everybody develops according to what they do
I can only presume,
That because there is no one answer for Cerebral Palsy,
So little conclusive clinical trials conducted,
That we invariably face so many contradictory messages,
And are presented with so many difficult decisions,
As to how to progress with Isaac’s treatment.
I am always so confident of where I stand,
Until going to yet another CP Health Clinic,
Where the system are so ready to throw their weight around,
With unwavering authority,
And little regard for alternative methods.
I feel as if I’m on a never ending carousel,
Making me light-headed,
As I’m spun in rotation repeatedly,
Only momentarily stopping to be spat out at altering points of view,
And despite my motion sickness heavy in my gut,
They want answers from me,
And rarely allowing me time to construct my reply,
Or contest their ethos.
And although I was so sure that this would be the time,
And with sophistication,
Explain just how Feldenkrais works,
And is working for Isaac,
The motion sickness inevitably tangles my words,
And I become pale with paranoia,
Anxious with doubt,
For what if actually I’ve got it all wrong?
Because they seem to know what they’re talking about.
And at two weeks out from his third birthday,
Botox injections is what’s in contention.
As his “hamstrings are too tight”,
“His calves are too short”,
“His thumb too clenched”,
“Supinator’s overly contracted”,
And he “Can’t get enough range”,
It’s virtually impossible not to be lured into the light,
That is the magical wonders of Botulinum-Toxin injections,
Despite my apprehension and skepticism,
Which is provoked by the fact I feel I’ve learnt enough to know that firstly,
They are testing the wrong things.
They want long resting muscles,
Test range of motion in a static position,
And their comparable model,
Is a neuro-typical child of the same age.
There is no question that high tone,
Is interfering with the way Isaac’s muscles behave,
That he has limited flexibility,
And that when measured,
His muscles are short.
But my growing confidence in Feldenkrais,
Has me unable to stop myself from asking the question,
Because as yet,
Isaac hasn’t learnt to function,
In a way that requires his muscles to behave any other way,
That will give him the range of motion,
Or muscle length,
They so desire.
But then again,
My doubt knocks on the door yelling,
But what if we do need long muscles in order to improve function?
And I’m frightened,
Not to have him injected,
As equally as I’m terrified to have him injected.
And while consciously trying not to lose sight of the fact,
That everybody develops according to what they do,
Through my wavering indecision,
I can’t help but recognise,
That if we don’t try for ourselves,
We will never know.
And perhaps at the very least,
I might get a moments peace from the second guessing,
And have the questions so desperately debated,
To no avail,
And so once more,
With my scribbled notepad tucked under my arm,
We go back to the haven of our Feldenkrais sessions,
Where thankfully help is waiting to dissect our options,
And strategize what it is we could do with Isaac,
That could in fact make Botox injections,
Of a benefit to him functionally,
If we do decide to follow that path.
And as my head finally stills,
As I step off the merry-go-round,
Until next clinic,
I take a moment to reflect just how well he is doing,
Despite the number on the ruler,
Which they try to define him by.