We are consciously trying to prove ourselves,
To show we are enough.
Filling the internet with memes of positivity,
Expressing the needs for some self love.
We are encouraging each other to be one off's,
To embrace our unique ways,
Whether that be a love of dungarees and unicorns,
We're individuals... the memes say.
But here's the thing that does not sit right,
In this doubting tummy of mine,
They seem a little hypercritical,
Maybe my hope has worn with time.
We have lived 'unique' for 10 years now,
And in honesty for most of it,
Professionals, educators and myself,
Have spent that time trying to make him fit.
To fit him into the curriculum,
To fit him in with fellow peers,
To fit him into a certain box,
Hoping extra support will appear.
Trying to squeeze him into peg holes,
Trying to label him some more,
Trying to push ourselves even harder,
When we were already broken on the floor.
Diagnosis took until he was 4,
A genetic disease that effected his brain.
Then we found his gene fault 4 years on,
The chink in his chromosome chain.
More medicines and more Dr's,
Quickly rolled in with the tide,
As this family of three stumbled on,
With Joubert syndrome by our side.
He is rare, and individual,
He is all he has ever been,
But all his life, for right or wrong,
He has never truly just been seen.
He is a list of symptoms in the eyes of some,
Or a page of learning goals never hit.
As grown ups we say 'we are enough',
Yet we show him you don't quite fit.
He can dance and sing and write you songs,
His physio taught him last month to hop.
He beats me now at video games,
He is the boy who never gives up.
He loves without question and dreams big dreams,
He admits he finds things tough,
But he gets up and smiles and hugs his dog for support,
The boy who never gives up.
For someone who is living with a 'wonky' brain,
He's the face of determination and pure grit.
And if people cannot see him just as he is,
Why would he ever want to fit?
#rarediseasesday2018 #joubertsyndrome #wecareforrare
