Tuesday, 30 June 2009
Monday, 29 June 2009
2. The cat is king.
3. There are no problems which cannot be made to appear less by the sight of two children doing things together.Although when the problem is the thought of nine long weeks with Little Fish at home all the time, the offer of a couple of respite nursing sessions helps quite a lot too!
Normal service may be resumed shortly.
So as Little Fish slumbered sweetly (a sight usually guaranteed to make Incandescent Woman fade from fierce fury to gentle glow), Mog and I walked up and down, rocked, stretched, and tried to find a comfortable position together. Even the diazepam only unknotted bits of her - but thankfully the unknotted bits were just enough to let her slip into sleep at last. And as we walked and rocked and sat and patted, and as I hummed and whispered and rocked some more, Incandescent Woman packed her bags and went to find someone with more energy.
And now it's morning, and our carer will be here in ten minutes; a blessed half an hour later than normal. Two girls sleeping sweetly, although as I write this Mog has just gone from sleep to gasping twisting arching seizure - not at all sweet really. Only time for one girl to be dressed before the school bus comes this morning; I'm thinking it's probably Little Fish's turn today.
Sunday, 28 June 2009
The competition - interpret what Little Fish was asking for for lunch today. Her request?
"Red Pish and Moany Cheese".
The prize? Take your pick - I'll recreate the dish she was requesting for you if you're local, for those living further away only the Red Pish is transportable. But I'll send some your way if you're interested.
Oh Sundays. A sermon on Zacchaeus, or rather on what we can learn from Jesus' response to Zacchaeus. A resolve to attempt to be more like Jesus when reacting to my girls and others. And then collect the girls from their morning groups, and attempt to park them whilst I queue for coffee. Little Fish gets stroppy and upset, so naturally I calmly return to her to reassure her that I will never leave nor forsake her and will be with her always, even to the end of the day. I'm sure that happened somewhere in some universe anyway. Meanwhile back on this earth I find myself leaning over her whispering "If you don't stop I won't be able to get any coffee and YOU WON'T GET A BISCUIT" in that particularly loving freeze-a-small-child-whilst-hopefully-no-one-else-sees-you-being-mean-to-the-poor-little-girl-in-the-wheelchair manner which I hope other parents know about. Small child gulps down her weeps and clings onto my hand begging me not to walk away. I take a deep breath and remember I'm supposed to be being patient and she is only small and fairly insecure still. And start again with the "let's be more like Jesus less like myself" resolve. Consider Jesus' response to money lenders in the Temple but suspect small child wanting to hold my hand and be loved is probably not sufficient justification for me to get away with throwing tables and shouting loudly. And breathe, and calm down, and watch the queue for coffee get ever longer. Think dark thoughts about how some of the other people in it could model Jesus to me and get me my own cup of coffee. Reflect that probably, if I asked one of them, they'd do just that. Prefer to stand steeped in an internal sulk, until I realise how stupid that is, notice that the queue has now vanished entirely, and finally grab my coffee and a biscuit for Little Fish. And she has food, and I have caffeine, and the world is the right shape again. Squash down thoughts of a 40 day fast.
Walk home wondering if that was the fastest ever broken resolution and thinking it's a good job forgiveness is eternal and unlimited. And Little Fish requests her Red Pish and Moany Cheese for lunch. I only have one of these to hand, and halfway through the preperation she decides this is not what she wants. She wants it hot, I heat it up and then she wants it cold. She wants something else entirely. Except she doesn't, and she does, and she just wants to scream. And the patient kind forgiving Tia who lasted for most of the walk home has disappeared, and Incandescent Woman is here again. And then suddenly Little Fish is in bed, in a nice cool bedroom, eating the food she was adamant she didn't want. And Mog is in bed, in a nice cool bedroom, stretching out and easing off her muscle spasms. And the world seems to be moving at a slower pace again. I'm off to down a long cold glass of water, and then we'll all start again. I don't like being Incandescent Woman; it burns me out.
Saturday, 27 June 2009
That's Sunday. For a long time now, that's been pretty much the sum total of the involvement between church and the shops; well, that and the mad midmorning dash for emergency milk and biscuits when stocks run low between the services, repeated midweek during the various toddler groups, prayer groups, and other church activities. Periodically on a Monday night girls all dressed in blue will run in to buy marshmallows or matches, boys in green might do the same thing on a Wednesday evening, and every so often small groups of non-church Youth tanked up on underage alcohol will shuffle from the shop forecourt to the churchyard and back again as they debate where to scribble their next piece of graffiti or which bench is better to vomit on.
A short while ago (or possibly a longer while ago; I'm not terribly observant about these things) a group from the church decided to embark on a "Healing in the Streets" mission. Saturday mornings, a time when the church is usually pretty quiet, a small group gather and base themselves in the shop carpark where they offer prayer ministry to any shopper who cares to ask for it. They seem to have had a fair bit of interest and support from the community, always good.
Whilst I've been vaguely aware this has been happening, I've not actually experienced it myself yet - Saturdays are traditionally the one day in the week where we don't have a carer come in in the mornings, so they are therefore by extension the one day in the week where I feel entirely justified in hanging about in pyjamas doing nothing very much. We have carers every morning at the moment as it takes two of us to get Little Fish dressed, so we're up and about somewhat earlier than might otherwise be expected. So far though we've been happy to either hang about at home doing a whole lot of nothing (and doing it well), or we've been away.
This morning our carer came, both girls were raring to go, and we decided to brave the 200yard dash to the shop to post a letter. It's not a difficult trip; one big road to cross with two exciting buttons to push to make the traffic stop for you*, one slightly awkward bit where the path narrows and too many sloping drives make for a wobbly push, but the rest of it is nice level tarmac without any sandwich boards, dustbins, parked bicycles or other pavement
Amazingly we managed to shut the door without incident (chasing Goway and his dead pet sparrow out ahead of us doesn't necessarily count as an incident; I didn't have to touch the bird so it doesn't count and I can pretend it never happened and that he's a sweet harmless fluffy thing). We walked down the path without being mugged or shot or even halted by people stopping immediately in front of us to remind us of our bravery. We pressed the button, the red man went away and the green man came, we shouted hurray (and by we, I mean Little Fish), and then we waved at the cars and shouted our thanks to them for stopping (and again, by we, I mean Little Fish). We went single file for the wobbly bit of the pavement without either child needing to go backwards, and then back into formation (two children in front, yours truly behind, one chair in either hand, for anyone reading who is presently thinking "I don't know how you do it").
And then it happened. Gradually we noticed soft and gentle music wafting through the air. And we saw two men staring at us with a strange gleam in their eyes. A kind, concerned, caring "must-be-gentle-and-polite-and-make-inane-joke-to-pretend-I-am-comfortable-with-the-fact-there-is-a-woman-pushing-two-children-in-wheelchairs-walking-towards-us" kind of a gleam. I'm used to that, what I'm not used to is the mild panic I noticed hovering about the edges of the kindly gleam. And then two women approached too, causing us a mild problem as the pavement is a little rutted here, and any stopping makes it inevitable that a wheel will get caught in a hole and our progress will be halted. Little Fish dropped the letter at this point, a car ran over it, and we paused to retrieve it, escaping the women with nothing more than a brief hello and acknowledgement of our mutual existence. Not, however, without hearing the "I don't know how she manages"/"however does she do it?" conversation which echoed in our wake. And then I realised what the panic was all about - underneath the casual concern was fear that we might be coming in for a spot of healing.
You're safe lads; the girls and I are not in search of healing just at the moment. Or at least, not from their disabilities anyway. I'll take all the prayer anyone feels inclined to give us that Little Fish's hip has knitted itself back together enough for her brace to come off and stay off on the 6th. I'll take plenty of prayer that Mog's seizures stay stable and that she can shake off a little of the sedating effect from her current drug cocktail. And if you feel inclined to pray for me then pray for my wrists and back, so that they stay strong enough to do everything we need them to do for the three of us. But just for now we'd like to post our letter and buy some bread, and that's all thanks. Apart from anything else; I'd be out of a job if we had too many miracles.
We went in, we bought our bread, we left the shop and dodged another huddle of marvellousers. Ruining the competent effect, we got wedged on a kerb and I tilted Little Fish nearly out of her chair as Mog giggled. Oh well, dignity never was anything I valued particularly highly.
And then we got home, and Little Fish got into a strop because Mog went into the house first. And she threw the shopping onto the ground. And then she poured macaroni onto the floor once inside, and then I realised her feed pump which had been unaccountably slow had reset itself to be running at 1ml/hour rather than 300. And then I discovered our cleaner has hidden our matches, so macaroni is definitely off the menu. And then I thought to myself "they're right, you know, I don't know how I do it".
*exciting when you are four. The thrill has palled somewhat for me these days
Friday, 26 June 2009
There were never such devoted sisters.
Never had to have a chaperone, no sir!
I'm here to keep my eye on her
Would those be my nylons you are wearing?
When the space was limited at a wedding venue
She had the buggy and I borrowed it too!
Those who've seen us
Know that not a thing could come between us
Just as well that no one tries to split us up
Cos no one can, no one can!
(with apologies to Irving Berlin and the Beverly Sisters)
Thursday, 25 June 2009
Thursday today; this should be my long day "off", the one day in the week when both girls are elsewhere for at least five hours. I already knew that wasn't going to happen; preschool have an all day outing which wasn't really great for Little Fish so today was a staying at home day.
Mog was a bit quiet this morning; nothing specific enough to keep her home from school but "not quite right" enough to keep me close to the phone. A worry which turned out to be justified as the call from school came; no fever, nothing specific, just quietly unhappy and uncomfortable.
So home she came, and onto her bed, where she's been ever since - not asleep, not fitting, not hot, just quiet, unresponsive, and copious quantities of foul smelling poo her only visible symptom. Not that helpful a symptom either; she's on Movicol so it happens fairly regularly.
I'd write it off to Movicol entirely if it weren't for the fact that as I cleaned up her third explosion of the afternoon I head the ominous phrase "I need a towel NOW" from Little Fish. Stupidly I ignored her plea, being up to the elbows in the drippy brown stuff, and walked back into the sitting room to find a nice neat tidal wave of vomit lapping at my toes.
I grab a towel from the bathroom and use it to mop the flood, feeling rather spectacularly bad for having ignored the "Oh please no water"s which had been shouted as I bolused her midday feed into her. Oops. A second towel reaches Little Fish just in time for her to catch the next retch herself, saving her brace for the moment at least.
Back to Mog who has taken advantage of her nappy free state to wee all over the bed.
Back to Little Fish who is now a fetching shade of puce, sweat pouring from her forehead. When the fever strip says 39, the tympanic thermometer says 38, and the under arm one says 36c, what do you do? I split the difference, give the paracetamol, which is promptly retched back, thankfully the orange version not the strawberry which might otherwise give false child-vomiting-fresh-blood-this-time concerns. I don't care about the invasiveness, I want the rectal version please.
Mop her fevered brow to the accompaniment of much "I NOT sicky, I NOT I don't like this" and a lesser mutter of "I want peanut butter and pâté and yoghurt in my mouth and apple pudding in my tubie". Suggest this possibly isn't the best plan at this precise moment in time, and grab a tissue to mop up the nose bleed caused by a combination of retching and temper.
Back to Mog to mop up again and try to cover the pressure mark. Chase the wheelchair service in the hope her new FoamKarve might be ready some time before the end of term. Get a standard noncommittal "her name's not on the list and no one is here to talk to you" until I mention the magic two words "Pressure Mark" at which point "can't help you please go away and be patient" turns into "I'll email the boss, I'll contact the company, I'll get them to call you back in the morning".
Realise my mother is arriving shortly to take Mog to Rainbows, but that Mog is in no fit state to get there. Attempt to tidy something beyond straightforwards vomit-mopping, but give up and begin blogging this instead.
Mop more vomit, wipe more poo, cancel our attendance at a proposed picnic tomorrow and pause to be thankful that the potential visitors we had for the Children's Food Festival are not coming down for the weekend.
And then I had a momentary breather, caught up with myself and reverted to the past tense. And then Little Fish started retching again, and a suspicious drip drip drip was heard from Mog's bedroom. And then Little Fish started flapping the towel I had been using to mop the floor.
And then my head exploded.
That is all.
Wednesday, 24 June 2009
It doesn't always work out, too often we get the Wolverine Kid instead, whirling about in a noisy destructive fury desperate for attention, too tired to settle and too early for bed. But today was one of her beautiful afternoons, and as I closed the door I heard "I would like the doll's house on the table please kind Mumma".
And she played gently, rearranging furniture, sitting dolls on the toilet, cooking a special dinner to make them grow
for at least an hour, until I took the photo and she realised I was watching and started whining for dinner and my phone and a cuggle and a teeny bit of pâté, and the peace subsided for a while. But let's concentrate on the happy shall we?
We really should; two minutes and a lot of hand kissing, and I disappeared to cook tea. As I walked out of the door a little voice piped up again "I'd like the big book there Mumma please".
And as I chopped onions in the kitchen, she "read" her bible stories to Mog.
Tuesday, 23 June 2009
Wanting to create outfits which weren't identical but went well together, looking for something suitable for a boy as well as two girls, wasn't easy.
We settled on this fabulous fabric. perfect for the Wahooligan and will be loved by Little Fish too. Mog's we decided needed toning down a little, but I left it to Trina to come up with the finer details.
And so she did. One girlie skirt and top with just a hint of crazy traffic around the edges for Mog.
One beautifully handsome very boyly outfit for the Wahooliganwhich is a little blurry in the photo, but since he's a little blurry in our lives at the moment it seems reasonably appropriate,
and one tomboy supercute outfit for the Little Fish in the middle.
They didn't quite arrive in time for our holiday with the Wahooligan, but then I'm not sure LF's will fit over her brace, so that was definitely just as well. We'll have to fix a time for them to meet and force them to tolerate many photos together. Joys of being the adults; you get to torture small children with matching outfits and photo shoots.
There is just one teeny tiny problem with the outfits. They came with matching hair clips. Three of them.
I'm just not sure which one is meant for the Wahooligan?
Thanks again, Trina; I know they'll be loved and appreciated. And whilst Jophie's Jungle Boutique isn't fully stocked right now, I do know Trina is always interested in doing special orders, Jophie's health permitting.
Monday, 22 June 2009
One four year old child, discovering the joys of an overhead hoist with buttons to take her from one end of the track to the other. One four year old child, left hanging over a toilet, discovered having escaped not just the toilet but the whole bathroom, now hovering over another child's bed. "Get back into the bathroom please" didn't seem an unusual request.
The response? "But I wanna poo in the boy's bed. Why I not poo in the boy's bed?" Really?
One woman pushing two children in wheelchairs. One woman pushing one boy in an excruciatingly awful to push wheelchair. One man pushing another boy in a large wheelchair. One crowded small town full of tourists and locals, all enjoying the sights.
One woman bravely breaking free from the crowd and crossing over to us. Ignoring the woman with the madly uncontrolled chair, and the woman with the wildly uncooperative tandem of chairs, she leaned in towards the man, brushed his arm, and told him how wonderful he was to be doing this.
We can only assume she thought the two women were inmates not fellow parents...
One hill farm, turned into a chocolate factory, visited on the wettest day this month. One hill farm with partial wheelchair access, including beautiful ramps carefully constructed under the duck pond. One shin height puddle between us and the chocolate.
Two very wet carers.
One small child, four days later, still wanting to know why she can't poo in the boy's bed.
One week, two families, three friends, four children, five jam doughnuts, six tubes of Pringles and seven good days. No photos from me because my hands were somewhat occupied, but a resounding audio memory built up of electronic singing beeping children's toys, Mog's music, Little Fish's "why why why?", the Wahooligan's Wahoos and a quieter child's "Hmm".
Next year we might make it into the water.
Sunday, 21 June 2009
The letter in the photo was waiting for us when we got home. 7.5 weeks rather than the 6 we were expecting (the appointment is to remove the brace), but I am less concerned with the delay than with the suggested time of admission. I realise the hospital has been putting on extra
clinics to reduce the waiting lists, but that does strike me as a little excessive.
Mind you since this is the hospital which booked us in for a clinic on the Tuesday and then phoned to say we'd missed it on the Monday, not once but three times so far, nothing really surprises me.
Saturday, 20 June 2009
"What you doing?" (Packing)
"What you doing?"
"What you doing?"
Tenby to St Clears
"Why that likle boy not coming home with us?"
"Why we not staying in the holiday house?"
"Where that other car gone?"
"Why they not coming in my car?"
"Why we going home?"
St Clears to Swansea
"I don't like this, stop driving, oh please stop the car, stop driving, oh Mumma Mumma I don't like this oh Mumma YOU DON'T LIKE ME oh please wait a minute stop this car don't drive it"
Pause in Swansea Services
Swansea to Bridgend
"Oh no stop stop stop driving I don't like it I don't like this oh please Mumma Mumma Mumma NOOOOOOOOOOOOOOOOOO no please don't drive oh don't go fast go slow go slow go slow stop stop stop this car please stop this car please oh where are the services stop this car please stop this car oh please oh please oh help me oh HELP oh NOOOOOOOO oh Mumma Mumma why we driving oh NO"
Pause at Bridgend Services
Bridgend to Cardiff
"WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH I dropped my Charlie and Lola I dropped my phone oh no I dropped my bag oh WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHH"
Pause at Cardiff. Point out huge massive very exciting Severn Bridge. Put music on very loudly. Mog's music which then, thanks to our flashy CD changer thingy in our new car, segued into Hillsong Kids Praise.
Cardiff to Bristol
"Jesus you're my super here, you're my star, my best friend"
And other thumping tracks, painful to drive to but marginally less painful than listening to a small child screaming. And giving me the opportunity to realise the lyrics to one song are "Though I am weak, You are strong, Your arms so big, they carry me" and not what I had heard them as previously "Though I am weak, You are strong, Your head so big, You can't be wrong" which whilst it does have the benefit of rhyming would be an odd phrase for a praise song, even a kids' praise song.
Bristol to Newbury. Il Divo, Norah Jones, Christy Moore.
"No I not like these I not like this it NOT Mog's turn I want Courtney Courtney oh please oh please oh please NOOOOOOOO"
Newbury to Abingdon. Matt Redman.
"Dum dee dum dee dum dee Blessed be Your Nay diddeeee Takeaway"
Abingdon to home
"Oh OH OH WE ARE HERE!!!! Let's get that cat right now Mumma oh please get Goway I need my boy what my likkle boy cat doing oh HERE he is Hello that cat oh HELLO HOUSE".
Home. Kettle on.
"What you doing?"
"What you doing?"
Friday, 19 June 2009
drinking coffee, wearing new clothes and opening presents. Little Fish
decided we needed to have a party; Seb and the Wahooligan needed to
dip their toes in the sea, and so a plan was born.
Up and out, which was modified to up and leave just about in time for
lunch at what LF persists in calling a dinner shop. A nice lunch, Mog
modelling new clothes and grinning mightily, and then a walk around
the town (preview for you, K, Harriet's House is in this photo),
before heading to the beach.
Having walked half a mile straight downhill, it was somewhat
distressing to have LF go on total strike on viewing the sand. Two
hands clamped on the wheels, whole body rigid, one very loud voice
begging me to stop and not go and turn around please please please,
and giggles from Mog.
So, leaving the boys to their paddle, the girls and I powered
ourselves back up the hill where after much "oh I don't know how you
do it" and many stares, we inserted ourselves into a cafe for more
cake and coffee.
Home again and a spot of packing before LF declared "Let's get this
party started". Three tired adults made a unilateral decision to make
it a pyjama party, and ten minutes later four pyjama's children were
coerced into a circle to blow out candles and refuse to eat a rather
tasty chocolate cake.
And now four little ones are in bed, the packing is as done as it can
be, and D has just turned up with our fish and chips. I can smell the
vinegar and the mound of chips is disappearing fast, so I must go and
enjoy it before it all goes.
Thursday, 18 June 2009
The nice thing about having a pool in our house is that we don't
really have to leave the house in order to feel that we've done
something with the day. The even nicer thing about it is that once
swum and showered, we can post children into pyjamas and job done.
This is however unfortunate when we vacate the pool at 3pm. And would
have been a disasterous plan altogether given the missing luggage had
we not already known what was inside Mog's mysterious birthday parcel
from Grannie and Grandad.
The downside to having a pool and pretty pyjamas is that the
temptation to do nothing else with the day can be overwhelming. We
have had several beautiful days and done nothing beyond a quick putter
into town for groceries and to admire the view.
Yesterday we decided to make the most of the holiday and actually go
out for the day. A nearby chocolate farm the destination, and had the
rain stopped even a little bit, and the puddles been even slightly
less than shin-deep it might have been a good day out. As it was, Mog
enjoyed the chocolate so despite being too wet to even think about
photos, it wasn't a total washout.
Today we thought that we ought perhaps to go to the seaside, given
that we are officially on a seaside holiday. We got up slowly, got
dressed, breakfasted, and had just about assembled everything
necessary for the short jaunt when the heavens opened and the pool
suddenly became the more attractive option.
Last day tomorrow. Will we declare another pyjama day or actually
achieve something? Answers on a postcard, please*.
*and if you could send those postcards to my relatives you'd save us a
job and I'm sure they'd be gratefully received. Thank you.
Wednesday, 17 June 2009
I'd have linked but the only videos I can find are troops of boy scouts and that's just not beautiful! So, if you know the quote you're now singing along (and hating me for not including the lyrics cos you're probably stuck on 8 or 9); if you don't then you won't have a clue what I'm talking about. So what's new?
One is the number of adults in this household. That comes as a surprise to some of the people who know me; even if they see me regularly a reasonable number assume there's a husband tucked away in the corner somewhere. There isn't. I'm not divorced, not hopelessly and bitterly disappointed (nor yet mildly and blandly disappointed), just single and generally happy to be so.
When I say this, people tell me I "mustn't give up hope". I'm not giving up hope; marriage is just not something I particularly hope for. I hope for children, and for a long time I assumed I'd have to be married in order for that to be a possibility. I hope for family - and I have that. Growing up I always wanted a sister, and now I have two, through my brothers' marriages.
My Great Aunt who died recently was single; as far as I know she was single her whole life. I don't think her singleness defined her life though, and I'm absolutely certain it didn't limit it. And yet, at her funeral, two of her friends attempted to comfort me, not for the loss of my Great Aunt, but for my single status.
I'm not anti-marriage; I'm certainly not anti-men. I am however pretty convinced that marriage is a calling, and that a marriage takes a fair amount of work to keep in good condition. That's energy I put into my children, into the rest of my life, into this blog for that matter. Which, again, isn't to suggest the marrieds amongst you have less energy for all of those things!
And of course, although I might not have a husband, might not have
Tuesday, 16 June 2009
day stage of life, swimming is not an option for her. I suppose more
selfless families would sacrifice all their swimming, ignore the
poolhouse keys, and find something else to do with their holidays.
Being us, we decided to go anyway.
I had many diversions planned to distract Little Fish, we had
emergency back up plans to swim in shifts, and lots of compensatory
schemes to console her.
And Little Fish has confounded us all. "I be the lifeguard, Mummy, you
swim, I throw the ball.". And so she did. Not a complaint, not a
grumble, no hint of being left out. Not bad for a four year old.
Two girls on holiday, sharing a bedroom, and upstairs, two boys on holiday, also sharing a room (unless we've had a major rearranging of furniture to accommodate one child's need to sleep over another child's need to be loud in the night). Two families hopefully enjoying a peaceful week, two years after our first attempt at holidaying together. And two months until we do it all over again, but this time with rather a lot of other families in slightly less luxurious surroundings, camping out for the Special Kids in the UK fun day.
Monday, 15 June 2009
anywhere in the house. The curse of an open plan house is that you can
hear everything from anywhere in the house.
With four somewhat wonky children who have reasonably early nights, it
is nice to be able to sit in the sitting room knowing we will hear any
of the younger generation should they have a seizure or fall out of
bed, stop breathing or do any of the other irritating things small
wonky children manage. On the other hand, it is somewhat less helpful
to be able to hear everything from each of the bedrooms.
Last night we went to bed. The noise of this woke Mog. Her screams
helped another child to have a major seizure, and the rest of the
night was spent alternating apnoea and seizure alarms, dosing
different children with painkillers, sedatives, seizure rescue meds,
debating midnight ambulance calls (for once not for one of my girls),
swapping beds and generally causing much mayhem until finally the
worst offender settled at 5, just in time for the least disturbed
child to wake up for the day.
Today four children are well, happy, giggly and busy. And three adults
are discovering there is no coffee strong enough. Oh, and this photo
has nothing to do with any of that and everything to do with how cute
small girls look when they have new matching outfits courtesy of a
very limited choice in the cheap shop. Mog is distinctly underwhelmed.
And now the three of us
We've been three for a long time. Goldie and Mog and I, and now Little Fish and Mog and myself. Three works; two children and myself and I've a hand for each chair, an arm for each cuddle, a knee for each to rock on. When Little Fish first moved in, Mog was unimpressed with the idea of a new little sister, someone smaller and therefore potentially cuter and definitely getting a lot of attention. Little Fish meanwhile was small and sad and unsure about this new family which didn't have the bouncing boys she was used to. I used to sit with one girl on each knee, each facing away from the other, and lean down to sing in two ears at once, three heads in a row and all gaining comfort from each other.
It didn't take long; Little Fish took to the others and even before she had a wheelchair of her own, long before she could talk, she was demanding to be put down between Mog and Goldie, wanting to feed Mog and to tickle Goldie, needing to help read stories and generally be needed. The three girls were together here for around six months, if we count the introductory period. Mog and Goldie sisters already; they made space in their relationship for this new little person, sometimes laughing at her antics, sometimes annoyed, but soon noticing her presence and welcoming it. And Little Fish took to her sisters too, wanting the three girls to be together whenever possible. When Goldie moved out, Little Fish fretted to see her just as much as Mog did, and now nearly two years later she still talks about Goldie, still remembers her.
Three children and two hands is interesting; whether it's my three girls, or the two girls and the Wahooligan, or any other child who might turn up. Life gets interesting, which is just as we like it, but it definitely gets more complicated too. I'll stick with the three of us for now.
Although I would just like to point out that our new bus has space for three wheelchairs, thus neatly removing one of the bigger complexities of having three children. That spare slot surely won't be unused forever...
Sunday, 14 June 2009
Four weeks without a bath, including one with an unidentified puking lurgy. She's interesting to get near. This is going to be hard on her this week, staying as we are in a house with a hydrotherapy pool attached. I tried to persuade the surgeon that an early brace removal might be an option but he was not convinced.
Four months is how old the Wahooligan was the first time he came to stay with us. His story is not mine to tell, but I am sure no one would mind me mentioning he was utterly scrumptious. Fresh from hospital (and back in four days later, and out four days after that, home for a week and then back in again; we all celebrated when he finally managed a month without an overnight stay.
Four weeks is how long the introductions took for Goldie and I; four long weeks where I was fostering another child during the week, having Goldie for the weekends, and visiting her at school midweek when my own fosling was in nursery at the other end of the county. Four hours a day was how long I spent in the car that month. Exhausting and totally worth it. And, at the other end of our journey together, four nights is how long it took her to die after her accident.
Happier things - four friends on holiday with us this time, two adults and two children. Which means we are currently on holiday with four children in four wheelchairs. Four bedrooms in this property (four beds in my bedroom!), four bathrooms too, and if I'm counting them then it's possible I'm looking for four things to make my list complete.
Saturday, 13 June 2009
Little Fish's clothes, Mog's clothes, inco sheets, all our swimming
things, and the one irreplaceable- Little Fish's catheters.
But with views like this from our sitting room window, do we really
Five years ago we took our first holiday with the Harriet Davis Trust. Goldie, Mog and I, and two friends with their children. We've been back twice since; once with Goldie and once with Little Fish, and always Mog and I. Sometimes with friends, sometimes with family; there is something about Tenby itself which draws us back. Unchanging; my Grandmother came with us two years ago and felt it was unchanged since her honeymoon, close to seventy years ago.
Bosherston Lily pools for keen Chalet School fans, unmapped military bits for those who like to live dangerously, castles and mills and hermit chapels for the historians, monks who make fudge for the religious foodies. Indoor fairgrounds for the weather-challenged.
And ceramic cafes for those who like to bring back something other than sticks of rock and pockets of sand.
Five loads of washing waiting to be packed into cases, five million (approximate estimate) bottles of medications and packs of disposable feed supplies waiting to be squeezed into cases, and five times so far I have gone back into Little Fish to explain to her that yes we are going to the "Olly day owse" but not until we have all had a good night's sleep!*
*posting this in advance; I haven't really got my timelines muddled.
Friday, 12 June 2009
I've watched this little girl since she joined the girls' nursery school, watched her change and grow, watched in amazement as she developed the ability to hold and shake toys, melted at the sight of her beautiful ear to ear grin, smiled as she fussed and fretted when ignored and then grinned and giggled once firmly back at the centre of things.
A little girl, not that dissimilar to Mog last year and the year before, but somehow changing and building her physical abilities, starting out in the same wheelchair Mog had and managing to injure herself in just exactly the same way, wrapping her arms around the bars and trapping her head and being a gorgeous blonde mini-Mog in many ways. But learning to control her arms and hands and loosening up where Mog has stiffened. Making exciting progress; infinitesimal perhaps for those not familiar with our world, but whole feet for those of us used to measuring inchstones not milestones.
This morning that little girl lost her battle with an infection and now that smile will never light up a room again. She made it to her fifth birthday, she had her big party and was the princess for her day. And the future was suddenly looking like a possibility. And now it isn't any more. Please pray for her family.
Thursday, 11 June 2009
so much better when she loses her brace. I gathered up her school bag,
packed her a lunch, and pushed her not to preschool but in the
opposite direction, to the school she calls alternately Big School and
Dubbledore, neither quite right but they'll do.
I pushed her into the classroom amidst stares from parents and
classmates alike, and then we hovered in the middle of the room,
unable to reach the carpet or the tables, she marooned in her huge
post-op wheelchair, me wanting to grab her and run for the safety of
Amongst the melée of parents and distraught excited children, she held
my hands and pulled me down. "Kiss me, Mummy. Bye bye, you pick me up
later you go now". Something tells me she'll be just fine.
I hope so. The parent pack I received last night informs me I need to
provide her with uniform, a book bag, PE kit and bag, all with school
logo on. Pricey but doable. Black shoes and Welly Boots in a string
bag, both trickier for my square footed child but not impossible. And
a double sided sheet for her to fill in by herself, with a space for
her to write her name (nope), draw a picture of her house (also not
going to happen), and a list of things for her to colour if she can do
them herself- put on socks, tie laces, go to the toilet, cut up food,
manage zips and buttons and a host of other independent skills. It's
going to be a very blank sheet.
Wednesday, 10 June 2009
This child has eaten barely half a slice of bread at a time since she took ill last Wednesday. I think it's safe to say her self-imposed famine is over!
Mog meanwhile is up to her monkey tricks again...Cotswold Wildlife Park today with school thanks to the Rotary Club. Mog decided to smuggle one of the rarer breeds home with her. And all that being pushed around clearly gave Little Fish an appetite. Next time we might try to see a few more of the animals.
Home and hungry, and LF requested pizza. Dominos obliged, and we have both pigged ourselves into a stupour. Which would be perfect, setting us all up for a solid night's sleep. Except that I've just checked my diary, and tonight I have to be at Little Fish's new school for a parents' evening. Meet the teachers, hope to find some other parents, begin to get my head around a new venture for me; mainstream school.
Pass the coffee
Tuesday, 9 June 2009
I haven't many flowers*And I haven't cut the grass.
But now I'm going to dig and plant
And soon I'll have a show
With a bit of sun and a bit of rain I'll have a lovely showOne potato, two potatoes, three potatoes, four,
Five potatoes, six potatoes, seven potatoes, more;
One potato, two potatoes, three potatoes, four
Five potatoes, six potatoes, seven potatoes, more!
Which is great and marvellous and wonderful, but where do I put the compost in the meantime?
*but the ones I do have are jolly pretty, don't you think?
Monday, 8 June 2009
is that it enables her to reach the floor. She drops something, she picks it up. Doesn't matter whether it's accidental or deliberate; if something she needs is on the floor then she can fetch it for herself just like any other child her age .
And now Little Fish is in her Larger Chair
and her fingers finish a good 18" off the floor. And she's good and cross about much of life. And is swiping everything off the tables, out of drawers and cupboards and off work surfaces. Frustration at being immobile and 75 puzzle pieces are scattered across the floor. Fury if I spend time with Mog, and three plates, a jug of gravy, and a handful of dirty cutlery is flung to the far corners of the room. Anger at her inability to turn corners without help, and the DVD player goes flying. Hair bands are pulled out (hers and Mog's), cat food is shaken out, toys are shattered and drinks are puddled.
And I'm at a loss. I get that she's cross, bored, out of sorts, unhappy. That doesn't give her a free pass though. She's fine (mostly!) when we have company, delightful when we go other places. This tells me she has this under control; it's a choice not a compulsion. So normally I'd pass her a cloth to mop with or a bag to sort with. I can't even put her down on the floor to pick up the pieces; on her back she's immobile and on her front she's too mobile for this stage of healing. All I can do at the moment (except save on lighting bills by becoming incandescent with fury myself) is ignore her totally and obviously whilst I clean things up myself. "Throw it and you lose it" is all very well but now she's banging her head against her wheelchair, hitting herself with a fork (having already flung the spaghetti), and absolutely beside herself.
So I pick her up and hold her to me, we snuggle together as she grinds her bony head into my collarbone and storms out her fury. And then she screams until she is sick, and then she wants cuddles, and then two minutes later it all starts again, and all because I have stood up for two minutes to do something other than be the sole focus of her attention.
I get loud; she gets louder.
I get quiet, she stays loud.
I ignore her, she escalates; unstrapping herself and trying to throw herself out of her wheelchair or else undoing the straps of her brace and trying to remove it.
I hold her, she bruises me.
I stay calm, she weeps buckets.
I get angry, she weeps buckets.
She wants the Wahooligan's toys, she wants to throw the Wahooligan's toys. She wants my phone, she wants to throw my phone. She wants food, she wants to throw it and crumble it and smear it across her face and up her arms. She wants paints and pens and pencils, she covers her arms and her face and her clothing and ignores the paper. She wants to watch DVDs, she wants to bend and snap the DVDs.
This had better end when her brace comes off.
I have no idea when that will be; I phoned the surgeon's secretary last week and she told me it definitely won't be just six weeks, might be seven weeks or possibly eight, she has a date in mind but can't be certain yet so won't pass it on. I did mention I really need to know, especially if it involves another overnight stay, which it may, but she was unable to even hint. At this rate I might just take the brace off myself and take our chances. At least without it I could sling her in a bath and let her take her rage out slapping water against the walls and sending bubbles flying across the room.
I am so weary of the "I wanna be in the playroom in the sitting room in the playroom in the sitting room you push me I DO IT you doit IdoityoudoitIdoitwaaaaaaaaAAAAAAAAAHHHHH".
Still, she's eating again, she isn't sick despite her best efforts (earlier this afternoon "I wanna sucky Mumma [muslin rag]" Oh - you want to suck it? "No I wanna sicky on it". She tried but failed).
We have carers here for her twice a day at the moment; much needed, much appreciated. But mostly convinced, I am sure, that I am far too strict. We have had another 48 hours in hospital, another 2 days when every lip wobble has been met with new toys and cuddles and comforts, and where I have been the evil one for daring to brush hair or suggest that necessary treatments will have to go ahead whether or not she actually enjoys them at the time. And the changes in routine mean we are back to hypervigilance, back to "what you doin? Why? what you doin?", back to not being able to focus on anything without knowing exactly where I am and why ever moment of the day, needing a run down on anything I might have done without her and a big worry about anything I might be about to do which doesn't include her, back to one eye following me at all times, one ear listening out even in her sleep.
And so I hold her, but she is heavy and awkward in her brace, and wants instead to sit in her chair and hang off the corner of my tshirt, one hand tangled in my clothes always and one giant wheelchair dragging behind me wherever I go. And rages when she can't.
It gets better, right?
Saturday, 6 June 2009
Little Fish wakes up each morning bright eyed and bushy tailed, raring to go, and wolfs down a slice of toast. She'll take a water bolus no problem, and whizz around in her chair for a while. As the morning goes on she gets a bit tireder, until by lunch time she's definitely droopy. She'll ask for lunch but only nibble at it, eat the bare minimum then forget she's got the rest. And fuss if anything is put through her tube. Then, just as I am planning something nice for tea, she will throw up everything she's eaten for lunch and be fairly miserable until bedtime.
I've tried more water and less water. She's had a drip at hospital and a slow dioralyte feed at home. It helps in that she's producing urine and not puking coffee grounds, but she's still gagging and retching by about 3PM, bringing back her undigested lunch and not wanting anything for tea. She throws a fever at bedtime which comes down as quickly as it goes up, whether or not she has calpol (just throws it up if we give it, so we don't).
She's eaten half a roll today. A slice of toast yesterday. A yoghurt the day before. And a piece of bread the day before that. Hospital say her bloods and urine tests are "within normal levels", she's showing no signs of infection, not dehydrated any more, nothing is showing up as a problem anywhere.
So I'm stumped - it doesn't feel like a lurgy to me, but if it isn't, what is it?
- being woken up in the middle of the night, not by alarms or by nurses taking neuro obs, but by a little girl needing a bit of music to disguise the noise of the rain hammering down on her window.
- stumbling back to my own, beautifully comfortable, bed and listening to the rain knowing that I don't have to be out in it, and that I have another seven hours at least to sleep.
- waking up in the morning with all three of us back here under one roof
- a warm bath and clean clothes
- having two carers turn up unexpectedly instead of one, and having one of them fix the garage lock, cart boxes of supplies out of the house into the garage, and then get Mog up as well as helping with Little Fish
- heating which works, and which kicks on for the coldest day for a while without needing any prodding or poking at all
- Brioche pudding for breakfast with fresh hot coffee, a meal I have cooked for myself and a hot drink I can hold in my hand whilst sitting with the girls, trusting myself not to spill it.
- A day with no timetable, just for us to to as we wish.
Friday, 5 June 2009
When Mog was a baby we went to nursery to join in with their swimming sessions, stool sitting group, and "Atmospherics" - a beautifully relaxing session involving being gently wafted with scented scarves. Lovely.Once she was old enough, she started going to the nursery without me, riding on the school bus with her big sister. And having a wonderful time, and working incredibly hardAnd coming home utterly worn out and ready for bed(Picture from the afternoon after her first morning at nursery)
Kingfisher nursery has had my girls when they have been bouncing with health and when they've been finding life rather more difficult.We've had Nativity playsAnd Nativity playsand Nativity plays!Swimming lessonsand therapy sessionsWith teachersand therapists
When Mog had a little sister of her ownShe was welcomedAnd, when she was old enough, she rode the bus to nursery with her big sister.
(although we did give her a seat of her own).
And then Mog got big, and moved up to the next class.And now, suddenly, Little Fish has grown bigAnd these are suddenly her last few weeks in nursery too. And from September, she will be at a different school entirely. And although Mog will still be at the school, the nursery will not be a part of our life.
It'll be a big change. Parents are very much a part of life at nursery. Coffee mornings, swimming sessions, outings; all this will go. Not only that, but for the first time since Mog moved in six years ago, I will have no one at home with me during the school day. Big change indeed.