Life will never allow you to get too comfortable, I feel this true to us.
Still quite new to our life of uncertainty we continue to grow to accept things for what they are appreciate things for what they have been and believe in things to come.
We choose to believe, despite the odds, despite the assumptions, some may think this foolish! However hope can lift spirits, give meaning and purpose to life, hope can refuel passion and mend a broken heart, hope can discover, destroy doubt and hope can
heal.
If we have not hope what else is there?
For three years we've watched helplessly through stages of regression day after day of uncontrolled seizures, countless hospital admissions, ambulance rides and specialist appointments Countless trials,
tests and failed medications, I've learnt to sleep with one eye open, to trust myself more than any powered machine.
I've learnt the value of a day, the priveledge of time.
I've learnt I am powerless to the level of understanding and acceptance
for what can not be understood.
As just when I believe together we've found our feet, the walls come crumbling down, there's a new obstacle a new frightening reality that brings an overwhelming feeling of grief, anger and sorrow.. The she should be,
She could be, She would be moments. I battle with myself to often avoid such thoughts... after all it can be of no help, it can change little except our strength.
Some days the weight is exhausting and for a moment I'll give in, I'll cry until
my eyes burn and I'm too tired to cry anymore, but sleeping hurts, my heart hurts and the only thing that brings me back to reality is a cheeky smile that's just happy to have me near.
Is this how it will be, my beautiful little girl and I 💗 will she
ever have a chance to belong outside of her family.
If only Piper could have control of her movements, to understand instructions, if Piper had this ability she too may be able to communicate with her world with the use of an ipad or other such device.
It's heartbreaking to discover the disability products that could open a child's world are still quite unsuited to Piper. Which only ignites my fear! Could Piper even attend a special school if she is unable to do anything? will she be in class while
children raise their hand only to be left in a corner watching her world go by... Of corse anyone who knows a specialist school would think my thoughts quite ignorant, in all honesty I had no idea what to expect, and it upset me to think even amongst our new
world of disability we still did not fit in.
What will happen to piper? by six there is no more Early Intervention, no more Physio, Speech and Occupational Therapist, no more professional support, We would be alone without that guidance, without
the most valuable people, the most integral piece of our world. I'm not sure if we could stand on our own, how could I deliver the level of therapies required. What would become of us?
I guess it's clear by now I was beginning to freak out a smidge
and thankfully our early intervention worker realises this and quickly puts my mind at rest.
Piper will be able to attend the specialist school where therapist will be available to her, she may even attend kindergarten if we would like for that to happen.
I'm so relieved and an appointment is even created for Piper and I to visit the school that we pray she will one day attend.
As I walk through the high iron gates of the specialist school I again feel overwhelmed a part of me feels sad that my little
girls lives are so different and Piper will never attend school with her sister. But again faced with our reality I take a deep breath and prepare to embrace the next chapter.
Walking through the grounds it was nice to see the diversity, the tranquil
setting, the attention to detail of so many specific needs. There were the classrooms with raised hands, computers and high levels of understanding, although there was also high care and everything in between. There are children who lay quietly in their reclining
chairs as they receive Physio, there's a wonderful sensory room with bubbling lights and soothing music which I'm certain Piper would enjoy, there's tactile stimulaton, music therapy, a sensory garden which the students maintain, trampolines to strengthen
muscles and exercise, a liberty swing, a hydrotherapy pool, a path to allow able bodied children to ride their bikes or carers to take others for a simple stroll, it was not the gloomy environment I had envisaged it was friendly, calming and full of life.
the Principal received a happy smile in each room we entered, each student eager to say hello and only too happy to have a little visitor in their classroom.
I left feeling a weight had been lifted, the Principal had given us almost two hours
of her time, offering advice and ideas along the way, she had a kind nature, a genuine interest and compassion! she left us with some final words "rest assures there will be a place for Piper here"
A place... Piper will have a place!
so of course I started to tear when she also spoke of her little school uniform x
And what of kindergarten this certainly seemed impossible who could manage Pipers medications, her peg feeds, her seizures, I thought this to be cruel, for Piper is unable
to communicate, to paint, to sit amongst friends, to play,
After three weeks of strength, knowing eyes and big smiles mainly towards her sister and cousins :) I allowed myself to entertain the idea. somehow the children can switch something inside and
Piper will come alive, arching her back and clapping her hands as though to please them. Piper adores children, she loves noise, and surely the sensory aspect of kinder would be most beneficial for my little stay at home girl, I guess I owe it to her to give
it a go.. so how again is this possible?
The answer lies Through a kinder inclusion program as the government believe every child deserves to attend kindergarten no matter the ability
This program will provide a carer to support Piper during her
kinder day/hour what ever the case may be.
The carer will be trained to feed, medicate and administer seizure first aid, which is wonderful although still I find myself a little apprehensive, so we have management plans in place and I'm thinking this
may all just be little harder for me to get used to than Piper x trusting someone else to care for my baby girl...and what if pipers seizures do not allow her to make it to kindergarten one day? Piper will set her pace, this is comforting to know, even
the smallest session will allow Piper a peek into a big girls day. :)
High temperature days Piper will remain inside, as Piper is unable to regulate her own body temperature this will help to discourage greater seizure activity.
Winter months
we may even cease due to Piper's susceptibility to pneumonia during the dreaded cold and flu season. We're taking small steps into this almighty transition, of course I am yet to run this latest plan past Pipers Neurologist :)
We had the chance to meet
with our beautiful kinder staff this week, Piper will attend Willow's old kindergarten, something Willow is extremely excited about and I must admit walking through the doors to familiar cheery faces left me feeling confident and happy in this latest decision,
that was until my heart sank and I found it to break
all over again.... my early arrival allowing me to watch children dance around their new kinder Christmas tree, running out to show mummy their own special hanging ornaments,
I peered out the
window so to shake the familiar feelings of jealousy and sorrow,
I watched the children outside whizz around on their trikes, I listened to the little chatter and giggles with special friends. I ask myself how is this going to work..
I dont want
my child to miss out on this experience...
Instead of packing a healthy lunch box, I'll pack medications, tubes and syringes, instead of a drink bottle Piper will take her IV pole.
Instead of playing chase in the yard, Piper will remain in her chair.
Piper will receive constant care throughout her time at kinder and it is not lost on anybody what a huge deal this is.
The teacher reminds me how positive even planing for next year is given our situation.
This is so very true and helps to place
things back into perspective,
we are blessed to be given the opportunity and a chance for our little star to shine.
"Children are innocent, non judgemental, they will benefit as much from having Piper as Piper will from having them." These
kind words I cling too, I needed to hear and I appreciated, I also came to realise this isn't only Pipers struggle as this would take a new kind of courage for me to muster.
I can not protect my baby when I'm not there, I can only pray she has
more moments of strength and smiles, understands her new surroundings and enjoys her time, I know the wonderful staff will take beautiful care of Piper, I now place my faith and my world in their hands X
Big sister Willow
When Piper
goes to school can I go to her school with her?" ..
."no darling."
"But she'll be lonely! and what if she can't find her buddy! I could be her buddy!"
I explain Pipers school will be a special school for children that need lots of Physio
and therapy
"I could help her! I know lots already, please mum!"
#lovemypreciousgirls #willow💗#lettinggoofapronstrings #piper #kinderdaysforopp 😱😥😌