Home has been a mish mash of stress and a comedy of errors, since Ivy’s discharge just over a week ago.
Our arrival home co- incided with the first day of school and a boy with tonsilitis.
It has been very full on right from the word go.
I’ve fallen in my usual heap.
The children have responded in their usual way, post long hospital stay.
AJ has terrible abandonment issues and so my first day home was filled with accusations and punishment
for leaving him.
Of course, he doesn’t know he is doing it and would flatly deny hurting me in any way
but he pushed all of my buttons within the first two hours and then came back for more.
It was not fun.
Immy and Maddy went into over compensating mode
and they’ve all spent alot of time vying for my attention.
There have been high end tantrums and fighting,
something I struggle with every time we return from an extended stay.
All understandable, I guess, given the circumstances we find ourselves in time and time again.
I mean, it is hard being continuously ripped apart from your family, no matter what angle you look at it.
Some days I think we are the most functional dysfunctionals on the face of this earth.
For the most part we stand united and I am so glad for that
but clearly things are not wonderful.
Gifts and parcels have been arriving for the girl and for Noah too
and I am so very grateful for our lovely friends -
our little random act of kindness team
but I know I will never be able to thank them enough
and I feel terrible for that.
There are friends who are going through terrible times and I have not been there for them.
I want to be
but most days I struggle with our own misadventures
and the guilt can be smothering.
Someone told me once that guilt was a useless emotion and I should rid myself of it.
The thing is,
sometimes, guilt is the only emotion I can have any kind of control over.
There have been choices to be made
and accidents to tend to - AJ was speared by a boys football boot which resulted in seven stitches and drinking his dinner through a straw,
there has been paperwork and other mundane things to wade through
and then there have been bigger things too.
The worst of it though
is that after all of that,
after the septic event,
after the infection
and the contradiction with the doctors’ differing opinions
and the extended stay so that we could be absolutely positive that we had saved the port
and the aftermath that comes with it,
after all of that
the stupid port is busted
and needs to be replaced.
Just shy of its first birthday, the rubber in the drum is eroded (partly from the continuous access but also because of the ethanol locks)
I’m on my forth day of very little sleep
we all are.
The pump constantly bleeting out it’s injustices every time it tries to push fluid into the site.
Access, de - access, re - access.
Bigger needles, smaller needles,more tape, less tape, swelling, trauma to the area.
Fluid bleeding into the tissue until her skin is white and hard.
Pain and tears and more pain.
Backed into a corner, we are.
Waiting for something to happen, something to give.
Waiting for the paediatrician,
waiting to see if the new access will work,
to avoid infection,
to keep the politics of the institution placated
hoping to find some way to avoid the hospital.
Again.
Last night, at about 3am
the girl, bleary eyed
told me she felt like an ambulance with the constant ‘nee - naw, nee - naw’ of the pump alarm
and I felt, once more, that I had let her down,
let everyone down.
Yes,
clearly, things are not wonderful.
