The Ocean Alley song lyrics,
“Where do we go, where do we go, from here”,
Always swim around my head when we appear to arrive at a junction of importance,
Particularly the end of a calendar year.
I fill with a nervous energy,
That we didn’t quite accomplish what we set out to,
And that what’s not finished,
Feels to grow in weighty importance.
While a new year does,
Shiny and appealing in it’s newness,
It’s blank canvas of possibilities,
I have begun to feel a shivery haunt,
Of passing over the in-progress,
Into it’s open expanse.
And the direction in which to take,
To reach the finish line,
Feels impossible to decipher.
As I blast Knees through the house,
Because I’m sick of the sound of my own rendition,
Feeling completely awash with uncertainty,
That it’s just that,
The element of unpredictability,
And my own impatience.
And I’ve never done well with unpredictable.
I’m hardwired for the comfort of the familiar,
And a need to know,
I have certainly lived and grown with a huge unknown,
Since the birth of Isaac,
And balanced out my responses in varying degrees of success,
During his journey within mine,
But it doesn’t seem to get any easier.
And every time something pops up,
There’s a setback,
Or an unforeseen outcome,
It feels brutally personal,
Or pure ecstasy,
Depending on the situation.
And don’t for one second misunderstand me,
Isaac has smashed-it-out-of-the-park,
At every stage of his diagnostic expectations,
But on this merry-go-round,
One thing always takes,
And seemingly he can’t just have it all.
Can be very discombobulating.
It’s not ever about being disappointed with Isaac,
But the injustice of it for him,
Just breaks my heart.
But as I’m repeatedly told,
That’s the nature of beast that is brain injury.
And the rotating energy pool that Isaac has,
That us neurotypicals,
Don’t have to contend with,
Therefore cannot completely appreciate,
How real the limits are,
And just how much time it takes to replenish,
Re-fill the energy-tank,
And how there’s only so much that can be actioned in any one moment,
At a certain reduced speed,
And for a certain diminished length of time.
Particularly when something is new,
Or there’s a drastic change in circumstances.
And what’s both new and drastic for Isaac,
Is that he is walking,
The integration of his legs into his self image,
Has been huge over the past year,
The added variable of having ankles that move and wobble,
Without the fixed structure of an AFO,
Has vastly increased demand on his system,
And mixing all that together with the increased expectations of school,
Social interactions and life of an almost ten year old,
Suddenly the reverting to slurred incomprehensible speech,
The return to excessive drooling,
The reappearance of the relentless chicken-wing right arm jutting behind him,
And lake of progress to his upper limb function,
Makes a whole lot more sense.
Even though it still isn’t fair.
But as always,
Because despite yearning for a different outcome,
I have the privilege of seeing it from this perspective,
A gift of the Feldenkrais Method.
And while I’m still first and foremost a mum,
Prone to the ferocity of maternal claws in protection of my babies,
The need to fix things,
To put the Band-Aid on,
Making everything better,
I cannot fix this.
Isaac is not broken,
He has a nervous system that needs the gentleness of a mothers kiss to the forehead.
And the continued kindness of the Feldenkrais Method.
And I’ll just have to keep singing Ocean Alley,
That the Method always knows where to go from here,
And the rollover of one calendar year to another,
Is nothing more than an invisible line,
To the same place we already are.
The End of Chapter Thirty.