Oh, to be a child again!
Even though it was *coughs* some considerable time ago, I recall the bliss of opening a book and jumping into magical worlds filled with enchanted forests and mystical creatures; worlds where good triumphed over evil, where anything was possible.
As a result, I thought I’d (yet again) allow my imagination to run free in this post and adopt a similar theme. However, Gentle Reader, this will be no easy read. This will be no feeble fable, nor is it a fanciful story of legendary deeds and mythical beings. There are no faeries or Cornish Piskies (WARNING: spoiler alert coming up!) nor is this an Olde-English tale of “Happily Ever Afters” or of Knights in shining armour saving the day.
So, you brave enough to enter another world with me?
Okay, hold my hand. Let’s go. One…two…three………….JUMP!…….
Once upon a time, in a land far, far away, lived a beautiful little Princess.
Her home was a palace in the Kingdom of Broccolia (see what I did there? #genius!) with her parents – the King and Queen.
Throughout the seasons, the castle walls were bathed in warm sunshine and swathes of fragrant flowers filled the garden where the Princess played.
It was a happy place. A safe place.
The Queen loved her precious child more than life itself and her heart was filled with adoration…but it also held a pool of infinite sorrow. A sorrow that no parent should ever have to endure.
For her child was a golden child; a rare child who possessed magical powers; virtuous powers, but few would ever wish to understand them. And although she embraced everyone regardless of their differences, many shunned the child. Few wished to be a part of her life.
Thankfully, the child was blissfully unaware of her effect on others and her days were filled with laughter, learning and much joy. She danced, carefree and barefoot, amidst the flowers.
And each night, when the stars shone like diamonds and the child prepared to slumber, her mother her held in her arms and sang the same gentle lullaby, in the hope that her daughter would forever hold this in her memory.
But one evening, as the Queen lay alongside her child sleeping softly, a single melancholy tear rolled down her face.
“What feeds your sorrow, my love?” asked the King, as he lay a tender hand upon her shoulder.
“One day we must go to Paradise, what will become of our child?” said the Queen.
“She will remain here until it is time to join us” he replied.
“But who will care for her?” asked the Queen.
The King consulted with his trusted Soothsayer, but alas, no answer could be found.
After much contemplation, the King replied “We shall seek a guardian for the Princess”.
But this quest would require the King and Queen to leave the safety of the castle. It would entail a perilous and exhausting journey. Nevertheless, it was a journey they were required to take.
However, beyond those walls hid fire breathing dragons and the village at the foot of the castle lay cast in darkness, for it had been affected by a foul and irrevocable curse which was sweeping the land – the curse they called Marginaliseatus-Egocentricum.
This mission would necessitate much courage.
And so, with hope and trepidation in equal measures, the Queen, accompanying the King, embarked upon their journey.
The inhabitants of Broccolia comprised of a number of dubious clans including: the Ne-er-do-wellers, the Nimby-ers and the Gawkers. Tales of the Princess had reached these inhabitants, none of whom wished to cast their eyes upon her, for they believed that to be in her presence would place a wicked curse upon their own offspring…a curse far too strong for the Alchemist to remedy. Met with great hostility, the King and Queen swiftly passed by their dwellings, travelling onwards to more noble clans.
On reaching their next destination, the King and Queen shared their plight with the clans people, who listened intently. And after much deliberation, decreed that they could never provide a safe haven for the Princess. For whilst they were fond of the child, her mere presence within the community would change their lives immeasurably.
They believed the child could contribute nothing to their community. She would be a burden.
And thus the quest continued. Through treacherous, snow-capped mountains, past troll inhabited caves and over desert plains, the King and Queen journeyed on, until they came across a barren and dismal land where no flowers grew and no birds sang.
As they approached the only timeworn residence, perched precariously at the edge of an abyss, a corpulent and scaly man, with open arms and a deceitful smile approached.
“Welcome, welcome!” said the man, with insincerity and gluttony shining in his raven black eyes. “I am Diabolos Alicanto Ministry. How can I be of service?”.
With foreboding, the King and Queen presented their plight.
The man adjusted his golden robes. “When it is time, she must come here. She will have a room of her own and be fed and watered by my servants”.
This man strove to uphold the pretence of nobility, but keen to feed his fiscal desires, he then said “But of course, there will be a price to pay. The Princess will no longer retain her title. She will no longer dance or play. You will proffer your castle and all of your possessions. She will become exactly as the others have who ventured here. She will become of the Now Forgotten Clan”.
Aghast and in fear of what the future could hold for the child in this place, the King and Queen rejected the proposal and continued on their quest.
…but where would they go to next?
Okay, let’s get back to reality, shall we? Hold my hand. Ready?
Crikey, that made for a depressing read, didn’t it?
Ah, but Gentle Reader, as you may have gathered, this isn’t a tale of another world. It’s actually based on the harsh reality of many parents of children with additional needs; the question we have no other option but to contemplate, should our children outlive us…
What will happen to my child when I’m gone?
And it’s something no parent should ever have to think or worry about, isn’t it?
Will you care for my child? is a question we should never have to approach anyone with…should never have to ask with bated breath.
…but we do. If we love our children, then we may have no other choice!
Many parents of non-disabled children will drop off this mortal coil in the comfort of knowing that their (perhaps, hopefully, now adult) kids might be okay. Life may not be easy at times, but they might get by. Maybe.
Whereas our children may not even be able to attend to their own basic care needs and may well be reliant on others for the rest of their lives.
But who are those others?
Friends? Family? Local Authority? Who knows!
I’d guess that many parents of children with additional needs don’t have the luxury of access to enough money to purchase the perfect facility with the perfect staff in order to prepare for the future.
Most parents won’t ever have that peace of mind.
How must it feel for a parent who worries about what the future might hold for their child? Well, feel free to step into my head, just for a second, and I’ll give you a little insight into some of my thoughts…
No-one wants to or is willing to care for Hannah – After all, why should they? there’s no benefit in doing so.
As a result, she could end up living in a loveless facility where disillusioned, underpaid staff talk over her and not to her. A place where staff come and go. Maybe they’ll hardly interact WITH her…unless they have to.
Will she get to sleep in clean, dry bedding each night?
What’ll happen to those photos of us together? Will they be thrown carelessly in the bin, or will she be given the opportunity to look at them from time to time?
Will she always be safe? Free from abuse?
No-one will bother to visit her.
Birthdays will come and go without acknowledgement…unless someone thinks to note it down from her case file.
Perhaps the last hug she’ll ever get will be from her daddy or I. Maybe no-one will ever think of comforting her.
Will she be talked at in that dreadfully loud fashion we often see, where everyone with a disability is considered to have a severe hearing impairment?
She’ll be directed, expected to comply. What if she doesn’t?
Maybe some may like her, but they’ll come and go. Maybe some will tolerate her. Some will dislike her. And their attitude towards her will reflect their feelings.
I won’t be able to protect her anymore.
Maybe she’ll die alone, in pain, because everyone missed the signs. Because no-one bothered to know her anymore. Because no-one really cared.
No-one will be accountable.
No-one will grieve for her.
No-one will attend her funeral but the vultures will be eager to pick the bones.
She will quickly be forgotten.
My beautiful, precious girl.
Perhaps if you don’t live in our worlds, you’ll consider this is all a bit dramatic. But guess what? There are countless reports of younger, older and people with additional needs being subjected to abuse and neglect and dying in this ‘green and pleasant land’ of ours – Winterbourne, Connor Sparrowhawk, Ely, Longcare, the list is endless. It happens to our most vulnerable, make no mistake about that. But of course, such is life that we keep our heads in the sand, until something affects us or a loved one. We remain blissfully ignorant to it all.
Out of sight, is out of mind!
Did you find any of this difficult to read?
I can’t even apologise. Because it is what it is.
But try and imagine, if you can, what it was like writing it….and then, go a bit farther and imagine what it’s like living with those thoughts; those crushing, agonising fears.
It’s not easy. Not easy at all. Maybe some will consider I ought not to be having those thoughts…and fears. Maybe I ought to be “looking on the bright side” instead of being all pessimistic. Well, I guess, given that I have no other option but to plan a whole lifetime for my (currently) eight year old child, then how could I not? I can’t predict what the future holds, however, for me, only a total fool would fail to consider the pitfalls.
But regardless, I won’t allow these fears to become all-consuming. After all, we have a life to get on with!
However, each and every night I’ll continue to sing that lullaby to my girl, in the hope that when my bones become dust and she’s all alone, she remembers that she was once loved and cherished in this world…and will be so in the next.
Until next time…