On the way home from the hospital on D-Day, after dropping Daddy back at work, Charlie slept in the car.
I kept looking at her in the rear view mirror to make sure she was still breathing.
My thoughts argued back and forth in time with the windscreen wipers:
This diagnosis changes everything!
(Charlie is still the person she was yesterday).
I’m going to have to bury my child, I know it.
(Don’t be ridiculous, the future isn’t certain for any one of us).
Charlie will never learn to tie her shoelaces. (Obscure, I know.)
I will never hear her tell me she loves me.
(Don’t be silly, woman, she shows you every day!)
Charlie will never read a book, or keep a diary.
(But you can still read to her and do all the voices.)
Charlie will never be an independent adult.
(But you will always be her mother, so she’s okay).
I am going to have to be much stronger to keep lifting her into bed and the bath.
(It wouldn’t kill you to go to the gym anyway).
What are we going to do about toilet training?
(Yeah, what ARE we going to do about that?)
Charlie will never sing along to her favourite songs.
(So? Lots of people don’t sing, and they still enjoy music. Charlie loves it).
… and so on.
We’ve had to have the hard conversations with grandparents and close friends.
I’ve been a giant wuss, using the telephone to do it or hiding behind the kids (thank goodness they’ve been home on Easter holidays) so that nobody can cry and there’s not much opportunity for discussion.
People say perfectly lovely, supportive things and I want to bite their heads off.
If they lament the disease with me, I want to leap to Charlie’s defence.
She can do anything; she’s more than a diagnosis!!
If they point out all the things that make us lucky, I want to bite their heads off.
You can’t possibly understand how awful this is!
It’s total verbal diarrhoea.
That way, no-one gets a chance to ask me how we’re doing, because I still don’t know how to answer that question.
I feel like a crazy person.
If this journey is a rollercoaster, we’re only at the first bend.
Hope I don’t puke.
Is your child a wheelchair user?