19/03/2025
😢 When will it be taken serious enough? What About Us? Spectrum of Light Rossendale CIC
Dedicated to Surrey County Council and the nameless faceless "panel" who make decisions on my child's future having never met her. I hope you read this. And Department for Education and Bridget Phillipson and Keir Starmer
Not really. It's dedicated to I Do Believe in Eleanor. The strongest girl I know:
How Much Must We Break - A Limerick
There once was a girl, stubborn and tough,
Whose life had been rocky enough.
Her future unclear,
Yet still, it was here,
Till fate said, “That’s not quite enough.”
A knock on the door, cold and slow,
A moment that shattered the flow.
Two strangers stood tight,
Their faces drained white,
With words no one wants to know.
“Your child has been hit—it’s severe.”
The world blurred, yet everything clear.
There was no time to pray,
As the world fell away,
And ten words she’d never unhear.
The crossing, the glass, the night air,
Eleanor—silent, just there.
The driver waved cars,
While strangers stood far,
And shock left her frozen, aware.
She knelt, touched her face, said her name,
No stir, no response, no change.
Her breath pulling tight,
Her skin drained of light,
And everything shifted to strange.
Then sirens cut into the air,
Blue lights flashing everywhere.
The medics took lead,
The questions, the speed
“GCS 5, she’s barely in there.”
Into the night sky she flew,
On a KSS Air Ambulance and its crew.
She’d have thought it was fun,
A grand little run,
If only she’d known what I knew.
A squad car, a rush, flashing lights,
A race through the London night.
The driver sped on,
The road blurred and gone,
And time lost its grip on the fight.
The hospital doors slammed wide,
A surgeon—brisk, sharp, and tied.
“She’s critical—now.”
No comfort, no bow,
Just hours of waiting inside.
The PICU, lit with harsh light,
Machines keeping breath in the fight.
“She might not survive,”
Yet somehow alive,
But lost in a world locked up tight.
A ventilator hummed by her side,
For weeks as her mother complied.
Two sedated in full,
No movement, no pull,
Just waiting—for what? Undenied.
Then doctors made plans in the night,
“She’s stable—she might win this fight.”
A new place, new care,
Yet trauma still there,
As hope flickered, fragile and slight.
Each milestone came wrapped in a fear,
“Will she talk? Will she walk? Will she hear?”
Would anything mend?
Was this still the end?
Or would some part of her reappear?
The months dragged on, slow and unkind,
As doctors kept shifting their mind.
“She’s making some gains!”
But nobody explains,
What’s lost in the wreckage behind.
Then just as discharge was near,
Came madness—raw, wild, severe.
She laughed at the walls,
Made inappropriate calls,
And lived in a world none could clear.
She saw things that weren’t even there,
Spoke memories plucked from thin air.
A festival with dragons,
A journey through wagons,
And people who’d vanished mid-stare.
She’d babble of places unknown,
Of parties she’d somehow outgrown.
Of castles, of seas,
Of riding trapeze,
Like history warped to her own.
At last, six months in, she broke free,
But battles still raged constantly.
For one hour a week—
No lessons to speak,
Was all that was offered initially.
The hours crept up through the year,
But only when we made it clear—
We chased and we fought,
Yet still, they forgot,
Till ten more emails appeared.
No change unless we pursued,
Each promise delayed or subdued.
Ignored or dismissed,
Replies often missed,
Till pressure forced something approved.
We’ve sat in meeting on meeting,
With forms, refusals, repeating.
Each expert agrees,
Yet Surrey decrees—
“Specialist? Not worth completing.”
College—the next step ahead,
A way to escape all we’ve dread.
No more failed plans,
No more empty demands,
Just not dealing with school anymore instead.
Yet another EHCP review,
Another chance to be lied to anew.
She spoke without care,
Like it hung in the air,
While I felt I’d been punched in the chest.
Two colleges read and agreed,
With a shrug, “We cannot meet need.”
No pause, no concern,
Just our hopes overturned,
While Surrey just watched me recede.
Her mum sat there, hollow inside,
Just numb, like the day she first cried.
The crash, the machines,
The silent, numb screams—
Yet this is what broke her this time?
The weight of it crushed her in place,
A fight she could no longer chase.
She’d clawed through despair,
Yet nobody cared—
Just emptiness, loss, and disgrace.
So what will it take to be heard?
How many more lives must be blurred?
How much must we break,
How much will they take,
Before they acknowledge a word?
(PS. Susan (AKA Chat GPT) helped me write this - but I did contribute quite a lot)
