The habit

Jennifers, lets just call them habits, have resulted in a kind of “walking on pins and needles” feeling in our house.

It’s kind of like trying not to wake the sleeping baby,  only it happens every minute of every hour of every day.


It’s like being in a heightened state of awareness or stress constantly.

It’s palpable, and these have become our everyday habits……


Don’t drop anything on the floor, don’t hit the fork on the plate, careful putting the glasses away in the cupboard….

Don’t sneeze or cough,  don’t slam the door,  don’t leave the door open,  is it too cold,  is it too hot?

“Why is she complaining now?”

Is it wind,  is it her hip,  does she need to do a poo?

Is she bored, is she happy,  does she just want to turn over?

“Don’t forget the medicine,  what dose are we on now?”

“We’re late, hurry up!”

I’m tired….
Me too…….

“Do we have an appointment this week?”  Fuck me not the dentist again!!”
“Can you go?”
“Argh….. can’t you?”
“I went last time.”



“Careful with her foot, it’s cramping again.

Careful with that arm,  it’s really stiff today.

” Don’t lay her on her side, I’ve said that 100 times!”

“Don’t close the door so hard, she might wake up.”

Open the handle softly as to never make a noise….

Walk on your tip toes, she might wake up.

“Put the shade down on her pram,  she can’t breathe with that wind in her face.”

Do I have to fix that stupid chair again, why don’t they use lock nuts?

And where the fuck is that new wheelchair,  it’s been 6 bloody months.

When’s the last time she had botox, why won’t they return our calls?

“Has gastro forgotten our appointment?” Again…

“Have you rung the physio?”

“Did you read that email?”

“Have you answered it?”


Where are her new AFOs,  she’ll need a new pair again by the time she gets these ones….

When are they going to remove that steel plate from her hip? He said maximum a year didn’t he?

“Did you order more meds?”
“No, did you?”

“Have we got enough food for next week in kindy?”
“What do they need?”

“Where are those hoses, didn’t you order them a week ago?”

“Just a minute Emma, I just have to…..”

Please sleep through the night Jennifer, I haven’t slept in days.

Wide awake at 3am, it’s night night time Jennifer, go back to sleep….

Where’s my coffee, shit is it cold again.!

“Did we have any breakfast this morning”
“I think so, can’t remember.”

“Where’s that report from our last rehab visit?”
“Did you file it away?”
“Where is it then?”
“Did we even get one?”
“Can’t remember….”

“In a second Emma, I just have to….”

“I’m tired.”
“Me too, I could sleep for a week.”
“Pffft, I could sleep for a month.”

Why is she scratching her ear again? Infection?

“Argh did you remember to cut her fingernails…..?”
“No, did you?”

“Her tooth is bleeding again.”
“Should we just pull it out?”
“You can, not me!”

“Can you take her tonight, I gotta work tommorrow…”
“So do I…..”
“I took her last night….”

“Ok Emma, I’m ready now.”

“Did you remember to change the water in the balloon in her PEG.”
“Oh shit nah haven’t done that…”

“When is that appointment this week?”

“Hurry up woman, we’re late!”

“Jesus Jennifer can you please stop complaining, we’re doing the best we can!!”

“Sleep now!! it’s 4am!”

“How long can we do this? ”
“I have no idea”

“When were you finished with her dinner?”
“Did you remember the extra water?”

“We need more meds, did you order them?”

“Are you coming on Tuesday?”
“To what?”

“Can you hold her a little, I need a break..”

“Can we take a mini holiday?”
“Yeah right, when do we have time for that??”


“Should we ask the doctors for pain relief?”
“I already have…”

“Should we ask for more respite care.?”
“They don’t have the capacity.”

“Should we ask for help?”
“Haven’t we asked enough?”

“How long can we do this?”
“I told you before, I don’t know.”

“Can I go now?”
“Can you stay a little longer?”

“I’m going to bed….”

“Can I sleep a little longer?”
“No, she’s already awake.”

“If you change her I’ll make breakfast.”

“Come on Jennifer, just one burp.”

“She threw up again.”
“I’ll get a towel.”
“Can you clean the floor?”

“Can I sit down for 5 minutes?”
“We don’t have time, we’re late again…”

“Can we just cancel that appointment?”
“No, we’re already overdue.”

“Can I sleep now.?”

“Sleep when it’s over!”

“It’s never over!”

“I know……”



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