how they see him

by thankfeldenkrais

One of the hardest things for me,
As I get sucked further and further into a world that I never knew existed,
Before Isaac was born,
One I never thought I’d have to navigate,
Is the moments where I get a glimpse,
Of how other people must see him.

Because he is an extension of me,
He brings me love,
Joy,
Humour,
And so much hope,
As the Feldenkrais sessions continue to teach him,
And teach me,
How much potential is inside the small compromised nervous system,
Of my beaming three and a half year old.

He’s my Isaac.

But for others,
I get that it must be different,
Because they don’t know him,
They’re not looking at the right things,
Or rather not seeing through a mothers eye.

The system a repeat offender,
With the scoring,
And the formula to follow,
Take one look at the paperwork,
And Isaac,
Despite how sunny his smile,
Scores a 4,
Second lowest,
Therefore the prescription is,
(“Because he’s smart”)
Power wheelchair,
Once no longer deemed “age appropriate” to use a pram.

Naturally we question the need,
Debate the negative effects of finding the wheels too soon,
Of the impact on his self image,
The disruption to his booming progress,
But we are railroaded,
By endless examples,
By invoking doubt into our wishful thinking,
By the expectation of being realistic,
And practicality by the nature of the application process,
Taking years through a funding bodies.

So we agree to a trial,
Despite every bone in my body,
Protesting.

And it dawns on me again,
The way they see him.

The way they smile at me with my big hopes and dreams,
While they sit satisfied in their proof,
Of checklists and assessment tallies.

And while my logical brain knows there is no cure,
For cerebral palsy,
I can’t help but sometimes feel,
That Isaac could still learn his way past his challenges,
Possibly even walk away from some,
Or at the very least,
Be given more time to try.

But how can I ever be sure?
About any of it?
And so far I haven’t been brave enough to take any chances,
Because what if I’m wrong?
The stakes are too high.
I can’t that risk.

Still ever so reluctant,
But present,
I stand back,
As they load him up into an electrical wheelchair,
That seems bulkier than I expected,
More cumbersome in real life,
With an overkill of the latest tech gadgets,
And bodily supports.

All I can do is stare,
Unable to put my figure on how I feel,
Or what I see.
Becoming sweaty with anxiety as nothing matches up,
Confused by conflicting information being sent to my brain,
Until suddenly I realise,
I see him the way they do,
I see him,
And he looks disabled.

wheelchair trialBW.jpg

And I breakdown in tears,
In guilt.

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