For two hours?
And love it, and not drop her head once?
Surely it must be harder to hold your head up when prone than when upright?
Tea at three is one of this year's Helen House fundraisers. Throw a
tea party, invite friends, charge them. Simple enough - everyone gets
cake and a drink, and Helen House get a bit more money towards the
cost of our care.
Hospice care is not funded by the NHS or by Social Services; Nor do
the patients' families pay. Every penny comes from donations. We're
staying here now to give Little Fish a break from being in hospital,
and so that I can recharge my own batteries before jumping back into
our daily life with LFs additional needs. Mog has been here for a
week; this hospice is the only place where I can feel confident enough
to leave her overnight, knowing that the staff recognize and can cope
with all her special needs.
That's this stay. Helen House have taken care of my girls so I can do
things by myself at times. They have taken one child so I can focus on
the other. When Goldie died they took us all for a couple of days, a
pause before taking up the reins again, a chance to breathe with chaos
all around us. And if and when the time comes, I know they will
support us through the death of one of my remaining girls.
Helen House do more than just care. As I left the house this evening
to come over to my flat, I paused to watch a child have a late night
spa. Yesterday one child had a private movie screening whilst another
couple enjoyed their favourite meals. Croquet today; another day
aromatherapy and music therapy fill the corridors with a gently
relaxing multisensory feast.
For myself, this is a chance to enjoy just being Mummy, not having to
be nurse and carer and therapist. Medicines and feeds are brought in
and administered, treatments are carried out, and I can be elsewhere
entirely if I wish, or present but off duty. Tonight Mog is hooked up
to a sleep study; if this had taken place in hospital I would have had
to spend the night by her side. As it is, I have said goodnight to
her, and l have crossed over the road to my flat. I can reach the
girls in seconds if necessary, but I can be confident that they are in
safe hands, cared for and loved whilst I sleep.
One more quiet day tomorrow and then time to step back into reality. I
love this life we have together, but there's no denying it can be
difficult at times. Knowing that we can book ourselves another break
here in a few months' time makes it that much easier to pick up those
extra roles again.
Little Fish has a uti, Mog has a sore still, but I think they were
pleased to see each other. Decent sensible staff on duty who took over
calmly and competently, leaving me to take a bath and do some washing.
Now the girls are snuggled up in the main house, and I am over the
road savoyring the peace and the luxury of a room to myself.
Meanwhile we are on the move to the ward next door. Except we might
not be. And then we definitely are, and so I pack our lives into our
bags. And now we aren't again as someone from picu has moved instead.
Except we may move at bedtime. Not wonderful for a child who wants to
know exactly what's happening all the time, but hey ho.
LF continues to run a temperature, although her bloods have come back
clear. She's possibly having a problem with her wee but hopefully a
blip rather than an issue. Her biggest stress this morning was not the
cathing, not the rolling, not the cleaning and washing and forced
removal of the manky upsy daisy pyjama top she's been welded to since
Friday, not even the missing breakfast (although that came a close
second), but the evil hairbrushing torture. If that's the worst thing
we've done to her in the past few days I think she's not that badly
done by! Sadly she did indeed scream herself sick so has now lost the
toast she sobbed so hard for earlier...
Little Fish had a nap earlier, and so I slipped downstairs in search
of coffee. I bought her a magazine at the same time, and came back to
give her a present. "Why you got me a present, Mummy? It my Birthday?"
I explained that it was a present for being so patient and helping the
doctors even when they were doing things she didn't like. "Oh sank you
werry much Mumma".
And then I sat back feeling smugly pleased that I have raised a child
who does not expect constant presents and who wouldn't dream of using
a mere hospital stay to wheedle gifts from her guilty mother. Alas, my
smugness lasted approximately 87 minute 34 seconds. "I finished this
one now you got another present for me Mumma I big brave girl for
you." Ah well, it was fun while it lasted.
And then hustle hustle magic cream and consultations, a quick go with
some playdough before wrestling a small child to sleep.
And now 4 hours later she's not in pain, she's eaten a bowl of cheese
and had a cup of water, she's watching her video and her greatest
annoyance is the fact that people keep interrupting her to check she
really really isn't in any pain. I guess there are times when being
naturally anaesthetic really does pay off!
Surgery all went well. She needed blood and may need more tomorrow but
she is so far amazing everyone with her general wellness.
Picture is 1 hour post op!
For those who can't read it, they are directions to tilt your head
sideways in order to read a number sideways. Which leads me to wonder
how many people phoned the company complaining about the strange
unrecogniseable numbers before the instructions were added. And then
to worry that I should perhaps put a "caution, water may be hot"
notice on my kettle. And then I wonder whether that is any worse than
the "caution: may cause drowsiness" warning on Mog's sedative.
I had a great long post but Internet has died again so you're stuck
with this snippet. Just call me Wonko.*
*points for reference. But points do not, in this instance, mean prizes.
Cleaner due at 9; visitors expected at 10. Perfect timing; Little Fish
goes to school at 8.30 and not even I can destroy the clean factor in
that time. And then the cleaner was late, the visitors weren't, and it
all went downhill from there really.
An appointment at 3.15 at Little Fish's new school meant collecting
Mog from school at 2.30 to avoid the buses. This meant loading LF and
the Wahooligan into our own bus together with all LF's equipment and
leaving the house by 2.25. This was delayed somewhat by the
Wahooligan's extended nap.
I was in Mog's classroom by twenty to three and then back to the bus.
All LF's equipment meant no space for Mog to travel in her wheelchair.
And a nice gust of wind plus judgement error had me swinging Mog not
into the bus but into the door. And knocking her tooth out.
Marvellous. So as I knelt on the ramp tipping her upside down and
trying to excavate the tooth from her mouth before she inhaled it I
was joined by the school secretary, the escort from the girls' bus,
and the class teacher and assistant. I do love an audience when I make
an idiot of myself.
One tooth neatly deposited on the ramp and lots of blood dripping down
Mog's front and my jeans. Many many staff placated and offers of
ambulances gently declined, I eventually manage to get Mog (who seems
to be totally unfazed by it all) into a carseat, and then load the
wheelchair up behind her. This is not helped by the several staff keen
to explain exactly why it won't fit. Eventually it does, and I close
the van door. Only to find it sticking on the handle of the wheelchair
which for some reason has been tightened up so much we can't release
it to fold it down.
We left the chair at school. This means I will have to drive her to
school myself tomorrow rather than have her go by bus, but since we
are in anyway for a wheelchair clinic this is not necessarily
Rethinking my initial plan to carry Mog throughout the visit, I make a
quick trip home to pick up her folding buggy. This upsets Little Fish,
who throws a face slapping hair pulling head banging tantrum of the
kind no one else ever sees. Happily this has the side effect of making
the other two laugh, so we finally arrive at school with at least half
the occupants of the car in a good mood.
School is of course full of parents waiting to collect children. There
is one disabled parking space right by the entrance, but policy
dictates the gates are locked (not much point in the parking space
really then is there?) so we park at the end of the drive and unload 3
children and 4 wheelchairs.
One of the many people joining us for this meeting has handily parked
next to us, so she carries LF's manual chair, LF drives herself, and
I, still covered in Mog's blood, do a push me pull you shuffle with
Mog and the Wahooligan. In this manner we walk past every single
parent of every child in the school. It's good to make an entrance.
We then comprehensively prove you can't fit two large special needs
buggies plus one powerchair into most places in a primary school. We
male plans to tear down walls in toilets and move sinks, we discuss
ramps and tables and lunches and other issues of accessibility. It is
unlikely this will be sorted by September so we discuss interim
And then we do the whole process in reverse and limp home soggily.
Where my attempts to research stuff and offload onto the world at
large are met by a big fat silence as my Internet connection appears
to be totally absent.
This post brought to you by my phone. And then the battery died
without warning. And now I want to know what I've done to destroy my
communication with the wider world.