Back to normal

Or whatever passes for normal in this house anyway. Every so often the vastness of the wrongness of the abnormality of our lives strikes me with a large sledgehammer. Every night I hook my youngest child up to a ventilator, without which she may die in her sleep. Every night it is a piece of machinery, electronic wizardry, which keeps her alive. And somehow this has become normal; so normal that when I thought I might be heading to hospital with Mog last week on holiday the only thing I thought to show my friend was how to turn the ventilator off - I completely forgot to think about how freakish the whole "child on a vent" thing would be to someone not us. The first time I saw the machinery and the mask it was all hooked up to a Resusci Anne baby doll. A fairly freakish piece of equipment in the first place. Slap a breathing mask with elephant hosing over the top and suddenly it's an alien pod baby - and this is the child I would be adopting. I'm over it now; it's a piece of kit which helps her (and occasionally marks and bruises her face), and so it's welcome in our lives. But just now and again I hook her up

and I see it all with fresh, freaked, eyes once again.

And then I turn from her and post my middle child into her armchair, to settle her for sleep. It is soul-satisfying to have a six year old who settles herself to sleep with the aid of loud opera singers. It is less satisfying and slightly more stressful to know that the drugs she takes daily now include superstrong sedatives on a nightly basis rather than just as an occasional boost. And it is somewhat scary to think too deeply about the implications of not being able to breathe properly not just when lying down but when in any position other than upright. Most of the time I'm just thankful that we have the armchair and she's able to sleep safely in it. And grateful to the OT who is sorting out a better bed and more adaptations to the bedroom all of which should help. But then every so often, like tonight, I look at her snurfling in her sleep and am reminded just how abnormal this is, how far away it is from what the average six year old can manage. I'm used to the fact she can't roll, sit up, hold her head up, talk or swallow. But these are all optional - breathing is not. It isn't normal.


On a slightly different note, remember this?

In an entirely normal state of affairs for us, tonight I discovered what happens if you leave the Christingle orange on the nice wooden box and go away for a week. I'll spare you the photo.

Who needs normal anyway?
Tia

Happy New Year

Too much life to blog. Or a conspiracy of some kind; our friends in the cottages to either side of us and the cottages opposite us all had internet connection for our week away. True, one of them had to sit in the laundry room, and another kneel on her son's bed with laptop pressed to the bedroom window, but they still had access. We had nothing. So we had a week of real life instead.

This would have been a wonderful opportunity to get out and take lots of photos, and save them up for a nice pretty post on our return. Unfortunately life got in the way of that a bit too, and I have a fine collection of ultra shaky juddery unidentifiable photos. And some nice blue screen of death error messages on the camera. Must stop Little Fish from dribbling in it.

We had a good week though. Sometimes it's nice just to concentrate on the here and now. Mog scared some of the children and fascinated others with her need for regular hoovering. Little Fish found her old friends Zach the boy-boy and Heather the girl. And we got to know some newer friends better too.

Third time lucky for me this year. The first year we went away with this group of friends, Mog and I saw the New Year in riding on an ambulance through Launceston (all the church bells started ringing, it was very pretty even if not quite what we'd planned) on our way to hospital with one fosterbaby and Mog both fitting merrily. Goldie stayed with our friends and decided to sing the night away for them.

Last year no child in hospital, but two very tired children needing to be in bed before midnight.

And this year, adjoining cottages so children could be in bed and grown ups could stay in communication - lovely.

A peaceful week, pleasant days and silly silly evenings and not awful nights. I missed the photo of our bus fully loaded - we did manage to fit armchair, three wheelchairs, two children, myself and a partridge in a pear tree and all our luggage. Just.

Some photos survived the cull.Boston. St Botolph's, better known as Boston Stump. For my Reformed friends in the US, a plaquecommemorating the governers of your own Boston.

For relatives reading, the font where Dad and Uncle David were Christened when they were home from Dortmund.Driven past it a hundred times on our way to various assorted relatives, never been inside before.
Little Fish's close up of the outside of the church. I'll spare you her shot of the paving slabs and the one of the pigeon tails.And an only semi shaky interior
Little Fish running away from a new friend with the same wheelchair. Bittersweet this; one small boy half her age and half her size but with the same disability. Now everyone I know says how wonderfully well LF pushes her wheelchair, how zippy, how fast, how impressive, how all-round amazingly excellent she is. And then we see this little chap. And he has just a couple of extra inches of mobility, an extra couple of inches of stability. And he leaves her standing. LF has the practice; she has the art of bumping up ramps and kerbs. But he has the flexibility to turn on a pin, to lean forwards to get up a really good speed, and to balance and twist.
This makes me sad. And then it makes me thankful that we have her powerchair too. And I remember that those couple of inches could easily have gone the other way too, and then potentially she'd have no use of her arms either. But it is enough to reinforce the fact that she will continue to need her powerchair, that the wheelchair service were probably right and not just extremely generous to supply it, and that when she starts fulltime school she's going to need to have it with her if she isn't going to wear herself out completely.

And, randomly, and because they are in focus, two photos to give you an idea of some of the less obvious but still tiring caring tasks I face. Daily, someone needs to turn thisinto this
And if that isn't reason enough to appreciate everything our carers do, I'm not sure what is!

I am sorry about the photos; I think I need to de-gunge the camera somehow.

School starts on Tuesday; on Wednesday we start the next round of medical appointments and hopefully begin to get some answers or at least some decent treatment for Mog's present problems. Back to reality. But for now the girls are sleeping, the cats are fed, the fish have had babies in our absence, and I am ready for bed.

Good night, and good new year.
Tia

Holidays are here again

We are off on our holidays for a week from tomorrow. Eight cottages, eight families (we hope, one child in hospital so one family may have to join us a couple of days late), seven days of retreating from the real world and living in our own little enclave with neighbours who understand what it's like to have a child with a disability.

I'm not sure what internet access, if any, I'll have while I'm away. I thought I'd seen a WiFi sign on one of the things I'd read about the cottages, but there's definitely nothing there now. My dongle has gone for a wander, and my phone is ancient and unhip. So I probably shan't be around until the New Year - I hope those of you who are out celebrating have a good time, and those of you who are staying in have a peacefully uneventful night.

See you in 2009,
Tia

A blogger's Christmas

Mog had a beautifully peaceful night last night - too peaceful; I have gotten used to hearing every breath she takes and so had to keep checking she was actually still breathing. Happily I had plenty of opportunity to do so, since Little Fish was not a happy person much of the night. Hot and "I not comfy Mummy" and a pyjama sleeve which did not want to behave itself and kept somehow freeing itself from her arm and wrapping itself around her neck or Nippy hosing instead.

So a respectable morning start at 7, medicate Mog and find her some Christmassy clothing, then watch her fall asleep as I drink the first coffee of the day. Radio on, clothes on, more coffee surrounded by the silence of sleeping children. It's nice not to be woken at silly o'clock by children too excited to sleep, but after nearly ten years of being a parent, it would be nice one day to have a child even vaguely excited about the prospect of Christmas.

Grannie arrived to help out, then left to ready the church. Little Fish declared herself full after 6 spoons of porridge, got excited at the party dress then very sad at the idea of tights. Her reflux is playing up at the moment so I now temporarily have two children on feeding pumps, fun times. The pumps we get (and no, we don't have any choice about which make of pump or even which model) come with a rucksack which is larger than Little Fish's back; she wears it sitting in her Minny chair and it comes up over her head and rests on the floor all at once. Mog my big girl has hers running at 90mls an hour and we just about manage to get 1.2Litres into her over the course of a day. Little Fish my toddler now has hers running at 300mls an hour and gets the same volume in 4 separate hour long feeds. And doesn't fidget, I don't get my hair pulled and my face slapped for fiddling with her sore tummy, and she doesn't puke. Just a minor tantrum as we turn it on. And then major potential for mayhem as she dances around Mog weaving an intricate web of tubes and giving sets. Good times.

To church, and to a sentence I never thought I'd say "Jesus is the only true WYSIWYG" ("What you see is what you get" for the non bloggers amongst you). We had a biscuit tin filled with rubbish (what fun), a lemonade bottle full of water (oh the joy), and earmuffs instead of headphones for the drummer (I reckon the drummer's family and neighbours might appreciate the headphones more than the drummer anyway, but what do I know?). Wildly excited children, some of whom claimed to have been up before 4, a church packed full again, jubilation and celebration and glee. And Mog slept through it. And Little Fish sat on my lap kissing my nose whispering "I like you Mummy". It could have been a lot worse.

A quick church tidy up (what do you do with 80 leftover Christingled oranges?) and back to my parents' for some cooking. Mog slumbered on, Little Fish slowly and deliberately transferred cheese biscuits one at a time onto a plate, then repeated the process for chocolate truffles, mince pies, and finally unwrapped the butter and put it in a dish - a process so exciting she had to take a trip into the sitting room to show Grandad.

Into the dining room, a table, assorted chairs, a Christmas tree and presents presents presents underneath. And Little Fish more excited by her highchair than by thoughts of any gifts.

Lunch (goose). Mog woke up, had a lick of Christmas Pudding, choked and opted out of other foods.

Finally coffee and time to open some presents. Mog opened her eyes. The girls started with their gifts from Helen House, and Mog's doll turned out to be her favourite.
She held it in her arms for the rest of the afternoon, not knocking it off or kicking it down once just clinging on firmly and dribbling gently down its back. We could have stopped there, and both girls would have been happy.

But we didn't stop, and now both girls have books and scarves and snuggly blankets, Mog has a coat and a shiny silver hat, lots of music and assorted new tops. Little Fish has an entire range of In The Night Garden stuff - amazingly no duplicates and each new piece greeted with further glee. An Upsy Daisy in bed, a Makka Pakka, a Ninky Nonk (I want a Ninky Nonk, would make a great rollercoaster - Alton Towers or similar please take note), stickers, books..it's safe to say she's a very happy girl. And she has her own little cooker now (not a working one, although it does have a rather annoying noisy little button on one ring which when depressed suggests adding salt and pepper or cooking soup. Inspired idea; she spent a good hour cooking cabbage and car soup to feed to her new baby, as Mog clutched her doll and looked on, grinning quietly when she thought no one was watching.

Dr Who ("what's that Mummy who's that what's that why they do that oh NO what's that what's that?"). And then walk home, and utter meltdown for Little Fish (and grins from Mog; she does find it funny when LF gets into a state), and then bed. Two cats queuing in the hallway pretending to be starved. And Mog, still not able to sleep in her bed, but cuddled to sleep in my arms and then gently placed hefted into her armchair for hopefully another peaceful night.

A good day. Family times, phone tag with relatives (both mine and Mog's), good food, a cosy sort of a day.

And now sitting here in peace, Mog's music playing softly and the hiss and whine of Little Fish's Nippy hinting that she may finally have settled. One cat on the kitchen table watching the fish, the other on a comfy chair watching me and trying to persuade me to go to bed. He could well be right.

Night all.
Tia

Christingle merrily on high.

The Christingle.
It's a beautiful service, the Christingle, very symbolic. An orange to represent the world, sweets to remind us of God's gifts and the four seasons, a red ribbon for the blood of Christ and a candle for the Light of the World.

Lovely. We have our Christingle on Christmas Eve - two of them now so more people can come. And even then the church is packed to the rafters, children sitting on carpets and knees and shoulders and running up and down the aisle, parents and grandparents trying to contain the excitement and catch a few words of the service.

A short pause to fix our eyes on Jesus before bedtime and stockings and Father Christmas and reindeer and mysteriously closed doors with intriguing sellotaping noises seeping through the house.

Alternatively, 200 people, over half of them children under ten, each child armed with a lit candle in a building made largely of wood, many of them totally unfamiliar with the layout of the church. Mayhem potential: high.

I quote the curate: "Parents, er, perhaps it would be a good idea if you could hold onto your children firmly now. When lighting the Christingle, please hold the unlit candle sideways and the lit candle upright to avoid spilling hot wax. Please sit still. Emergency exits are situated to the back and side of the church and in the event of an emergency ocean landing, the chutes will turn into lifeboats. Due to the highly flammable nature of the candles, oxygen masks will not be descending from the cupboard above your heards. Children, please stay with your parents."

Eventually the only light in the church is a slightly wobbly, breath-holdingly excited bobbling of white candles, as we sing "Oh Little Town of Bethlehem".

O little town of Bethlehem,
How still we see thee lie;
Above thy deep and dreamless sleep
The silent stars go by;
Yet in thy dark streets shineth
The everlasting light.
The hopes and fears of all the years
Are met in thee tonight.

For Christ is born of Mary,
And gathered all above,
While mortals sleep the angels keep
Their watch of wondering love.
O morning stars, together
Proclaim the holy birth !
And praises sing to God the King,
And peace to men on earth !

How silently, how silently
The wondrous gift is given !
So God imparts to human hearts
The blessings of His heaven.
No ear may hear His coming;
But in this world of sin,
Where meek souls will receive Him still,
The dear Christ enters in.

O holy Child of Bethlehem,
Descend to us, we pray;
Cast out our sin and enter in,
Be born in us today.
We hear the Christmas angels
The great glad tidings tell,
O come to us, abide with us,
Out Lord Emmanuel !

Silence then, or what passes for silence in a barn full of overexcited children waving flames, and as we pray I notice two enterprising children toasting the mini marshmallows from their Christingle over the candle flames.

Candles out, a collective sigh of relief from Curacy and Sidesmen all.

And then into the foyer and many Christmas greetings, from regular parishioners and from visitors. And then home, and time for this
before a bath and bed. We don't do stockings here, Little Fish is scared of Father Christmas and Mog is far too wise for her years. So the big treat tomorrow morning will be Grannie coming to help me get the girls dressed, and then we will be off to church and then to their house for food and presents and general family fun.

And now Mog is asleep, and Little Fish has finished coughing, the cats are fed and the house is settling down for the night.

I hope you all have a peaceful night and a beautiful day tomorrow.
Happy Christmas,
Tia and the girls.

Yesterday

Yesterday
All our lurgies seemed so far away
Now it looks as though they're here to stay
Oh let's go back to yesterday.

Suddenly,
Little Fish has a fever of 39 degrees
And has puked a puddle on my knee
Her lurgy might be killing me.

Why it wouldn't go,
I don't know, no one will say
I just want to know
If they'll be ill on Christmas Day, hey, hey, hey

Yesterday
Mog was wide awake, hip hip, hurray
Today she slept the day away
It's bedtime now and she wants to play

What this germ might be
I don't know, no one will say
I just want to see
Them both well for Christmas Day, hey hey hey



All I want for Christmas is a week of sleep
A week of sleep
A week of sleep.
All I want for Christmas is a week of sleep.
A week
Of
Sleep.


I think blogging abilities and general all over brain functioning would be improved no end.

I am off. To dream, perchance to sleep.
Tia

Look Who's Back!

I think she mightbe feeling
better!


After lots of petty ridiculousness we finally managed to come up with a plan of action. Her neurologist felt that all Mog's recent symptoms could be explained as side effects from her newest anti-epileptic drug. So, on Friday, we halved it and added in one of her older drugs - Vigabatrin.

On Saturday morning Mog slept for 3 hours. A calm, peaceful sleep, no harsh breathing, no spasms or seizures and not as a result of painkillers or sedatives. And in the afternoon, she opened her eyes. And in the evening and overnight she screamed mightily and refused to settle and was generally all round horrible, but perhaps we won't focus on that bit.

On Sunday morning Mog slept again. And woke up, and spent the afternoon quietly grinning. And the evening and overnight being way beyond awful, and was banished to the playroom with Alice in Wonderland playing on a loop in the wee small hours, but perhaps we won't talk about that much either.

And this morning Mog slept for an hour. And then she woke up enough to stick her feet out as I pushed her round the corner, and then to kick her blanket off when we went into town.

And this afternoon she has decided to start taking an interest in life again. Eyes wide open, gentle shouts, and real communication once more - big tongue out yes when we ask if she's feeling better, big scowl when I explain what we think was happening.

Things aren't perfect, she's still needing a fair bit of suction, she's shooting dribble despite her anti-dribble drugs, her breathing when awake is still quite harsh. But she's back, she's here, she's aware of her surroundings again. The rest may come back when we discontinue the new med altogether. But whether it does or not, right now, I don't mind. She's back, and this makes me very happy.

Tia