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

You are enough #rarediseaseday2018

We are consciously trying to prove ourselves,

To show we are enough.

Filling the internet with memes of positivity,

Expressing the needs for some self love.

We are encouraging each other to be one off's,

To embrace our unique ways,

Whether that be a love of dungarees and unicorns,

We're individuals... the memes say.

But here's the thing that does not sit right,

In this doubting tummy of mine,

They seem a little hypercritical,

Maybe my hope has worn with time.

We have lived 'unique' for 10 years now,

And in honesty for most of it,

Professionals, educators and myself,

Have spent that time trying to make him fit.

To fit him into the curriculum,

To fit him in with fellow peers,

To fit him into a certain box,

Hoping extra support will appear.

Trying to squeeze him into peg holes,

Trying to label him some more,

Trying to push ourselves even harder,

When we were already broken on the floor.

Diagnosis took until he was 4,

A genetic disease that effected his brain.

Then we found his gene fault 4 years on,

The chink in his chromosome chain.

More medicines and more Dr's,

Quickly rolled in with the tide,

As this family of three stumbled on,

With Joubert syndrome by our side.

He is rare, and individual,

He is all he has ever been,

But all his life, for right or wrong,

He has never truly just been seen.

He is a list of symptoms in the eyes of some,

Or a page of learning goals never hit.

As grown ups we say 'we are enough',

Yet we show him you don't quite fit.

He can dance and sing and write you songs,

His physio taught him last month to hop.

He beats me now at video games,

He is the boy who never gives up.

He loves without question and dreams big dreams,

He admits he finds things tough,

But he gets up and smiles and hugs his dog for support,

The boy who never gives up.

For someone who is living with a 'wonky' brain,

He's the face of determination and pure grit.

And if people cannot see him just as he is,

Why would he ever want to fit?

#rarediseasesday2018 #joubertsyndrome #wecareforrare