This year has been long
culminating in the height of awfulness over the last three weeks
and especially yesterday where I was made to give Ivy an infusion in the hospital
while the nurses all watched.
They saw everything -
including my holding Ivy down to stick the small orange butterfly needle into her belly
and the intense pain that she feels
and then a most horrendous rigor episode (the forth in two weeks)
that I hope will fade from my nightmares eventually
and today I lost my cool with the new doctor
because she wanted to take away the subcutaneous immunoglobulin,
sending us back to intravenous and all of its problems and issues
and in turn
take any semblance of control I thought I had away too
and then I turned on the one nurse that cares about me as well.
I’ve tried to stay positive here
but the truth is I am a wrecked mess.
A hollowed out husk of the person I was
even just twelve months ago.
I want to talk about it all, hash it out here
but in the same breath I don’t.
I’ve argued more than I’ve ever wanted to -
ever imagined I would need to with medical professionals
watched Ivy go through too much surgery
watched my family fall apart
and never felt more alone.
Most of the time Ivy is confused which place is home
and which is hospital.
It seems the two have blended together somehow.
I feel as though I have lost any control I thought that I had at home
and in the care of my daughter.
I’ve thought about giving in,
giving Ivy to somebody who could look after her better than I could
and tonight I still wonder whether I am cut out to be her mum.
and fought this year
and now I have no more fight left in me
and so this Christmas (if I even manage to pull together something that remotely resembles a celebration)
I want nothing more than to be at rest
and for all of us -
Ivy too (because we came home today from the hospital – discharged)
to find a little peace in the season.