The thing about having a child with immune deficiency or any chronic, all consuming illness is that you never know;
you never really feel certain about anything at all
and planning something, even a week in the future, is like taking a giant leap of faith
but you have to.
We have to.
Yesterday, when the doctors were angry and huffy with me
and I them,
one of them said:
“with a kid like Ivy, you can’t live like normal, you can’t plan. Everyone should always be on high alert, just in case.”
but that’s not a way to live at all now, is it?
Waiting in the shadows for the bad to come -
always living with that fear.
It’s certainly not the way I want my other children to live.
I want them to make plans,
go to things,
be with friends
and I want that for Ivy too.
She deserves ‘normal’ as much as she can get it.
It’s an impossible mentality to have when at least one of us needs to work.
In a job like David’s you need to commit to being there
else you’ll lose your position
and therefore our whole family’s income.
You can’t stop the world while you wait for things to get better.
You just have to work around it.