It's about you words - not just his needs.

I get it.

I understand. 

Teaching my child is not easy.   I know it takes extra planning and time and dedication - and I am thankful you do your very best.  However the one thing I ask is that no matter how challenging you find him, please remember as parents we feel too.  So when stating difficulty you need to apply a little empathy, compassion and tact not solely fact, after all you are never telling us something we do not know... just something we may need to refocus on.

This is not a life I chose it is a life I fell into.  Remember that.   It is not a path I wished for and it is an unfamiliar life I am living.  I am tired, and weary and my heart is battle scarred.   I am as aware as you that the system does not fit my child, but I am also aware we are not in a position to change anything.  

When we sit and argue with county and professionals about a name on paper sometimes it is easy to forget that that child belongs to actual people, that this name on the paper has parents who love them and are only sat by your side fighting in solidarity through love and a drive to ensure we offer them the best opportunities we can.

I am not just a DLA filler, or medicine chaser.  I am not just a PA to attend meetings, arrange Drs appts and balance school attendance.  I am not just someone who gave up work to balance this life better, giving up the only sense of self I had left.   I am so much more than the shadow you see in a meeting focused only on doing what is right for my child.

 I am a grade 8 sax player and was the first person in my school to get a A* in music GCSE. I love to write and wish to be a children's author.  I was a dancer and medal winner.  I read a lot, I miss learning though am glad I never joined the RAF as planned,  though a career as a bands man would have been amazing!  I am a person too not just an advocate.

All I am trying to say is when you need to share concerns most of the time in honesty,  we already know and  it's not about what you need to say but how you chose to say it.  How you tell us matters, it truly truly matters.  In one breath you can either rally us on side or make us feel alienated and a bit of thoughtfulness and compassion really does go a long way in getting the best for everyone - parents, carers, teachers and pupils.

Chosen

Please don't tell me I am chosen,
Or that someone has a plan.
Don't remind me to ignore the can'ts,
And to focus on the can's.

Don't force me to be thankful,
Or to not look too far ahead.
To be grateful and simply humble,
Those are things not to be said.

Do not sweep aside my broken heart,
By clicking on a 'like'
Or roll your eyes as I falter again,
When my motivation goes on strike.

Because I am so very very tired now,
Of having to fight the fight.
To plaster on that smile,
Pretend everything's alright.

I have felt so much in 10 short years,
My heart's heavy, aged and cold,
It's hard to love when you are bitter,
When your insides feel so old.

There's no great plan, there is no path,
Just wonky fucked up genes,
One faulty DNA chain ripped up the rules
And scorched my every dream.

I simply made the wrong type of X man,
But a mutant all the same.
With no comic book style super power,
Just an NHS funding drain.

And you get battered over and over,
Like a sapling in a storm,
You bend and change but somehow stand,
Dishevveled and a little worn.

Your heart never really truly mends,
Just carries it's hidden scars,
As you fight your inner demons,
To accept things as they are.

But sometimes you can't do that,
There comes a point when you just say,
"I don't know if I have it in me,
To fight another day."

And you send out your cry for help,
Whilst trying not to drown in your own sorrow.
Hanging on with bleeding finger nails,
Hoping you will be better tomorrow.

That's when I need you to hold me up,
To let me softly sob.
Or to let out that big mum bear howl,
And admit how I feel robbed.

I am love and hope and strength abound,
For that it is my core.
It's just sometimes I need a lifeboat tow,
To drag me back to shore.

Finding the words

For weeks I could not find the words,

They taunted me lost in air,

It seemed impossible to grasp the right ones,

Knowing that you were not there.

I worried my pen would let you down,

Would my words still make you proud?

Without catching a glimpse of you green turtle neck,

As you smile within the crowd.

No more picking out your glasses,

Reflecting against the bright stage lights,

Seeing the shine of your perfectly curled hair,

Knowing you were watching on opening night.

We could only ever do our best in your eyes,

You took joy in everything we loved.

Now I must try to lift my pen once more,

As we send you to God above.

Sadness seems to rolls in like the evening fog,

Pulls with the ebb and the flow of the sea.

Yet it also is the key to unlocking our hearts,

Our memories allowed to fly free...

I'd like the phone to ring just one more time,

The postman to deliver one letter more.

To hear the echo of a 'whoo - hoo'

As we enter through your door.

To dance whilst you played the piano,

As Granph's voice bellowed from his chair,

To wake to sweets when we stayed the night,

To see curlers in your hair.

To go blackberry picking with the whole street,

To sit in wonder of your button jar.

Days out at the seaside,

Rainbow chasing in the car.

The way we laughed when you took a photo,

Leaning back instead of moving,

The huge ice cubes given to us in summer as treats,

Were always very soothing.

The creation of Milky Ribena,

Your  banana swiss roll trifle thing,

The Lucozade when were ill,

The excitement Christmases  would bring.

And the tears they turn to laughter,

Stories given life once more.

Seeing things with different eyes,

To the ones you had when you were small.

I know from you whatever my role,

Daughter, sister, wife or mother,
The key to contentment and happiness...

Is to 'always look after each other.'

This brooch was a lovely commision created by Madebylolly

Hopeful Treasures

In you I see hope.

A well of positivity, a drive to make things better.  Not perfect... simply better.

I see someone who just wants to be, someone who wants to walk these unknown steps with a smile in their heart and a spring in their heels.

I see someone who wants to still remember who they are - an infectious giggle and love of life.

The simple things.

Coffee and walnut cake.

Gin.

Bobble hats.

You give... again and again and again.  Throwing yourself into new challenges, that itch that won't budge, pushing yourself to be the change, to be the one who colours outside the lines altering the rules a little bit at a time.

In you I see my heart.

I see someone pen the words I cannot find, the heart aches I wish to forget as well as the joy I cannot fathom.

I see someone with a soul crystal clear that when it catches the light at the right angle it showers the people nearby with rainbows.

One blog comment triggered a friendship that has crossed borders and created adventures that have intertwined our families.

In you I see the treasure that comes from this life unexpected.

In you I see we are far from alone.

Thank you for taking Team Kitchen into your hearts.

Thank you for always being Ever Hopeful. x