dance down the path of diversity
As the hours of therapy continue,
Exceeding more than I could possibly fathom,
We can see we are building back up,
From where he fell,
After his adenoid-tonsillectomy.
Speech therapy has been grueling,
As Prompt shows him again how to form the shapes and sounds,
So devastatingly lost.
And it does pay off,
We almost have “done” back,
Such a powerful part of his vocabulary,
Despite the jaw and tongue still having lost the separation/differentiation required,
For clear pronunciation,
And the Da sound sounding more like Na,
We power on with more optimisom,
Than we’ve had since the profound loss.
And the growth is not isolated to speech,
A combination of all that’s been learned through Feldenkrais,
A sense of reduced effort,
Finding a way to minimise the challenge,
In order to perform with ease.
But every step is still a learning process,
As much as Isaac.
He guides us,
As much as we guide him.
We seek out Botox again,
For injection in his Gastrocnemius,
And this time his right thumb to see if we can help it become part of his body imagine,
Because we don’t have all the answers,
We’re still in a trialling process,
To see what helps,
But we know we will once more face a neurological shift,
As his sense of self is altered again,
With a new organisation of his system,
Muscles he utilises the best way he can,
In an attempt to allow others to have their turn.
It’s always risky,
It’s never going to be a magic cure,
That answers all his challenges,
We need to explore the pros and cons constantly,
Of his equipment,
His choices in movement,
What drives him,
What he desires,
As well as what we desire for him.
I am undeniably tired,
Tired of the twists and turns,
The complexity that is a compromised nervous system,
Tired of the constant search for the ideal,
Ideal way of incorporating therapy into life,
Ideal balance between mum and therapist/advocate/carer.
Tired knowing that there is no finish line.
But what has always outweighed my fatigue,
Is my passion,
And my belief in Isaac.
It’s the tonic that injects the energy to keep me going.
If he can keep going the way he’s going,
I’ve no reason to complain,
And everything to gain,
Surprised by how quickly we’re nearing the end of another year of Isaac,
A year of such highs and lows,
It really must become a sum of all the little things.
The little improvement to his walking himself around the therapy table,
The grace at which his lying-to-sit now flows,
Or his cooperation at allowing our practitioner to work on his tongue and neck which not so long ago was far from tolerated,
Or the increased ease at which he sits with feet tucked beautifully under his bottom instead of wide in W sit,
And more impressively how he told me he was going to sit this way all by himself,
How he wanted to show me,
And so he did.
How every session we are getting closer to uncovering more lost parts of himself,
New ways to turn,
To pick up,
To sit to stand,
We dance down the path of diversity,
With one constant goal,
To fill in the gaps.
Mostly I’m so absorbed within it,
I forget to look up,
I have moments where I take a step backwards,
Outside of myself,
Just how phenomenal his progress,
How extraordinary his journey,
And how far he still continues to come,
Through this incredible therapy,
And without question through his superhero attitude.
Despite the list of emails I need to write,
The grants I need to apply for,
The suppliers I need to line up for equipment trials,
And the preschool meetings I have to attend,
I don’t feel so tired anymore.
I simply feel humbled,
And blessed to be on this road with him.