great cause

        Which leads me on to…….

        Every single hurdle is tough and not one is in the ‘mummy hand guide’ But of my hardest yet, which even though I have been expecting it for years, acceptance is tough. Today was Dylan’s wheelchair assessment…..                                                             You see my five year old baby fits so snug in his McLaren stroller I’ve wanted to keep him in it. He’s happy in it. It’s lightweight, & great for doing Christmas shopping with!!

        However, Dylan, who is already Hemevertibrae T6-9 (slightly curved spine) is leaning to the left putting a strain on his spine and pelvis meaning he could fix in this position. Now we don’t want that, so my broken heart aside, we tested the wheelchairs. We have decided to go with a ‘special buggy’ wheelchair. It’s bulky, it’s heavy, it’s ugly and horrible and if I am honest I totally hate it but Dylan took to it like a duck to water, or a SWAN in our case.


        Although he refused to smile for the pics, he did really like it.


        It should be delivered after Christmas so time for me to mentally prepare myself to push a ‘wheelchair’ around. Sell lots of bows to help fund it. But like with everything else that’s been chucked at me I will learn to love it and deal with it just fine. After all my beautiful boy will be in it

        To sum up how I’m feeling knowing my Dylan’s going from a buggy to a wheelchair is heartbreaking, admitting the truth hurts, life stinks sometimes……


        Then I look at my gorgeous happy little boy and absolutely nothing else matters but his health and wellbeing.

        Dylan mummy loves you more than you will ever ever know. 💙💙💙

        You are my sunshine ☀️


        Greetings from Sunny Spain……. The perfect weather when holidaying with an extremely complex child. It’s in the 70’s, a bit cloudy, a bit windy and a bit wet…. Perfect weather for Dylan!! Holidaying with a Special Needs child late October seems to be the way forward.

        Whilst most children live for going on family holidays it can be extremely stressful for a child with complex health issues, learning disabilities and very limited understanding to explain where you are going and what’s going to happen. Especially when the child is Dylan who loves being at home. The disruption of his routine, sights, smells and home environment is enough unsettle him for the entire time we are away.

        Like many, holidays are a chance for the whole family to spend quality time together. But for us, away from hospitals, doctors, endless appointments and most importantly it’s about ‘making memories’

        It can be hard keeping everyone happy. You see, Dylan has never before liked the heat, the water, has never experienced the sea, only eats certain foods and has sensory issues. So holidays for us have always been a challenge
        Preparing with pictures……….……. As part of Dylan’s Home Education we use a Photo-Book as a way of communicating. So in the lead up to our holiday we used this to prepare Dylan for what’s in store. A picture of an aeroplane in a blue sky to Dylan was thought to be a “ba” (translated; bath (blue water) a Swimming Pool again was a ‘ba’, not a bad understanding eh! The beach was recognisable to Dylan as a ‘ba’ (just the sea). You get the picture. As far as Dylan understood we were having a bath!!

        I tried explaining about the aeroplane to Dylan. “It’s like a big taxi in the sky“. It was hit or miss whether Dylan pointed to the sky with me when discussing it but the bit I know he understood was taxi.

        Dylan’s Grandpa is a London Black-Taxi Driver and Dylan has found a true love ❤️ for being chauffeured around in Grandpas taxi, he absolutely loves it and recognises them going past calling them a “nana” (as Dylan is catagorised as non-verbal he can’t say grandpa or taxi so it’s the next best thing to call it) Dylan squeals with laughter & giggles & then laughs some more. So you can imagine the pleasure it gives his Grandpa to drive him round after his hard day at work!

        So, so far we are having a bath in a taxi!!!

        But did Dylan know something was happening? I’m not so sure.

        So the general consensus is to plan ahead. Giving a special needs child a visual concept of what’s in store, preparing them what to expect – preparation is the key.

        Dylan loved the aeroplane. After long discussions with Ryan Air via our wonderful travel agents ‘Travel By Inspire’ who deserve a mention in my blog as Nikki, Michaela and Lyndsey couldn’t have done more for us in arranging our flights,  all that goes with travelling abroad with a sick child and taking the huge load from myself. Thank you.
        Another HUMUNGOUS THANK YOU  to Richards friend Barry for letting us stay in his amazing apartment. An extremely kind gesture for which we are so thankful for. As for Lloyd, we won’t mention the car hire company……haha!!

        So with a folder filled with medical notes & a suitcase filled to the brim with medication we were on our way, only to be delayed by a full on security check at Stanstead Airport checking every single bottle of suspension and nearly losing 2 iPads. So, with a hungry wingey child in tow, Scarlett, not Dylan! we were ready to fly.

        Special Assistance were fantastic at the Stanstead and we were greeted at Malaga Airport by a man with a wheelchair ready to escort Dylan.
        Dylan didn’t really understand the aeroplane but being a night flight we have him his sleeping meds which actually worked. Well at the time of descent it did!!!

        After tooing & frowing with the airline as to whether our “5 year old baby” should sit on his own chair or on my lap. We decided to sit Dylan on his own booster seat on the plane which he sat for the duration as good as gold – Familiarity is key.

        I think he thought we were in a taxi of sort?

        Dylan settled into the apartment extremely well, finding his way around and making himself at home. He’s had a couple of bad days feeling poorly but a dose of meds and a mummy cuddle & he’s picked himself up. He is such a strong boy. Not much gets our special boy down.

        He is having the time of his life playing with daddy. Dylan loves sitting on the side of the pool with daddy splashing his feet. The water’s cold but that doesn’t stop my gorgeous boys having fun and daddy got so much pleasure being part of Dylan’s first happy experience in a swimming pool.

        Another first experience was on the sand. Being that it’s not too hot, Dylan was able to sit on the sand with daddy and Scarlett, feel it between his fingers and toes and help them build a sandcastle. We were all a little bit confused when Dylan used the rake as a hairbrush – but that’s our boy!!! full of sand and giggles. If only I could bottle it, it’s a magical sound. #sensoryoverload #messy

        I’ve learnt on our long hard journey there are different types of people in this world but when you meet a genuinely nice person, especially when they find out about the health condition of your child, you will remember it for a long long time.

        The waitress who served us ‘Peggottys Fish n Chip’ restaurant offered to go, on her day off to ‘Iceland’ in Marbella to get Dylan Orange Fruitshoots. Thanks Jill, I know Dylan would have dehydrated without them.

        Also to Jacky who made such a fuss over our Dylan every time we dined there.

        Now we are nearing the end of our holiday, it’s like being in a bubble. Quality family time together as a four is rare with such hectic schedules, hospitals, schools, work….. so we cherish every second of our lovely family time together. Reality starts again when we are home; doctors appointments, Great Ormond Street Hospital, Therapists, Injections, Infusions and so on.
        But for now we are going to enjoy every second.

        #makingmemories

        Just a spoon full of sugar….. 

        Helps the medicine go down, in the most delightful way!! 

        With Dylan’s 5th birthday fast approaching I thought it’s time to gather my thoughts…… 
        Our little boy is hitting a milestone that not only feels like it’s taken over a million years to arrive but one that we are more grateful for than anyone would ever know. For our sick little boy is a true fighter, has defied almost all odds and still surprises us every single minute of the day. 

          
        Some of you know that recent news is our immune suppressed little boy’s immune system has worsened and he is due to start a new treatment at GOSH next week. Hoping it’s only a good thing as can and will prolong his life making the most difficult time – Winter, when germs are flying about much safer for Dylan and for him to be able to sail through (PG). But the downside it having to perform an IV treatment on a little boy how has literally no access (veins for drip), who currently has no central line, who urgently needs this intravenous drug. A drug made of human blood which will be required on a weekly basis. All very scary stuff with potentially scary side effects for us as parents to endure. My only saviour is that Dylan’s limited understanding means he has no idea what’s in store. What’s sadder is that after four previous birthdays Dylan has no understanding of what’s in store here either- all the good stuff, balloons, presents, cakes……. No. Idea. 

          

        Raising a child with special needs especially one who is undiagnosed is both a challenge and a blessing. Challenging as no one has ever seen nor treated another ‘Dylan’ and a blessing because you don’t know the depths of victory until you see your child achieve and overcome milestones that most other parents take for granted with healthy children and these are what take so much longer to achieve and are so much more challenging but he does it and in his own time. After all it’s ‘Dylan’s Story!’

          
        So with no immunity and no understanding the only choice is a family gathering at ours. Where Dylan is the happiest with his favourite people. Which leads me onto my emotions…… Whilst they are running high here are my top five factors about being a Special Needs Mom for the last five years. 

          
        1. It’s a very lonely place raising my son. You wouldn’t think so the amount of people I communicate with on a daily basis about Dylan, the GP, Community Nurses, Phlebotomists, Consultants, Clinical Nurse Specialists, Inpatient teams, Outpatient teams, Physiotherapists, Occupational Therapists, Speech & Language, Educational Specialists the list is honestly endless with probably near on 50 health care professionals, attending appointments, managing Dylan’s Diary! In a day I do a whole lot of talking, mostly about Dylan but it’s lonely parenting a special needs child. I feel like an outsider around mums of typical children. I feel out of place hearing (please refer to point 5 I am not bitter and not jealous it’s just something too difficult to properly explain) mums talk about their 2-year old with a vocabulary of 100 words, their 4-year old starting Reception and now their 5-year old going into year one. I’ve been there with my daughter and your milestones are humongous to you as they were with me for Scarlett but just not with Dylan. It’s great for you but it’s so not what my world looks like. But the sanity comes in the shape of Facebook being part of groups of other special needs mums (SWAN UK mostly, Syndrome Without A Name) with whom, it’s comforting to exchange stories on tube feeling, medication, pain, therapies and therapists, practically anything. Although not one of them has the same child, we are all in a very similar situation. We understand. But as I said, It’s often a very lonely place raising my son. 

         
        2. It’s a scary place. I worry about everything these days. I worry when I don’t have things to worry about which is obviously very seldom. I worry I’m doing right for Dylan. I worry I’m doing enough for Dylan. I worry if he sneezes. I worry if he coughs. I worry if he sleeps and I worry when he doesn’t. My first major worry was when Dylan was 8 weeks old and started having seizures, they thought they were epileptic so I worried if my 8 week old would drive and then when he was 5 months old and too poorly for the general anaesthetic he urgently required I worried if he’d pull through and so on. Now I worry for his future will he walk, will he talk, not the usual things like will he be a footballer or an accountant, will he travel to Australia, will be make me a nana??? I worry how long I have him for. It’s my worst fear. I also worry that something might happen to me and I can’t look after him. I’m scared of my own shadow these days.  See it’s a very scary place. 

          
        3. I am only human. Some call me a super mom, I joke and call myself Mary Poppins – practically perfect in every-way! and if I am also entertaining and cooking a 3-course meal a ‘Domestic Goddess!’ But I am only human and I don’t think I do anything more than anyone else would do given my situation. I have been challenged to my limits and even pushed beyond them raising my son. I have developed an inner strength that only someone who has found theirs would know. I have developed strength, determination and fight like no other. I have grown tremendously as a person and as a mum. But I am only human, I get the hump and can shout a lot and can get cross at the littlest of things. I want to run and hide in Selfridges and shop till I drop but I can’t, I can’t run and hide anywhere. I have dreams, all of which include Dylan doing ‘typical’ things like walking and talking. Sometimes I want to run away, but my escapism is watching trash TV and Internet shopping. Then I look into my sons eye, listen to him mutter and feel a love literally like no other and the only place I want to run is to pick him up and squeeze him. I am only human after all. 

          

        4. I am tired, no I’m not I’m exhausted. Drained mentally, emotionally and physically. Being a parent is a selfless job, 24/7, unconditionally. It’s simply exhausting. But when you have the extra care of bringing up a child with extra needs, special needs, it takes fatigue to another level. It’s not just the lack of sleep for five years I’ve experienced, it’s the worry, the what if’s, the why’s, the how’s, the everything’s. The paperwork, the arranging appointments, giving medication and injections at precise times of the day, correct days of the week, recognising his cry and referring it to a particular pain, keeping him well, keeping him safe , keeping him alive. Through sheer love and determination is why Dylan is where he is today, all through eyes held open with matchsticks. Now I am luckier than a lot having a hugely wonderful supporting family and a handful of amazing friends who truly understand, offering help but I am probably too independent and rarely take it. We are also lucky enough to be part of Haven House Children’s Hospice but I am just not ready to accept respite and to add to my Mary Poppins CV from September I will be home educating Dylan (OMG) I simply love spending every waking moment (and there are a lot of waking moments!!) with my amazing little boy. He makes me laugh, he makes me cry but mostly he makes me proud. But in a tired kinda way 

          

         

        5. Green Eyed Monster I am not! Please don’t get me wrong I am NOT the green eyed monster, I am certainly not bitter and twisted when I see pictures of your little darlings on Facebook taking their first steps, telling you they love you and enjoying their first days at school I am truly happy for you  But when I see a 1-year old baby doing what my 5-year old can’t do I can’t help feeling a pang of jealousy. It hurts when I see my son struggling with things that come so naturally to healthy children. I know in Dylan’s World he is happy crawling round the floor playing with his sensory and baby style toys in his 12-18 month old clothes and I am SO SO lucky to have been blessed with this adorable child. I just want to keep him. Forever. I am not jealous of you!! 

          

        I am Dylan’s mummy, his carer, his nurse, his P.A., his taxi driver, I clean up after him and now his teacher and I wouldn’t change a thing. 

          

        So please join me on Thursday, raising a glass (of Orange Fruitshoot if you wish) to my little Miracle Dylan who is hitting a huge milestone. His fifth birthday. One I’ve worried we may not have seen. Here’s to the next one and the next one and the next one & so on…….(PG). Be healthy my lovely little boy. Mummy adores you. 

          

        But for now mines a prosecco! Cheers x

        💙💙💙💙💙💙💙💙💙💖💙💙💙💙💙💙