A virus named Covid...

Once there was a virus,
They called him Covid-19.
He was not very friendly,
In fact he was rather mean.

He’d give you a high temperature,
Make you pretty sick,
But giving you a cough that hurt your lungs,
That was his party trick.

And he was very sneaky,
He liked to spread through touch or air,
A high 5, hug or by a sneeze,
He really did not care.

He was hurting all our loved ones,
So the world it said ‘no more’.
And bar a few important people,
We were told to stay indoors.

“Hello!” Covid tried,
As the boy went to the sink,
He’d accidentally sneezed into his hand...
But the boy had time to think.

And with lots of hot water,
With foaming soap a plenty,
He scrubbed and washed his hands all clean,
As he counted to 20.

Covid could not stick to him,
“Oh no!!!!” The Virus cried.
And carrying himself on the breeze,
He quickly snuck outside.

“This will be easy” Covid laughed,
Busy streets was what he expected.
“What??! People are too far apart,
“I’ve no chance of getting them infected.”

His plans they had been thwarted,
But wait at second glance,
Some people were still stood too close,
And Covid saw his chance.

He may not be spreading as quickly now,
But he will always try his best,
Though by staying home and distancing,
We are putting him to the test!

And then in a few months time,
When he is weak and like a ghost,
Our amazing Superhero scientists,
Will be the ones to hurt him most.

The world will take a medicine,
That will stop him forever in his tracks.
Because no one likes a bully  -
And we just want our hugs back!

Santa came early - a tale in beating the odds

A beautiful boy with a gorgeous smile,
We loved beyond all measure,
Though the first milestones weren’t there...
Something we did not treasure.

People were quietly worried,
A warning flag was raised,
So the day after his christening,
We were told it’s just developmental delay.

We joined physio groups we made great friends,
But still his legs would not stay up.
The screams from using gaters on him,
Made tears that could fill a cup.

He did not walk, he did not talk,
Though finally he happily did sit.
And Mr Tumble and Makaton
Should never under estimate their bit
In easing his frustration
When we did not have a clue,
Would he, could he? We did not know.
Are hearts were being chewed.

Test after test, room after room,
But there was an elusive causey
As christmas week in 2010,
“It’s a type of cerebal pausy!”

And then we cried, oh how we cried,
Thinking we were done,
But genetics turned up after an MRI
And here began the fun...

They threw the diagnosis out,
Introduced a type of muscular dystrophy...
GOSH would help us understand
But as parents how could this be?

It turns out all were wrong,
Because hidden in the old MRI,
Was a shape no one had looked at
But could easily identify,
That he had a hidden genetic disease,
Rare and at the time hard to test.
And from then on at 4 years old,
We lived with the gift tag JS.

It effects fine and gross motor skills,
So balance and obviously walking.
It made heating yourself really tricky,
And of course hindered you when talking.

But this despite heavy broken hearts,
And tears that could fill an Olympic pool,
Truly after his ‘can do’ mindset,
Has really meant fuck all.

Because today my friends at 12 years old,
He did something we never thought we’d say...
This wobbly, rare amazing human...
Ran his first 5k!!!!

And all the tissues and physio,
wheelchairs, walkers and splints,
Mean nothing after seeing his eyes,
Holding a medal with awe and sparkly glint.

He achieved the near impossible,
And to run it by his side.
Fills my heart with hope and love,
And I am bursting with sheer motherly pride.

More unicorn, less potato...

Kettle bells and burpees,
Battle ropes and squats,
The beating heart of hiit work,
To the countdown of the clock.

Power jacks and slam balls,
Working strength and core,
Achieving 20 press ups,
Then knocking out 5 more.

Crunches, planks and deadlifts,
Wood chops side to side,
Finishing with a minute plank,
Before crumpling with pride.

Getting miles in those rusty legs,
Feet pounding local roads,
Silencing your own self doubt,
As your distance starts to grow.

Then week by week you see a change,
And not just physically,
My head feels a lot less foggy,
I am more positive and more me.

I feel much less potato like,
As tiny abs and muscles grow,
Being powered on by unicorn dreams -
Hoping my feet one day chase a rainbow.

This is for me, they are my goals,
I will stay focussed, run and train.
I will not fail, I’ve got this.
Because its good to feel me again.

A little less potato and a little more me

It has been a long time since I typed.  I had wanted to but the words would not come.  It has been a 18 month journey of big changes for all of us, yet none of them seemed worthy of writing about when it came to sitting by a keyboard because although they should have been positive... I was struggling.

The house move was a huge deal and the joy of finding new space for our son to access has been amazing, but there was a pressure of maintaining a unsaid promise to the previous owners to keep things perfect in the garden, a role I took very seriously as they reminded me of lost loved ones. Inside the bungalow I was struggling to make a 1992 interior feel like our home, like my comfy small slipper house I had left behind. I know it is only paint and paper, but with the garden such a marker from the previous family I knew this was the way to make it ours but we never seemed to find time... I found this hard.  We lived here but I did not feel like we belonged.

There was also the school transfer to secondary, which has been the best choice for our son, but it came (as expected) with challenges which have taken time to iron out.  Looking back and if  I am honest with myself, despite knowing it was right, admitting openly that we needed a SEN placement took a long time to come to terms with despite the smiles and the ‘we are so lucky’ pleasantries I perfected.

Everything has just felt foggy... at as time when I should have been at my happiest.

It is hard to explain that you have been lost when you don’t realise it yourself, but those close to me have been super patient and generally wonderful over the past year as I have quietly unravelled, rolling me the other way to keep me as bundled up as possible.   I know it has not been easy for them and challenging at times (to say the least).

But there is a shift in the air, I can even pin point the moment things felt ready to change and I finally feel motivated again.  I feel ready to do things our way now and a lick of paint and not 1986 carpets has changed the home so much.  Our son continues to love it here and has the added magic of walkie talkies when we are up in the tunnel potting on, though I am not sure I am ready to be sung baby shark again for the hundredth time!

Being a grown up is long hours and no where near as fun as your teenage self assumed!  And parenting is hard.... whether you have 1,2,3 children, boys or girls, whether your tribe are developmentally textbook, have additional needs or need for other medical support.  It all is bloody hard....

Trying to find the balance and to not be so harsh on yourself when you have forgotten to buy that disco ticket because you were also busy doing the online shop, the dog needed a wee, you were asked to name the Liverpool football team and someone just shouted they need a loo roll, is a skill.  It is easy, despite exciting wonderful fun times, the days the sun shines and you know you should be grateful, to just get a bit lost in it all... the ‘not being able to get off’ ness of it all.  I think I was just treading water and time passed by and I had done a pretty crap job at looking after myself!

I know I worry too much, I try to plan too far ahead, with my sons needs you feel you have to be 3 steps ahead of where you are, but this takes is toll.  It’s exhausting.  His 12th birthday is around the corner and right now I have a young man who needs his mum to be at her best and his needs are now... worrying about college and beyond is not helping him this second, when his world revolves around fifa, pasta and wanting to watch the stars round a fire pit.

So this mum is back in the room, but possibly far more jacket potato shaped than she would like

and has collected extra chins like he collects football cards!  It is time to kick myself into action.... I shall be digging out that active wear and hoping a few years on and a few too many cooked breakfasts later I can get more than one boob in the vest top!  Very much looking forward to starting training with Green Apple fitness, setting some goals and getting some self confidence back.  It's nice to see things in colour again and to finally feel home. x

Worthy

I don't know how it happened,

The date or time I'm unsure,

But with every roll of sadness,

My flame died a little more.

I seem to laugh a lot less now,

I find it hard to write,

My thoughts often feel muggy,

I keep them inside, wound up tight.

It's a forever kind of tired,

Like an aching in your bones,

Every step can feel an effort,

Like your shoes are filled with stones.

Being grateful is exhausting,

Being sad just feels unjust,

Feeling robbed yet being thankful,

Feeling permanently crushed.

Learning to accept his complexities,

Putting on your Mum mask,

Feeling guilty for your unhappiness,

For a path he also did not ask.

Watching others celebrate joy,

One you will never understand,

From a wiggly healthy belly bump,

To toddler first steps holding hands.

Oh to take that journey on your own,

With no sideline medical crowd.

Feelings that make you feel ashamed,

They taste bitter when said aloud.

So I tuck them in my back pocket,

Fold them clean away,

Brush them like crumbs from a table mat,

These things I must never say.

Because what right do I have to feel like this?

To feel that I deserved more,

When grief and sorrow lie silently,

Behind every closed door.

We never compare happiness like this,

Yet with sadness we hold different rules,

It needs to be justified, you question yourself,

Will your heavy heart make me look like a fool?

But I cannot ignore it any longer,

I need to look grief in the face,

Let the tears flow to feel stronger once more...

Let my light take the darkness' place.

Happy birthday NHS

Dear NHS,

I type this on this your 70th birthday whilst my son is on his first residential with school. He is currently firing a bow and arrow, harnessed to something high or on a quad bike.  He is pushing his own limits with the safety of those who want to see him  grow and succeed by his side.  He is a living miracle... one you discovered.

You initially broke our hearts.  You never meant to... you just did what you do best to push and challenge until you know every corner is double checked and that is when you found it.  It took a long time and you made mistakes on the way, but you found our answer; our needle in a haystack.  

By the time you diagnosed him, we had a boy who had defied the odds.  His diagnosis which can often lead to children finding walking, talking and learning difficult was being challenged from the very day you rang with an answer.  See he was 4... a walker using, curly haired wonder with signing hands and wobbly words.  He was already pushing the boundaries and changing the rules without any of us knowing.

Thanks to you, your wonderful staff and your 'we can' attitude, unbeknown to the physios, OT's, Speech therapist, Peadiatricians and us as parents, together we had achieved far more than we could have ever imagined.  

From a difficult pregnancy, an unconventional birth and still today 11 years on you stand by our side.  You have helped him overcome so many of the obstacles his own body has thrown his way, giving him, ourselves and the many who love him a better understanding of just how tricky just being him is.

Like all of us you are perfectly imperfect - you are determined to give your best in a time where the need and cost outweigh the staff and the funds.  In honesty we should do more to support you.  We should not get drawn into the media stories of bed shortages and failures leaving us feeling let down and disgruntled. We choose to listen to the man in the studio yet ignore your voices when you try explaining that you know this and are putting in 60+  hours a week to try to make it better but you can give no more... you are often left unheard simply facing a TV reporters shoulder shrug as your concerns slide off the politicians teflon covered suit.  

We owe you more than that.

I hope, on this your birthday - you can see that you are loved beyond measure.  You have saved lives, kept families together and provided dignity in loss.  We, like you, strive for things to be better, and we all know there are ways you could be, but we are truly thankful to you.  We are proud of you.  We are grateful for you - and YES... we will fight for you.

Happy birthday NHS.

The elephant in the room

"Morning already?" thought Finn as he went to pull open his curtains.

But he sat up too quickly and fell forwards  "It' going to be a wobbly day" he said with a sigh as he started to get himself dressed, avoiding the buttons which were too hard - Mum would help with those later.

As he came downstairs Mum gave him a huge smile as she finished getting breakfast before sorting his medicines.

He sat and ate chatting about how he has dreamt of flying like a Superhero and that he was excited it was football at school today.

As Finn stood to take his bowl to the sink he fell sideways a little, they both laughed and decided it was probably a wheels day today seeing his legs seemed tired and with that Mum went outside to get the wheelchair ready.

Finn sighed again.  Sometimes he did find it hard knowing he was different.

And that's when Finn first noticed it.  It was no bigger than a cup but it was definitely there, hiding behind the piano.

"Mum" Finn shouted, "why is there an Elephant in the room?" 

"A what?"  said Mum thinking Finn was up to his usual cheeky tricks but peering from behind the piano she saw it - a small white elephant.

"Well I never." said Mum.

"What shall we do with it?" asked Finn.

"Just ignore it" said Mum "I am sure it will get bored and go away."  

And so they carried on as normal just as if the Elephant was never there.

The next morning Finn came downstairs he was a little tired, he had forgotten the physio was due at school the day before and he had worked very hard. He sneaked around the living room to see if the Elephant was still there.  He did not have to try hard to find it as it had gotten bigger!  The Elephant was now as large as his toy garage and not only was it bigger it had also painted itself yellow with red spots and was trying desperately hard to get his attention by playing electric guitar and zooming around on roller skates.

Finn smiled and laughed as he headed into the kitchen for breakfast.

"Have you seen the Elephant?" Finn said Mum "I think he wants us to watch him."

But Mum was still sure that the best way to get the Elephant to leave was to simply ignore it.

So they did.

Morning after morning, Mum and Finn tiptoed round the Elephant. They had become so good at ignoring it that they had not noticed that it was getting bigger and bigger and bigger.

And still the Elephant tried hard to get them to see him.

He tried juggling whilst standing on one foot and drinking tea.

Nothing.

He practised synchronised swimming without a pool whilst learning to yodel.

Not even a smile.

He tap danced in the kitchen sink whilst wearing a top hat and bow tie.

Nope.

He even bought a unicycle and rode round whilst dressed as a Pirate singing sea chantys.

Still nothing.

One day he even baked them a giant cake making so much mess Mum could not get into the kitchen as he had filled the room with bubbles from trying to do the dishes - but they still just ignored him.

One morning after a bad nights sleep Finn woke up feeling really fed up though he was unsure why he felt so funny.

He rubbed his eyes as usual and went to head downstairs when he bumped into Mum on the landing. "That's odd" he thought, "usually by now Mum was getting breakfast" but instead Mum was stood looking down the stairs mouth as wide as a Bear Cave! 

"What's the matter?" asked Finn.  

Mum pointed, and as Finn looked down the stairs he gasped.  He was not greeted by the usual view into the living room, oh on... instead all he could see was a rather ginormous trunk which was trying to spin plates whilst the Elephant wore a fake mostache and bowler hat.

They had ignored the Elephant for so long he was now as BIG AS THE HOUSE!!!

Mum and Finn were stuck!

Finn squeezed Mums hand and stepped forwards, somehow he knew what to do.  It was something they should have done a long time ago.

He took a deep breath and bravely stepped forwards... put out his hand ... and stroked the Elephants head.

The Elephant slowly lowered his trunk, trying hard not to drop the plate on Finns head.

His eyes twinkled.

"Just ask" he whispered to Finn, smiling in that knowing way Elephants do, before adjusting the monocle he had added to his outfit.

Finn looked puzzled for a minute.  "Ask what?"  he said.

"The thing you need to, the question that won't go away no matter how hard you try to ignore it."

Finn hugged tightly onto the Elephant in the room, thinking hard about the question he had always wondered but never thought he should ask.

With a wise nod of the Elephants head, he lifted his trunk, wrapped it round Finn and lifted him back to the top of the stairs.  He placed him down gently beside his Mum and that's when Finn bravely asked...

"Mum, I wonder sometimes why am I different?"

Then just like that the Elephant was gone.

No long good bye, no puff of smoke or glitter dust... just gone, all bar the monocle which rolled down the stairs.

Then that morning over breakfast Finn and Mum talked about being different.  They talked about his wheelchair and about the people who help him.  They talked about why being different is not a bad thing - that it just is.  

They talked about how some people are tall and some are short, that some have curly hair whilst other peoples hair is straight.  They spoke of how some people have sisters and brothers and some don't.  They talked about how some people run and walk whilst others need help from wheels and walkers.  They spoke about how some people talk with their voice whilst others use their hands or computers.  They talked about how everyone was different, that nobody was the same... that being different was fantastic!

Finn gave Mum a HUGE hug and one of his best cheeky smiles as he held tightly to the monocle he had picked up.

Mum smiled back, knelt down and put her hands on his shoulders  "You must never be scared to ask questions Finn." she said as she kissed his forehead.

And do you know what - from that moment on there was never an Elephant in the room again.

COPYWRITE - KATIE KITCHEN 12/05/2014