very very sorry

by thankfeldenkrais

As the days go by,
And the bubbly saliva fills his mouth again,
And the tongue seems incapable of movement,
My fury builds further at the surgery,
That has claimed so much,
Yet given nothing in return.

It feels like now,
We must start from scratch.

Lost is any sense of timing with his tongue for speech,
The clear crisp sounds of “t” and “d” have faded into a lazy “n-ya”,
Blurring the words more than usual,
Expelling increasingly more frothy dribble,
Which seems to be adding more than ever to poor pronunciation,
Along with the profound lag in defined movement of the tongue and jaw.

The beginnings of Isaac separating his tongue from his jaw,
And lips,
Now has regressed back into a single entity,
Using the entire mouth structure as one apparatus,
As if the surgery has fused it all together,
Erasing his memory of learned words,
And what it was the mouth did to produce them.

And the thought of all those hours,
Months of work washed away in one foul swoop,
Is sickening,
Leaving me utterly defeated,
Petrified of the re-climb.

And like usual so much of that fear comes out as anger.

The surgeon feigns ignorance,
Or at best indifference to the results,
Simply claiming he’s never seen anything like this happen before,
And come back in three months for another check-up,
(but you’ll need to pay for that consultation as it’s not covered in post-op review),
Dismissing the severity of the outcome,
Completely unfazed by my distress,
And claiming zero accountability.

When I am required to prompt him to physically examine Isaac’s throat,
Tongue and mouth,
To see if structurally he had wounded him,
Feeling this would have been standard review practice,
He was almost thrown aback,
And I simply fall into more doubt and regret,
For the complacency alone towards a small child’s only post operative review,
Where he wasn’t even planning to look into his mouth,
Screams loud and clear,
That we will not find our answers here,
That the rate in which they work through these procedures,
Alone speaks to their trigger-happy attitude,
A focus on quantity not quality.

But I press one,
Querying as to how many cerebral palsy children he has performed this op on,
And his honest answer is very few,
And the ones from memory didn’t talk prior to surgery,
So had little to compare mouth function to.

And it turns out,
There isn’t any specialist out there,
Or that he is willing to disclose,
Who does specialise in these operations for kids like Isaac,
Who may have more insight into what’s going on.

A question granted I should have asked prior to surgery,
And yet one that never crossed my mind,
Deferring to the expert to guide me,
The reassurance of its routine nature,
Comfort in itself,
And no mention of side-effects of this kind.

Plus once more,
The lure of the cure was far too great.

And I never thought it would lead us here.

So another day wasted for a ten minute consultation,
Leaving me with less than what I arrived with,
Has me drag my sorry self,
And Isaac back into the elevator,
To face the two hour drive home,
Sinking in my defeat,
Burning with a violent sense of anger,
And consumed by guilt.

For the rebuilding and the hard work now falls back on my shoulders,
On Isaac’s entire system,
And we’ll cause the specialist not another moments thought.

post op novemeber

There are tears,
All the way home,
And all I can do is tell Isaac,
I am so very very sorry.

And hope that he will forgive me.