throwing it all to the wind
After I cry through days,
That pass in a thickness,
Of movement wading through an altitude change,
Cotton wool stuffed ears,
And wind burnt eyes –
I finally receive the shot of adrenaline to the heart,
Which brings me to the surface of myself,
Gulping fresh air into my lungs –
And it allows me to pose the argument,
But, Isaac isn’t sick?
Yes he has cerebral palsy,
But he isn’t sick in an immunodeficient sense.
He rarely had a cold,
No raging temperatures,
He’s not void of colour,
Anemic, hollow sunken eyes,
He doesn’t have difficulty breathing,
He isn’t losing energy,
And he certainly has a spark about him.
So we seek out to question what a mitochondrial disorder might present like,
Away from the pure science of blood reading,
And all the answers point back to the obvious fact,
That Isaac isn’t sick.
He was improving, progressing,
And he wasn’t going backwards, falling to illness.
So here I am really looking at him,
Screaming hold up!
The latest diagnosis doesn’t fit the picture.
And flat out desperate to disprove.
And it occurs to me that the scientist behind it,
Never even bothered to assess Isaac clinically,
He read his numbers off a screen,
And theoretically joined the dots.
While our bright energetic passionate one year old,
Commando crawled around his feet –
With no acknowledgment given.
He was throwing around diagnoses like meaningless banter,
And the vulnerable get it served as gospel.
I’m suddenly in a spin,
Chasing my tail,
Relief is desperate to sweep over me,
But fear still with its tight grip on me,
Not knowing which to give into.
I’m in a state of utter misplacement.
And so transpires an eight month witch hunt.
Where upon second, third, and forth opinion confirm –
Isaac has no signs of metabolic genetic defects.
It’s determined that in fact Isaac’s results are within normal range.
And absent of some very significant indicators to consider such diagnosis.
And so even the science finally drags its head away from the numbers to acknowledge Isaac’s positive clinical development.
And virtually as quickly as the tornado ripped through our lives,
Vanishing from sight.
He doesn’t have a mitochondrial disease.
And for the first time in 246 days,
I feel my heart rate slow to pace,
And air fill my lungs.
I breath it out,
And walk from the hospital,
Throwing it all to the wind.
Artwork by Danie Drakewalter
The end of Chapter Four