Thats what friends (&family) are for 👭👭👭👭 

Slow down people would tell me,  take a break they’d say……


So we booked a fabulous family holiday to Marbella we were so looking forward to some well earned and precious family time in the sunshine, by the sea, on the sand, laughing & joking……. After the sudden health deterioration Dylan had suffered of late. 

Surely this was the break people were suggesting and the one we were anticipating?? 

But 48 hours prior to our flight I got a break. 

Six breaks in fact. 

In my fibula, tibia, bloody smhmiba!!!!! 

Not the break we had planned. 


Anyone that knows me knows I do not do a job by half….. So even down to breaking my leg I made sure was done good and proper. 

A huge fear of mine is breaking a bone. For I am the main carer of our almost six year old little boy, this little boy whose needs are that of a baby (& some). Our little boy whose life is so precious as well as being limited and far too medically complex for doctors to fix! 

So last Friday on way to do our last bits in prep for Marbs, Dylan and I took an almighty tumble down the stairs, whilst protecting him with my life, even the baby stair-gate didn’t stop our fall as we crashed straight through it bringing it off the wall and to the floor with Dylan and I. 


I heard the crumble and crack in my leg and the thump as we hit the ground. The pain was immense and we were both crying. Initially I was so happy I could hear Dylan’s cry as I knew he was alive. Then I was hysterical that I couldn’t move my body to get to him. I dragged myself to the front door to open in hope someone would hear and come to our rescue. 
Alone in this position with a non verbal child; what the hell was I to do??? Now the clue in actually in the title ‘mobile phone‘ and this, thank the Lord I had to hand. 


After calling hubby and mummy screaming for help everyone headed to our rescue hubby flew down the motorway, my parents, my in-laws and my gorg friend Sonia along with the nee-nor of a blue flashing ambulance filled with 3 very patient & kind paramedics. 


Sonia was first through the door who joined in with our crying, I needed her to check Dylan was unharmed as now I was flat out on floor in the most immense pain I’ve ever felt. Dylan was fine. I honesty do not know how, but once fed potato waffles and an orange Fruit Shoot he soon calmed down. 


Long story short; the NHS were superb, the operation went smoothly albeit I was awake for the whole two hour long surgery but am now on the long road to recovery. 

So instead of laying on a sun bed in Marbs i ended laying on a bed somewhere just as hot but not as glam – PAH hospital in Harlow!


So, I now I am a temporarily disabled person caring for my disabled son, and am the not-so-proud owner of lots of mobility aids including a wheelchair and a Zimmer frame. 
Having your independence taken away from under your feet (excuse the pun) is horrid. 


But I am truly thankful and touched by all the love and support I have received. My amazing supportive caring and loving husband, I am so so lucky to have my wonderful parents and in-laws who have all gone above and beyond the call of duty looking after me and my babies and of course my fabulous friends – ‘The Dylanettes‘ who have been put on a rota basis for caring for us, making endless cups of tea and being my personal hairdressers.  

So the break I’ve had this year wasn’t the one I had in mind…………… 

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!”

  

⭐️⭐️⭐️ (You’re Amazing) JUST THE WAY YOU ARE ⭐️⭐️⭐️

  
 
WATCHING MICKEY MOUSE ALL DAY LONG

OMG HOW MUCH I HATE THE THEME SONG

AND THATS DYLAN

  
 

HE DRIVES ME UP THE WALLS

HE ALWAYS PLAYS WITH BALLS

AND THATS DYLAN
  

HE ALWAYS WANTS HIS OWN WAY

BUT THATS WHAT WE OBEY

AND THATS DYLAN 

  
 
HE PUTS THE COINS IN HIS TOY PIG

HES ALMOST 5 BUT HE’S NOT THAT BIG

AND THATS DYLAN
    
HE LOVES PLAYING ON ‘MY’ TRAMPOLINE 

I TELL HIM NO AND THEN I FEEL MEAN

AND THATS DYLAN 
  

I LIKE TO HELP MUMMY GIVE HIM A BATH

WE SPLASH THE BUBBLES AND MAKE HIM LAUGH

AND THATS DYLAN 
  

HES JUST LEARNT TO CLAP I THINK ITS GREAT 

DYLAN REALLY IS MY BEST MATE

AND THATS DYLAN 

  

HES A LITTLE CHATTERBOX ALTHOUGH HE CANT SPEAK 

WE PLAY GAMES TOGETHER LIKE HIDE AND SEEK

AND THATS DYLAN 

  

 
ALL HE EATS IS CHIPS AND WAFFLE POTATOES 

BUT HE SOMETIMES STEALS MY HARRIBOS

AND THATS DYLAN 

  

DYLAN IS DIFFERENT TO ANYONE I KNOW

ONE OF THE MAIN REASONS IS BECAUSE HE DOESNT GROW

AND THATS DYLAN
  

DYLAN IS A FIGHTER HE IS SO TOUGH

HE SEES TOO MANY DOCTORS I THINK 1 IS ENOUGH

AND THATS DYLAN

  
HE IS A SWAN A SYNDROME WITHOUT A NAME

BUT TO ME DYLAN IS JUST THE SAME

AND THATS DYLAN

  
I THINK DYLAN IS AMAZING WHAT HE HAS TO GO THROUGH

BUT SADLY WE ALL HAVE TO TOO

AND THATS DYLAN 
 

  
I LOVE HIM THE WAY HE IS

FROM HIS BIG SIS !!

Dylan’s Poem

💙At the 20 week scan and right for the start
They noticed something was different about your heart
They also told me you were a boy, I was happy & sad
I wanted to know the future about my little lad💙

💙At 27 weeks you’d stopped growing on ‘the line’
At this crucial time I needed to know you’d be fine
At 36 1/2 weeks you arrived in this land
So perfect, so gorgeous, tiny toes, tiny hands💙

💙You didn’t eat much, an ounce or max two
We thought this was normal for our little boy blue
Then came the reflux, though we were unaware
The pain it could cause, the upset and the scare💙

💙From that day till this it’s affected your sleep
Not one full night to date but in hope we keep
At 8 weeks to the day, I remember it well
These episodes started, something was wrong I could tell💙

💙We rushed you to A&E, thinking the worst & unsure
They prodded you with needles, tests and loads more
After 6 days in Harlow when no more could be done
Blue flashing lights to Cambridge alone was not fun💙

💙Neurologist and consultants all got together
These brain scans seemed to go on forever
These tests inconclusive no results were found
So we were sent home still deafened by the beeping sounds💙

💙Dylan’s 1st christmas, his screaming  truly not pleasant or fun
For he was in pain, unknown to us what could be done
On January 17th our lives changed, let me tell you
For Dylan stopped breathing, he was still, stiff and blue💙

💙I was with my dad, we screamed and cried
So worried that my beautiful baby boy had died
The ambulance came as quick as a shot
They took him to ressus and laid him in a cot💙

💙I remember the look on my husbands face
As they put Dylan on monitors and listened to his trace
But one again tests inconclusive no results to be had
He was smiling and happy my little lad💙

💙Next came the problem of Dylan’s poor knee
Swollen and hot and not working properly
So on the 5th of feb to hospital we go
Thinking nothing really of it but little did we know 💙

💙The longest 24 hours in either of our lives
When they said the word GOSH felt like id been cut with a knife
More blue flashing lights through London at night
What was happening to my baby, this was such a fright💙

💙We arrive at 4am, the hospital was ghostly
I was numb I was cold but scared I was mostly
The walk to the ward felt like it went on for forever
The doctors arrived they all looked so clever
They said they would prep him for theatre soon
I looked outside I could see the moon💙

💙But wait another doctor decided they were wrong
No need to operate, I could break out in song
As I sit and put this down in black and white
I feel the exact pain I felt on that night💙

💙Before we knew it we were transferred to Sky
A pleasant ward, the doctor a really nice guy
We soon found out No one knew what was the cure
For our baby boy who is so innocent and pure💙

💙So they pulled him around like a piece of meat
Hoping that one day he would be able to stand on his feet
The crash team were called more times than I can recall
The drips and the drains, I could hardly stand tall💙

💙The moment I remember that haunts me to date
He was too ill for theatre, my heart broke for my little mate
The thing about Dylan is, for life his complete fight
He is the strongest boy I know, he uses all of his might💙

💙Fast forward 3 years, and just look at him now
So cheeky, so naughty and determined just WOW!
But daily life isn’t easy, it’s a struggle
Meds, injections, Physio, sometimes we want to hide and snuggle💙

💙But strong we stand together to get through each day
We don’t let the constant appointments stand in our way
It’s harder than most, but rewarding much more
Just watching our little boy crawl across the floor💙

💙Defying these doctors in every way
Please g-d Dylan you will walk one day
We’d love you to talk too, one step at a time
I am so lucky, Dylan you are mine💙

💙So at 3 and a half still undiagnosed
Why he’s got what he’s got no body knows
He’s one in a billion that we know for sure
But sometimes I wish there was just one more💙

💙An answer could come from two of the same
He’s on loads of studies, it’s just a waiting game
With no answers what will the future bring
In my heart I know it won’t change a thing💙

💙We joined SWAN, syndromes without a name
To know you’re not alone, although such a shame
That other children are poorly as well
But being part of a support group is really quite swell💙

💙Dylan is Dylan and we love him to bits
Even with all his ailments, meds, therapists and fits
In our eyes he is perfect, special and true
Dylan Jake Myers this ones for you 💙