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,
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,
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,
Continues to feel,
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.
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,
Without any spasticity.
But all kids are different,
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.
Just ain’t ever gunna change.
But this guy,
Sure ain’t one of them!