Here I sit because my suction machine battery will not keep a charge.
Here i sit because I have to much mucus.
I’ve become a prisoner.
Frustration levels are so high one would think that it’s an exaggeration of how I feel.
I can’t tell you how I feel when I can’t breathe
My jaw shakes uncontrollably, so much so that I bite my lip twice with mouth suction.
I don’t want to stay home
I DON’T WANT TO STAY HOME
I don’t need my vent all day because I can’t breathe. I can’t breathe because I have a mucus plug.
I know it takes so much time to get me ready
I KNOW! I KNOW! I KNOW!
I get moved it hurts, it hurts bad but I want to go
I WANT TO GO, GO, GOOOO!
but I can’t…
I have a million accessories and steps to get me started for the day.
Then in minutes the day becomes something of the past.
Being consumed by the never ending suctioning and cough assist.
I’m sorry too
This was not part of my dream.
We were supposed to be riding your motorcycle into the sunset
Walk on the beach
Cuddle in the mornings
BUT WE CAN’T
Instead we are caught in a nightmare where we get glimpses.
Glimpses of hope and we need to keep everyone of those moments close.
That way each moment will shed more light.
BEEP BEEEEEP BEEEEEEP
… I need suctioning…
