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having experienced Alexa's passing at first
I thought I knew what to expect this time with Noah
but again nothing can prepare you nothing
can prepare you for that moment
because once they're gone then its final
as soon as they said brain damage and told us that it was irreversible I went blank
I went numb and I really heard
whispers in that room
but I remember I do remember asking
you know being a degenerative condition obviously is it a terminal one and they said yes
and I asked them what her prognosis was and they told me six months
and I remember just leaving that room
just absolutely it's an undescribable feeling
I was absolutely shattered and so was Matt and I cried and cried
for a good 45 minutes before I could walk back into her room
full of our family members waiting on
you know the results of this meeting
I didn't even know the word palliative care before I had Alexa
I learnt that it was a service that was provided to
the patient and the family
to help with the journey of end life
and to allow you to make the choices
you know you wish to make
for either your famliy member or they wish to make for themselves
and to have that support around you
and yeah it
I mean I couldn't have done what I did
in terms of pallitate Alexa at home and pallitate Noah in the hospital
without that team so it's basically
ah, a guide
to the journey of end of life
the nurses that were provided to us were
pretty much the same so they became quite
familiar with our situation and all our circumstances
and the well-being of the kids and how the kids
responded to meds what meds they were on
where we were at you know did they have a step backward so that was really good
because this
this team of nurses became you know my circle
my circle of support part of the family
they're caring for my pride and joy helping me care for my pride and
joy so they become this
team so we get the nurses we get doctors come to the home
we get over night respite we get
you know medication
when when needed no matter how urgent
it was just a wonderful service a wonderful experience in terms of
from a support point, never
I never felt alone Matt never felt alone we always felt
very supported and encouraged and
we knew that we won't walk, even though we were walking through it
alone because they are our children we knew that we had the support
of the professional team which showed
the compassion that was necessary at the time to help push us through that
yeah
and often I'm
it's perceived that I'm just so strong I struggle
everyday they're the last things I think about when I go to bed
and they're the first things I think about when I wake up but
They're
not here and I am and I need to make the most out of
my life and
I don't want their whole existence to be all about sadness
I just don't you know they fought too hard for that to even exist