drenched in denial/running from acceptance at full speed

by thankfeldenkrais

I don’t know if acceptance ever comes.

I long for it,
And yet I loath to be defeated by it,
If it arrives with complacency.

I am reminded that when ranked,
Assessed and tested,
Isaac continues to score a GMFCS level 4,
Second lowest on the chart.

A prognosis less than ideal.

But then I see the things he can do,
The potential for the places he will go,
And I passionately do not accept,
Their score,
Their method to judge,
Their predictions for the future.

But then finding myself yet again,
At a power wheelchair trial,
For the just in case,
(I tell myself defiantly)
I fear my lack of acceptance is dripped in denial.

But if my lack of acceptance has me chasing a trial at odds with the system,
To broaden the search to the possibility of a scooter,
Or at least a smaller,
More age appropriate wheelchair option,
Then I feel my stance validated.

We have not cookie cutter children,
One shape does not fit all,
And an organisation that promotes simply one brand-make-model,
Based on their monogamous liaison with a supplier,
Deprives our children of their uniqueness,
Their possibility,
Stunting them as they eliminate choice for their own ease,
And ulterior motive.

So I challenge,
Daily.

Me versus disability.

Me versus acceptance.

Me versus denial.

Me versus the system.

Me versus…… every other obstacle that rears its ugly head as time goes by.

But what I don’t challenge is my love,
And pride for Isaac.

And to see him take on more challenges than I’ll ever know,
Humbles me.

To see him negotiate an adults scooter with ease on first attempt,
With posture perfect positioning despite feet not reaching the ground,
Because the incentive to sit forward from the pelvis is achieved via the firmness of the seat,
The freedom to be in-charge of his own body,
And the position of the steering-bar.

To witness him drive a child’s wheelchair with joystick control on his right (“much too difficult for him”, “weaker”, “helper” (cringe)) hand,
Expertly,
And smiling all the while,
Helps me kick acceptance,
Or denial to the curb,
Because we have action,
Productivity,
A strive for better.

And we branch out,
To widen his horizon,
As well as our own,
And from experience thus far,
The outcomes,
Reach far beyond expectation.

And if they don’t,
Not demonstrating potential for improvement,
Well,
At least we can say we tried that,
And continue the hunt elsewhere,
Which I vouch I can do drenched in denial,
And running from acceptance at full speed.

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