home

With my boys home,
The quiet but persistent buzz,
Of life out of sync,
Is replaced with a happy normality,
Glorious in its mundanity,
As we slip back into our daily routines.

Another school year begins,
One less daughter home five days a week,
And one boy walking his way into Third Grade,
Head held higher,
Post another intensive,
Arms dangling longer with less pull back at the elbows,
As focus on shoulder blade mobility,
Neck length,
And soft jaw,
Integrates into his system.
Balance in barefoot noteworthy,
As the reduced tension in the upper body,
Allow him the subtle imperative weight-shift,
And counter-balance,
Challenged more so without splints.
And a smile across his face as infectious as ever,
With new jokes tested,
Facts acquired from his travels shared,
Latest instalments in the epic saga of his current story writing,
Physically shaking him with excitement to read to all.
Bursting at the edges of his curiosity,
Desperate to impart new found wonders of the world,
And beyond.

Everything,
Continues to feel,
Blessed.

But then there is always something to burst our bubble.

You would think I’d have learnt my lesson by now.

But a hidden part of me,
After all this time still clinging onto a scrap of hope,
That maybe this time will be different,
Maybe this time they will finally see what we’ve been trying to show them for years.

I mean this time he’s walking independently after all.

And yet here we stand,
In the clinical corridors of the hospital outpatient cerebral palsy clinic,
Over three hour drive in the pouring rain from home,
And my hope is met with the all too familiar mistrust,
Authoritarian words dripping with disdain,
For what they do not understand,
Or do not want to know.

And worst of all,
No words of congratulations to Isaac,
For accomplishing something that was never ever guaranteed.
No comments of encouragement for his monumental leap in function,
Just a painted indifference seemingly immoveable to his clear pride and joy.

And I begin to quietly simmer with the same infuriation,
That I let boil dry over two years ago,
The last time we brought our false hope to these halls,
When at that point we decided this system could not offer him anything of value,
And would not be receptive to what we were attempting to share,
For the benefit of those who may follow.

They don’t see what I see,
And they never will.

Of SPML,
And the methods of Dr Nuzzo,
It’s we do do that here but better,
And there’s no evidence for long term benefits,
Oh and his knees are 2 degrees shy of straight,
And his feet twist in at rest,
Despite conceding there’s no spasticity,
As it’s all correctable. 

Of Feldenkrais Therapy,
There’s no proof it works.

And yet here he stands,
Isaac aged eight years, eleven months,
Diagnosis of Spastic Quadriplegic Cerebral Palsy,
Walking independently,
Without any spasticity.

Coincidence?

But all kids are different,
They say.
Admitting nothing,
Although their curiosity will extend to a Gait Lab analysis review.

It’s the power shuffle,
That I’m suddenly back dancing,
Me pushing back with the whys,
If you do SPML here,
Why has it never been mentioned?
Why is Botox all you ever offer, again and again without benefit?
Why are you doing major structural surgeries,
When these minimally invasive options are available?

But my heart’s just no longer in it.

At responses of,
It’s all just soft tissue manipulation.
So there’s no real difference if it’s connective tissue or muscle.
It’s only incisions of two inches long not five nowadays.
Most kids need the extensive procedures because their spasticity is so profound.
I’m awash with resignation.

While Isaac is exceptional,
He is not the exception to the rules.

But I no longer have it in me,
To fight the good fight.

I just want to go home.

And so we do.

Leaving them unmoved,
And of exactly the same frame of mind,
Before seeing the boy learning from The Feldenkrais Method his whole life,
Who walked independently for the first time ever at aged eight years eight months,
Just two months after a minor procedure to clear out his built up myofacia,
Who never scored higher than a IV on the GMFCS prior.

Take it as you will.

Some things,
Just ain’t ever gunna change.

But this guy,
Sure ain’t one of them!

 

 

 

 

 

i am not used to walking in the shadows

No sobbing goodbyes,
No protesting against the trip,
How vastly different it is from last time.

Watching my boys,
All smiles,
Embark on their duo journey,
Despite myself,
Fills me with happiness.

And a gratefulness,
For their special bond,
Isaac’s resilience,
And acceptance of how life might be for a while now,
Jet-setting between home and California,
To continue supplementing his learning,
To keep adding to his more.

Not so much as a photo from lessons,
Sent my way,
No discussions of techniques used,
Areas of focus,
New skills discovered,
Uncovered,
Explored,
Despite a daily FaceTime.

My burning need for information,
Scolding my impatience.

And yet I know I’m learning my own important lessons,
In letting go,
In allowing it to happen,
Without me,
Trusting,
Despite my absence,
That Isaac’s journey continues down the right path.

But I am not used to walking in the shadows.

So it takes all my willpower not to badger his practitioner,
To pester my husband for videos,
Hassle for a lesson by lesson breakdown.

Alas,
I must wait,
And on their return,
I can indulge in every little titbit I can extract from either of them,
And scroll my way through the archive,
I’m hopeful his dad has been creating.

And more excitingly,
See for myself what changes there might be,
In Isaac’s movement.

And above all else,
Smother my dear boy in my love,
For missing him is intense,
The sweetness of him,
Has a giant space in my world,
Which I’m desperate for him to come back home to refill.

But for a few more days yet,
His cute little beanied head,
His smiley eyes,
His cheeky laughs,
Through the phone will have to do.

And be extra grateful,
For the little author in him,
Who’s written the best multiple-part epic adventure story,
For me to read along with,
(While being mind blown by his cleverness, imagination and creativity! This kid will probably be a published author by age 12!)
As it unfolds across the globe.

I miss you bub!
Please come home soon!

But actually just keep smashing it!
Mummy’s so proud of you.

 

welcome to 2020

As the new year opens,
I sit and simply marvel,
At what 2019 delivered.

Flicking in amazement,
Through the photos and footage,
From the therapy intensive with Sylvia,
Only two month ago,
Which marked the entering of a whole new developmental milestone for Isaac.

Where he found organisation.

The era of independent walking.

Even writing those words,
Sends a shiver down my spine.

To cast my eyes back across the images,
In full colour,
Which depict a lifetime of skill building,
Compressed into an intensive exploration through movement,
Through The Method,
To reach the pinnacle of independent walking,
Is the sweetest of gifts,
My eyes could ever feast.

As I scroll through video after video,
I am right back in each moment,
As I link long learn strategies,
With current repertoires of movement,
And I think ah ha!
Now I see!
I truly see how we got from a sixteen week old infant,
Helpless in space,
Unaware of himself,
Through the toddler years,
Of recreating for him,
With him,
That which he could not explore himself.
Into a small boy,
Entering into a world that did not fit the shape of his ability,
And therefore had to be modified,
Negotiating a relationship that didn’t look the same as it did for others,
That rarely came naturally,
And definitely not easily.
All the way to his almost nine year old self,
Who displays confidence,
Embraces his personal experience to the world as he knows it,
And smashing through milestone after milestone,
Not just physically,
But emotionally,
Academically,
Even socially despite ongoing speech impairment.

Surprising all around him with his wit,
His humour,
His compassion,
His intellect,
His interest in concepts seemingly beyond his years,
His passion for climate action,
And ridding the world of plastic,
Or his love of non-fiction books,
A genuine fascination for all the workings of this wonderous world.

The person as a whole that Isaac has become,
Stops me in my tracks,
On the regular,
Giving me head-turning moments again and again,
Astounded by his take on the world,
The joke he’s made up,
The point of view so far fetched,
I’m belly laughing.

He’s just such a cool kid.

And while I’m bias as his mother,
I do hear this sentiment reiterated by others,
Genuinely.

And while I repeatedly give testament of The Method,
And how it always did reach far beyond simply improving physicality,
Now standing,
Walking,
Talking,
Thinking,
Interpreting,
Deciphering,
Imagining,
Creating,
In front of me,
Is the living proof,
Of just how wide the net did cast.

And all the while,
Isaac has been living,
The Method always at the forefront of his journey,
But not simply his journey.

But rather being the gate in which the doors to living,
Were opened.

And the rest,
The essence of Isaac.

Which we were waiting to see in the bright rays of sunshine,
Once we helped him wade out of the dark fog,
Of brain injury.

And here we stand,
Making it through from 2011,
To today,
So grateful,
So humbled,
So willing,
To keep taking physical and cognitive steps,
Rolls,
Somersaults,
Pirouettes,
Nose dives,
Leaps,
Twists,
Tumbles,
Or whatever,
Into this new year,
In the direction,
Of opening to more,
As we’ve always maintained,
Bruises and all.

 

First strides will take Isaac,
And his dad this time,
Back to California,
To dive straight back into another intensive,
Like icing on the sweet cake of organisation.

And to think,
In those past two month,
He’s taken to walking with purpose,
Both in and out of the house,
And most recently even first tentative barefoot steps.

And while there is struggle,
And there always will be,
Despite my current bravado,
In greater measure,
There is amazement,
Wonder,
And gratitude.

And did I mention envy?
Because I probably should,
As I’m not quite sure how I’ll cope,
Missing out on two whole weeks of lessons!

Being sidelined for this particular adventure,
Has me glowing a bright shade of green.

But I know Isaac is in the best of hands with his dad,
And I’ll just have to suck it up,
And videocall a lot!

Welcome to 2020!

We mean business!

marching in

Integrating back into home life,
After three weeks abroad,
Has been a blur of jet lag,
Sleep deprivation,
Child sickness,
And many many many welcomed cuddles from my girls,
Whom missed me terribly,
And whom I missed in equal measure.

But most of all,
It’s been nothing short of astonishing,
As to how quickly,
And with such confidence,
Isaac has been integrating his new skill,
Into his daily life.

From walking to the bathroom of a morning,
To moving around the classroom at school,
To even walking from the car into my gym,
And back again.

I hover behind him,
Still giddy with the wonderment of it all,
And protective should he need to correct his balance,
But more often than not,
And as each day goes by,
I mostly go unutilised.

And I am still in awe.

And the amazement of his sudden leap in progress,
Hasn’t gone unnoticed,
Spreading far and wide,
With ongoing whoops of congratulations,
And gob-smacking surprise,
Flooding in.

And best of all,
Is the pure joy Isaac has,
In sharing,
Or showing,
His news.

That is nothing short of pure magic.

And two short,
Very busy,
Jam-packed weeks,
Post arriving home,
And all has been forgiven,
Or forgotten,
That mummy was away so long,
Or that I took Isaac away from the comforts of home-life,
And family life resumes.

And we can now submerge ourselves in the pre-Christmas excitement,
And the chaos,
That comes with this time of year,
While embracing the continued wonderment,
Of our incredible little man,
Who really will be marching into the new year!

 

Somebody pinch me!

I still can’t believe it.

2020 will no doubt be filled with more magic.

Stay tune!

The end of Chapter Twenty-Eight

isaac beyond limits

“Remember that at the heart of your child’s successful development is the process by which his brain becomes better and better at organising movement, whether that movement is reaching out to grasp a toy, talking, walking, expressing an emotion, or solving a math problem. All of this is accomplished through differentiation and integration..

It is an ongoing process of getting better and better at perceiving differences, and movement that requires constant change with attention leads to perception of differences and is at the heart of developing those abilities.”

Words by Anat Baniel Kids Beyond Limits page 63

what does matter

“It is not the developmental milestone itself that matters.

What does matter is the underlying process that leads the child to accomplish that milestone.”

Quoted: Anat Baniel Kids Beyond Limits Page 87.

home stretch

As I allow myself to indulge,
In the momentous leap,
In Isaac’s progress,
Relishing in his self pride,
As well as my own,
I’m folded into the warm arms of reflection,
Of our journey leading to this moment.

And it’s a loaded past.

The years of anguish,
Of fighting against the unknown,
Shackling me to a stunted version of myself,
And a crumpled image of Isaac’s future.
But like the story of the ugly duckling,
The muddied path we trekked down,
Day after day,
Began to morph and brighten,
Slowly but surely,
Turning into a tranquil wander through the gardens of wonder.

But we had to be patient.

And as I’m blessed now with retrospect,
Of knowing we found the ability to turn our journey from duck to swan,
From negative to possible,
Of knowing we chose the right imperfectly perfect path,
That allowed our glorious wings to spread,
Take flight,
And soar us beyond what we could have ever hoped,
And I’m more thankful than ever.

And thus,
The timing couldn’t have been more perfect,
For me to take three days of deeper reflection still,
Of exploration of my own movement,
Through an inspiring parent seminar,
Lead by Sylvia,
To cement further the Feldenkrais method,
Into my life.

And I feel like I’m floating.
Blessed by the power bringing together,
A room full of like-minded mums,
With a passion,
And hunger to learn,
Could generate.

And as we submerged ourselves into this shared experience openly,
We energised each other,
To the point it was almost palpable.

Empathetic to similar journeys,
Down a scary,
Unexpected challenged-path,
We cried together,
While becoming a cheer squad for each other’s future,
And child’s future,

While in the warm embrace of the method,
To find a more achievable place to reside,
And with greater strength to tackle the monumental task,
Of parenting additional needs.
I’m humbled,
Bordering on a giddiness of the possible.

Isaac has been my guide in our journey,
I’ve followed him through movement,
Until I myself transformed,
My thinking,
My perspective,
My ability to live,
Let go,
Be fulfilled.

And through my own guided movement lessons,
Have found my own physical grounding,
To my true self,
And to the world around me.

I am connected.

We may never find the straight line in life to follow,
We may never fit the ideal mould,
But we broke through it,
And we paved the way for ourselves,
In all directions,
All orientation,
For a more self.

I am light in my heart,
As well as on my feet,
Filled with an eagerness for more,
More of this journey,
More lessons into understanding,
That through your awareness of movement,
Everything else will follow,
And it only gets better,
And better.

And on the eve of Isaac’s third and final four-day intensive,
Back in California,
Even as I sooth his tear smudged little face,
That wobbles once more with homesickness,
Spilling into despair,
I’m feeling so fortunate,
For the opportunity to bring our journey here,
To an end this way,
And overwhelmed now,
But no doubt smiling tomorrow,
I ask him to trust me once more,
And allow the process to unfold,
And be as brave as he can.

And selfishly,
I’m hungry,
Ready to embrace wholeheartedly,
With total presence of mind,
Another four days of indulging in the methods wisdom,
Off the back of such a moving (both literally and metaphorically speaking) weekend.

And then,
It’ll be time,
To return home.

As the time,
The distance,
The missing,
The longing,
Has been real,
And at times too much,
But I promise you,
My darling girls,
Mummy is coming back,
Her very best self yet.

And Isaac,
Well,
My sweet sweet boy,
You’ve smashed expectations outta the park,
And entered into a total new realm,
Still unknown,
But shining brighter than ever before.

We’re on the home stretch now buddy!

We’ve got this!

A big thank you to Sylvia, and the mummas of Parent Seminar Dallas Texas November 2019. Xx