Standing at the kitchen bench
Surrounded by medicines and heartbreak
A future unquantified
Broken only by the constant repetition of medication and struggle
This was not the future I anticipated
It’s not even a future I want
Will my son be like this forever?
Despair settles like a cloak over my shoulders
Anguish spreads its tentacles throughout my veins
A son that doesn’t even register my presence
When I go to collect him from his cot
What happened to the world of happy children?
Who respond with smiles upon seeing their parent?
Who look up eagerly and stretch out chubby hands?
My future yawns in front of me
Cavernous and never ending
The world of disabilities
Feels like a chain around my neck
I can see no way forward
No way through
All I know is that to keep going
Is going to take everything I have.
I can honestly say that these weeks were the hardest of my life. Being told my son had infantile spasms and had already sustained “significant brain damage” – there are no words adequate to describe those emotions. Being told next by the doctor that “left untreated, he would die a slow and painful death” are words I will probably never forget. This was me staring at my younger son in his hospital cot, wondering if he would survive – or not. And if he did survive – in what capacity would that be? What kind of future did he – and we – have ahead of us now?
Navigating Life's Curveballs 