Its the middle of the night
when I meet a teenager with a terrible disease
that is a slow, gradual but inevitable death.
She has a giant pneumothorax and a chest tube to let it drain.
Her lung function is 40% of what it should be.
She has done all the right things.
But she is losing the battle.
She has lost 8 kg (20 pounds) in 6 mons.
She looks at me through her oxygen mask with big set eyes that know what’s coming.
Another family, another wee hour of the morning.
A father still grieving for his lost child.
is here again with another tenuous fragile life.
in severe respiratory distress.
so bad that I can’t take them, they need to go to the ICU.
as I sit there explaining what will happen next.
Dad reaches out and grabs my arm and says
I melt into a puddle of exhaustion and awe.
That this Dad in his grief and his worry would reach out and acknowledge me.
I have a progressive illness.
If my right hip was a lung.
It would wheeze
and collaspe some times (pneumothorax).
It would sputter and retract.
There is nothing as merciless as watching your child or your own body fail you.
I understand on some small level what that’s like.
The fear. The pain. And the complete loss of control.
But in the end my disease will not cost me my life.
And I can’t help but be impressed by the grace and hope
these children and their families find in these moments