Dear Alex, this week....
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| Dog walk round the Centre.... |
September 1st
2012
Dear Alex,
Dark night sky
resounds overhead as I travel back from seeing you tonight. The moon, yellow,
large, hides behind dark and lighter shades of grey cloud. Their linear
patterns covering the glow of the moon. Behind the clouds, there’s light,
there’s depth illuminating the moon’s yellow light, vibrant, peaceful and
strong.
As I pull up at home,
the moon is there, in all it’s splendour, round, yellow, light and brilliant.
Finally seeing the earth it looks down upon, shrouded no more and unveiled and
wonderful…
This has been a dark
week. An unresponsive one from your part, leaving me wondering where my Alex
is. A few words you have spoken, tears you have shed, the kids have been in
regularly and have enjoyed playing game around you, and we celebrated Esmie’s 4th
birthday with you on Monday.
Your progress seems
not as it used to be, they spoke of your posture being better, in 6 weeks of
therapy, this was all the positive they had for us.
It’s clear that your
short term memory is so affected, not remembering one day to the next what year
we’re in, your orientation is a battle, as you cannot retain the information.
You wake night, you get scared in the day, suddenly shouting, as you have no
idea where you are or why you are there, and you realise now you have no
sight…you cannot see me and you want to, I made this out tonight as you spoke a
fair bit to me alone, just you and me tonight.
We both wonder how
we’re doing this, how it came to this? How could we go another day without each
other? The time you feel safe is the time I am there with you. The time I feel
OK is when I am there with you…
And all these brick
walls that have built up this week, for 48 hours I just lost it, in grief, in
the impossibility of it all, the responsibility, my hands tied.
The next place you
will go is Milton Keynes-such a distance from me, and not at all ideal for you
or for the kids to visit…how can this have happened? The place in Aylebury you
were supposed to be going has no beds, and won’t have for a very long while.
I know if you were at
home, based in our house (which is not possible, it’s totally unadapted) but
pie in the sky, we had the right house, you could be based at home and go daily
to your therapies, at least I would feel you would be safe, although you’d
still wake often not knowing what’s going on, at least the kids voices, the
home environment, me to be there to talk to, you’d feel safe, not somewhere
where you can’t communicate what the problem is…left to try and work out the
nightmare, as good as the nurses are there, they do try and orientate you, but
they’re not family, and I feel so strongly you’d benefit from the home
environment being your base-but it’s not possible-we don’t have the right
house…
So the week, amongst
many other things that come up, has brought me to my knees.
I wake up today,
knowing I have to be alright and strong for the kids, and I put Stevie Wonder
on at breakfast time as we dance around getting the cereal and bowls out…’When you feel your life's too hard, you gotta have a with talk God’…Stevie’s words. And so I took Stevie’s
advice. I told the Most High that this is too much for a human being to deal
with, how can i? it’s impossible…and I have been scared, no, terrified this
week for our future, for you not getting the right care you so desperately
need, and I tell Him all this, and try and find the quiet in the whirlwind. The
quiet being the smiles on my kids faces as I take them for a bike ride, the joy
that I am able to do this for them. The dog joining us, loving just being with
his family. The quiet I try and find in the many joyful moments in the day-a
cuddle from the kids, a ‘can I help you set the table, mum?’…and from the
people who have not left my side this week helping me deal and arranging things
for me-the car gets temporarily fixed by a lovely, kind mechanic who just did
it as a favour…how does that come about???!
I look at the
positives asides the bleak darkness that seems to be hovering over our future
at the moment, and I ask the Most High for his strength, that I trust, that he
makes a path where no path yet exists…
Alex, your cuddles,
your smiles tonight, the time we spent together listening to music, laughing,
me chatting to you, your occasional responses…was bliss.
There’s my joy, right
there, that despite all this, one thing unchanged is our love we still have for
each other, stronger than ever-if that was even possible…
Thank you for smiling
as I left, saying ‘I love you’ I will treasure this tonight as I lie in our bed
with out you, again…
I love you Alex, so
bloody much, we’ll find a way, somehow, I have no idea how, but I trust
something will come up…
Me xxxxxxxxxxxxxxxxxx
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