The ‘P’ WordΒ 

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 πŸ’™πŸ’™

 

(Who) Run the World 🌍 ((Girls) SWAN Mummies) πŸ‘­πŸ‘­πŸ‘­πŸ‘­

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 πŸ’™πŸ’™πŸ’—. 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 πŸ€” 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 πŸ€—

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 β€οΈπŸ‘œ 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 β˜•οΈ, 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 Β£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 Β£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!)Β 

      
    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

        • Β£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 πŸŽ…πŸ»πŸŽ…πŸ»πŸŽ…πŸ»

        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 πŸŽ…πŸ»πŸŽ„πŸŽ…πŸ»πŸŽ„

        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 πŸŽ€ Presents πŸ› and a Wheelchair β™ΏοΈ

        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. πŸ’™πŸ’™πŸ’™