Monday 31 December 2012

Happy New Year

Across the web, people are posting thoughtful annual reviews, resolutions for the year ahead, generally insightful and interesting well-planned posts.

This isn't one of them.

Instead, I'll see the year out with precious friends. And resolve that this will be the last holiday where we stuff tLP into a cot. I think that's fair.

Sunday 30 December 2012

There were four in the bed

And the little one said "how nice to see you."

It's hard being so far away when friends are so unwell. Back in the summer, we made plans to spend new year here in Lincolnshire, close enough to visit friends we've not seen for far too long.

So when a small girl was poorly and stuck in hospital, we were doubly thankful we'd booked our holiday close enough to visit.

And, as it turned out, we were able to help out. Only in a very small way, by fetching a sibling to spend the afternoon in hospital. But more than we've been able to do from home.

The girls were very pleased to see each other. The boy was pleased to be able to kick them both. And three mums were very very happy to be able to be in the same room together, after a nearly three year gap. Even if it had to be a hospital room.


Thursday 27 December 2012

Letter to a newer mother: what I wish I'd known earlier.

A new mum has introduced herself to a mailing list I follow. She has a newish baby, who probably has cerebral palsy, following a pretty rough introduction to this world. She seems pretty set in some ways - paediatrician, early intervention, therapies and referrals all happening or being chased. But she's asked for advice from more experienced parents, wanting, of course, to have some kind of glimpse into this strange new future, some idea of what more she could or should be doing, and especially, what we parents wish we had been told sooner.

So that got me thinking. My answer will of course be different to yours, and ours will be different to hers, once she's in a position to look back. And mine as an adoptive parent will inevitably feel different to anyone struggling with the whole birth/genes/gestation/whatever bits. But here's my list.

I wish I'd known

  • that time passes so quickly. And that tiny babies become toddlers, and toddlers become big school girls in the twinkling of an eye. 
  • And that infancy and childhood are really important, and should not be allowed to get lost in the endless rounds of medical appointments and therapies. 
  • That I am the expert in my child; I am the only person who gets to see the whole child. And that therefore I can and should advocate for the whole child, rather than allowing them to be swallowed up in any one particular form of therapy. 
  • That friendships will change. Some people will fall away, others will deepen. And that I will have a group of wonderful women who I wouldn't know at all, of it weren't for us all having our own special children. 
  • That it is ok to need help, and ok to accept help. And that it is useful at times to be able to be very specific about the help I need. And that it is also ok to turn down unsuitable help. 
  • That what I may find helpful may be completely different to what someone else in the same position would find helpful, and that neither of us are wrong. 
  • That my life would become so immeasurably richer and deeper as a result of sharing it with Miss Mog. 
  • That celebrating inchstones can become so much more satisfying than celebrating milestones; that every tiny step of progress made becomes something to share with the world. 
  • And that true friends will be right there cheering for you and your child when that happens. 
  • That you can get used to anything - seizures, stopping breathing, giving multiple medications, tubes and lines and holes in parts of the body which didn't ought to have them. 
  • Everyone has a poo story. But not everyone needs to hear it. 
  • The world won't fall apart if you reschedule a doctor's appointment to do something really important, like feeding the ducks. 
  • One wonky smile can say more than the longest speech in history. 
  • A largely immobile child really can "accidentally" clear tables with a well-timed spasm. 
  • Problems which seem insurmountable now will disappear, and will be replaced by new problems. Which will also either disappear or be absorbed into the new normal. 
  • Competitive parents really can be thick-skinned enough to brag about their marvellously advanced child whilst dripping with fake sympathy as your precious gem lies twitching in your lap. 
  • Conversely, you can be a great comfort to parents who have also been stung by the competitive  Mum, because your child is still lying across your lap, not crawling off needing to be chased across the room. 
  • People will feel compelled to tell you their own stories, including abortions, or relatives sent away and locked up, or how their pet dog had to be put down. You don't have to listen. And it's ok too to play special child bingo, giving points for "I couldn't do what you do." "You're such a saint." "Innit a shame?" and whatever phrase drives you up your own wall. 
  • Lack of sleep will destroy your memory. Everyone knows how tired new parents get; doing the waking night thing for a decade or more brings whole new layers of exhaustion. Write things down. And get used to being late. 
  • It's ok not to be perfect. It's also ok to go all out to present the perfect image, if that's what's important to you, and it gives you strength. 
  • Guilt lurks everywhere. Beat it down. 
  • People will always question your judgement. And give you titbits of advice which will make you want to strangle them slowly. Don't. 
  • Equipment takes up space. A lot of space. If you're thinking of moving, factor that in. My girls currently have seven wheelchairs plus two wheelchair sized shower/toilet chairs between them. 
  • You probably can do just about anything and everything you would have done if your child weren't disabled. But some of it may simply be toouch like hard work. So sort put what's important to you, and what's not. 
  • Abuse and neglect aside, there is no wrong here. Your choices will be different from mine, and that doesn't matter. What matters is that we work as a family. 
  • The future won't happen all at once, but one day at a time. So don't lose sleep over how you will manage years into the future but concentrate on finding the right balance for today. 
  • Wheelchairs are great inventions, and the right chair for the child can be life changing. 
  • Seizures suck. 
  • I can do all things through Christ who strengthens me. 
  • Love is completely overwhelming. 
  • You can do this. 
So that's my list. How about you? 

Wednesday 26 December 2012

Christmas Happies.

Hearing: Tchaikovsky's Nutcracker Suite.

Seeing: Mog's new projector; deeply intense green stars covering bed and walls and ceiling. And a hint of fairy glitter for hair.

Smelling: lavender and rose hand creams, coconut body wash, Christmas candles burning gently, and a pine tree gradually shedding needles.

Touching: snuggled into soft new pyjamas, with furry coats and super soft socks stored for the morning.

Tasting: blended turkey and sprouts. Licking rum sauce and brandy butter and chocolate truffles and bread sauce.

Doing: playing stomp rockets in the park, cuddling on the settee, having stories and playing games, making Lego stables and wooden castles, exploring the new keyboard for the iPad.

Loving: spending time with family. Listening to cousins negotiating a relationship no longer conducted via Skype. Stepping out of routine as much as possible to play games, read stories, cook Christmas yummies.

Thinking: of friends we will be seeing in just a few days, and of friends and family we'd love to see but can't.

Making: memories.


Tuesday 25 December 2012

Happy Christmas.

Stockings and Father Christmas, Carols and church, presents and lunch and family phone calls. All the ingredients of our traditional Christmas, complete with Brandy Butter left in the 'fridge at the wrong house, slices of Christmas cake stripped of marzipan and icing and crumbled on the plate, a post-prandial stroll to find the local Christmas lights. The inevitable "I'm bored" from a child temporarily inconvenienced by being required to stop for lunch, presents minus tags or having had tags exchanged, an unwrappable gift (tropical fish don't do well left under the tree for a day or three), and a minor spillage of something stain-y onto a cream carpet.

A lovely, relatively unstressed, gentle day spent with family and in contact with friends. Giggles from Mog and approval from tLP.



And mixed in with the celebrations, thoughts for friends - plural - who have seriously ill children in hospital today. Friends - again plural - who have seriously ill children at home. Friends - still plural - facing their first Christmas without one of their beloved children. It's been a rough year.

And as the girls sleep - one peacefully, the other very fitfully - and outside, fireworks mingle with late night dog revellers, singers, and a fairly rowdy domestic disagreement, I pray that there has been peace and joy and love today for everyone in some measure.


Monday 24 December 2012


In the bleak mid-winter
  Frosty wind made moan,
Earth stood hard as iron,
  Water like a stone;
Snow had fallen, snow on snow,
  Snow on snow,
In the bleak mid-winter
  Long ago.

Our God, Heaven cannot hold Him
  Nor earth sustain;
Heaven and earth shall flee away
  When He comes to reign:
In the bleak mid-winter
  A stable-place sufficed
The Lord God Almighty,
  Jesus Christ.

Enough for Him, whom cherubim
  Worship night and day,
A breastful of milk
  And a mangerful of hay;
Enough for Him, whom angels
  Fall down before,
The ox and ass and camel
  Which adore.

Angels and archangels
  May have gathered there,
Cherubim and seraphim
  Thronged the air,
But only His mother
 In her maiden bliss,
Worshipped the Beloved
  With a kiss.

What can I give Him,
  Poor as I am?
If I were a shepherd
  I would bring a lamb,
If I were a wise man
  I would do my part,
Yet what I can I give Him,
  Give my heart.

C Rosetti

Thursday 20 December 2012

Ups and downs.

Ups - beautifully timed and totally unexpected Toblerone delivery from a friend. Hurrah.

Downs - it's definitely disconcerting to have the car you're driving ask you to turn the engine on. Especially when combined with threats of potential automatic switch off.

Ups again - ginger biscuits always taste good.

Please forgive wonky order. Phone not cooperating.


Tuesday 18 December 2012

Geoff Clark, UKIP, and my little girl.

I don't as a general rule bring politics to this blog. I'm not a party member; I do vote, and I haven't entirely lost confidence in the hope that somewhere under the spin there may well be some MPs with integrity. In all parties. However much or little I may agree with their world views.

But I can't ignore this.

Geoff Clark, a UKIP candidate, has suggested that abortion be made compulsory for foetuses found to have Down's Syndrome, Spina Bifida, and other syndromes which "would make them a burden on the state as well as on the family."

And according to the article linked above, a UKIP spokesman has defended his right  to hold these views (and other fairly unpleasant but not disability specific views), and suggested that he would make an excellent candidate.

Mr Clark has now, apparently, apologised.  If you can call it an apology. He "meant no offence" and he wishes us parents well. It seems writing something quickly, whilst being unaware of the views of the political party you represent is an acceptable excuse for advocating something one step beyond the eugenics of the Nazi party.

UKIP have now distanced themselves from his views and suspended his membership.

But I can't help wondering, do they really genuinely distance themselves from his views, or were they surprised by the outcry his manifesto has produced, and have they had to move on swiftly from backing him as an excellent candidate despite his rather unfortunate views?

And, in case you're thinking he might have a point regarding out of control budgets, answer me this. Is my daughter a burden? Or a blessing? 

True, she's one expensive chick. She's pretty high-maintenance. She's just spent the morning in hospital, having a minor procedure under general anaesthetic, and I don't like to think about how much that might have cost.

It's also true that when she was born, and when the full extent of her disabilities became apparent, the doctors around her didn't think she would survive. She left hospital, not because she was better, but in order that she might experience love, ordinary things like the wind on her face and raindrops against a window, rather than spend her remaining days in SCBU's basement broom cupboardlike side rooms.

But those doctors were wrong, and Geoff Clark is wrong - how can you see her as just a bundle of debt?

Whatever your opinion on abortion as a woman's choice, compulsory abortion can surely never be acceptable? And if it is, I don't want to live on this planet any more.


Sunday 16 December 2012

Mog's Knight needs a New Steed

Two friends
Who have been friends a long long time.
Who have each at times been written off by people who should know better than to place limits on a child simply because the writer-offers don't know how to assess a child who doesn't tick neat little boxes.
Two friends
Who don't need words to show appreciation for each other. 
Who, despite being more than capable of "accidentally" using teeth when having a cuddle, have never yet bitten one another.
Who don't forget each other even if it's six months or more between meetings.
And now Mog's knight, her hero, needs new wheels. 
He has the most amazingly bendy fingers; put a standard joystick in his hand and his fingers bend around it back towards his body, making it almost impossible for him to drive a standard chair. 
And he has a variety of different needs which mean his local wheelchair service cannot provide a power chair for him, and even if they were able to do so, they would not be able to provide the extremely specialised chair he needs.
Mog's Mr Sunshine is stuck wherever anyone pushes him. So's Mog, but her particular combination of nearly constant seizures combined with a massive visual impairment mean that a power chair would probably be a rather dangerous tool in her hands. 

But Mr Music Maker watches the Little Princess and others with power chairs, and he aches to be mobile himself.

He's borrowed tLP's chair; he has a chair very similar to hers, and he practices diligently both in it and out of it, to make the movements necessary to drive it. But he needs something more technical if he is going to have independent mobility. 

Mog's Knight has a rather fabulous carer, Sarah. Sarah is choosing to spend her 22nd Birthday swimming 22km, in the hope of raising some of the approximately £20,000 needed for a Snapdragon, the wonderful chair which will have Sir Knight galloping without the leading reins. This is a link to the Turbo Trust's justgiving page, if anyone feels like helping her to reach this target. 


Saturday 15 December 2012


As tLP went back to school and prepared herself for the Big Event yesterday, Miss Mog had her own excitement. A reprisal of an earlier role, but then she does look rather dashing in blue, I think.
She was in respite the night before, and much consultation had happened between the various authorities as to the necessity of having her in school by 9.30 rather than her usual 10AM. Despite this, her transport did not turn up at respite until 9.26. The show started at 10 as planned, and those of us aware of her absence scanned the programme anxiously, willing other classes to move slowly, hoping the comperes would drop notes and slow things down.

They didn't. The school choir made a joyful noise (and will be featured on local radio on Saturday morning. The sixth form narrators read with enthusiasm, and the classes paraded on and off stage to sing and dance and play their instruments and wave to parents. Beautiful.

Despite the lack of hiccups, Mog did just squeak into the hall in time to join her class, who were singing the Calypso Carol. Phew! I think that's what they sang last time she was Mary, back in the nursery. The wise man that time has since transferred schools, as has the angel. The shepherd is no longer in Mog's class, so she had a new backing group (their parents may choose to see their roles slightly differently) this time. I made Mog's costume from a pillowcase last time; can she ever have been that small?

This time, as the grand finale, nearly all the pupils were able to crowd onto the stage to sing their final song and wave their last "Hello Mummy" waves. So nice to see everyone together, from the tiniest wobbly dot in the nursery to the very elegant and sophisticated sixth formers (who then served tea and coffee and fleeced us sold us the fruits of their labour over at the Propeller Project.

It takes a lot of work to put on a school performance. It takes even more work to put on a performance which is meaningful to all the pupils involved, including those who don't manage well with crowds, who cannot sit still, or who can do very little other than sit very still. To create a show where every single pupil's input was valued and appreciated was very very special. Some pupils had recorded their input earlier to reduce the overstimulation, some had clearly practiced very hard, and others brought some beautiful inprovisation. All clearly enjoyed themselves, as did the audience. Well done!


Friday 14 December 2012

Growing Up

I have just dropped the Little Princess off at her Brownie Sleepover. She had a practice run back in the summer, staying until bedtime and then coming home. At 11PM, still full of joy and enthusiasm and thinking that she might want to stay next time.

So when this next sleepover came, tLP was quite excited. And then worried, and then excited again. And then we started making plans.

Our aim was to be free from overnight tubes by this point. We haven't quite managed that, but she is able to direct one of the Brownie Guiders well enough that hooking her up won't be a problem.

She didn't want the Brownies to see her on her Nippy (ventilator). And she was worried that it might be too noisy. So she spoke to the respiratory nurse herself, to ask if she could leave it off for one night. And received permission to do so.

She has gone without her gastrostomy extension tube, and so will be taking all her meds orally. Even the ones which don't taste nice. She has chosen to avoid the leg bag option, and will therefore have to take responsibility for noticing when she needs to cath. She has stripped down her morning and evening routines to the bare minimum, and is confident enough that I know she will either manage herself, or manage to direct others to help her with all the bits she really can't avoid doing.

And she has remembered her torch, her apron, her pencil case with sharpened pencils, two pints of milk, and her craft tubs.

Not bad for seven!

Thursday 13 December 2012

A knock at the door, 
a parcel for Tia
No deliveries expected, an early Christmas present?
 A Cadbury's box, much too tempting to be left under the tree.
Besides, there might be a note from the sender
 It really should be checked out.

  The Little Princess pounced on her favourites, 
And I found the note
And told her all the chocolates were for me.
 Six years ago, I brought a baby boy home from hospital. A tiny baby boy, wrapped in a blanket, frail and exhausted and with a range of interesting medical problems. 

He stayed with us for a little while, and I told my friend about him, and about how he was going to need a forever family. 
And he went to lovely carers, and I gained my lovely Little Princess, and we met at hospital sometimes, and I had reports about him, and thought that was the end of it. 

But then he came back. He and tLP had great fun together; gone was the fragile baby, and here was the bouncing toddler. Still with a frightening number of medical problems, but doing generally rather better than people had anticipated. 

And I told my friend about him, and how he needed a place to stay, and I told the social workers about my friend.

And it took quite a while, but now they are mother and son forever, and in the midst of their celebrations, they found time to remember the date, and to send a parcel of chocolate weighing more than that little baby did the first time I held him.

I'm not a foster carer any more; something it still feels fairly strange to tell people. And I don't know what's happened to a lot of the children I have fostered - I hear the initial endings and then life moves on and that's how it should be. I don't forget the children, but they settle into new families or back with original families, and the period of time they spent with me is filed under temporary aberration, unfortunate episode, or something more positive but still finished. That's fine; as far as I know, they have gone on to have very happy lives and I'm pleased to have played a part in it all. But it is very lovely to have been remembered, and it is lovely to know that we will stay connected. And it's always lovely to have chocolate! And yes, I did agree to share it. 


Wednesday 12 December 2012

12:12 12/12/12

I'm sitting in the kitchen, cooking spaghetti bolognese and talking to tLP, who is off school yet again.

Nothing major, nothing terribly significant, and indeed this is only one minute, no greater or less than any other moments this day or year.

But symmetry pleases me, and I thought I'd record what I was doing at the time. Not entirely what I'd planned to be doing, but not bad either. Just your average kind of Wednesday.


Sunday 9 December 2012

Breathing Out Slowly.

After holding my breath in for far too long.

One Mog, coughing but smiling to herself this evening after a day spent mostly asleep.

One Little Princess, so much better now her caecostomy is no longer draining pus.

Two "imagination babies"; Tyler and Zak, who apparently need very careful watching. They kept her up all night because Dad was away, so it was just her. And they jumped out of bed and ran around on the floor, throwing clothes and all sorts, apparently. This earned them a severe and unaccompanied nap time as we went to church.

Sitting in a different space in church; strangely dislocating. Two rows further back and on the other side, not a huge difference, but a change in perspective. Also disconcerting, other members of the congregation who installed chairs and huddled right at the back rather than accept my tweaking of Mog to allow them through to the two empty rows beside us. Hey ho.

Decorating the tree this year, directed almost entirely by tLP and it doesn't look at all bad. Certainly no worse than I've managed in the past. Lametta hides a multitude of imperfections.

And then a late afternoon stroll to check other people's Christmas lights. Abbreviated because Tyler and Zak wouldn't hold hands to cross the road, and were running into traffic.

So home, and tea, and pyjamas and bed and now two girls sleeping, two cats washing, and the house and I can both breathe out and look forwards to some quiet time together; I think we may have both girls in school tomorrow. Hoorah.


Saturday 8 December 2012

Letters edition.

Dear girls,

An empty laundry basket is an accomplishment to be enjoyed, not a challenge to overcome.

Dear cats,

A full laundry basket is neither a bed nor a personal grooming station.

Dear carer/TA/nurse/whoever,

When you finish suctioning my daughter, flush the tubing through before switching the pump off. Then, before you do anything else, remove the used catheter and replace with a fresh one. Suction catheters are not Yankeurs and are not reused.

Failure to clean the hosing and replace the catheter means that next time I need to suction, I first have to clean ancient and foul smelling gunk from the tubing and grab a clean catheter. Not something I want to be doing when there's an airway needing to be cleared.

Oh, and those clean catheters? They work much better when they haven't been folded three times and shoved in a corner. That's why I post them down the back of her chair.

Dear germs,

I know you like this tube of year. But I'm busy. Could you please back off do both girls can get back to school? I really need some thinking space before the end of term.

Dear Christmas tree,

Please stay upright. You'll have a much better view of life in our house. I promise we will get those decorations out and pretty you up tomorrow.

Dear self,

Learn to reverse the bus in the dark. Yes it's bigger, yes the back windows are tinted. You still need to be able to leave the house. Without chewing up the lawn or the neighbours' cars. And no, asking the neighbours to trim their hedge and reposition the concrete post isn't reasonable.

Dear life,

Please slow down just a little.

Yours, etc.


Friday 7 December 2012

Blogging Matters

I've had to put the comment verification thingy back up; I was getting over 100 spam mails a day and they were multiplying rapidly.

Spam is weird stuff. A lot was simply long lists of links. But one was a lengthy piece about the unwisdom of blogging about my grandmother, another believed my commentators were "brain dead" and a third told me repeatedly my spelling was rubbish and my photos lacked "pop". All with a handy link to a variety of different and generally inappropriate websites.

I wonder why the spammers are so sure I and my readers would be interested in products designed to augment certain appetites or increase the size of various bits of anatomy? And I also wonder why insulting the blogger is seen as a sensible marketing tool?


Thursday 6 December 2012

Wahey for the Wahooligan!

Six years ago, I collected a small and somewhat fragile baby from hospital, and took him home for a while. I love having babies for Christmas; there's an excellent precedent.

I remember celebrating one week without a hospital admission; it took longer than you'd think. I remember his first admission for RSV, his first seizure, his first joy at a particularly nice crinkly flappy fluffy toy.

And I remember extolling his virtues to a friend of mine, trying to push this baby and this friend together.

Three years ago, we welcomed the Wahooligan back into our lives for a little while. And that same friend and her family stepped in to help out for a while when we went on a previously booked holiday, and when tLP had hip surgery.

And my friend fell in love with the Wahooligan, and I think the feeling was mutual, and so they stayed together.

And lots of things happened, and life got complicated, and that's not my story to tell.

But today I stood in court and watched a Judge pronounce them Mother and Son. A new name for the Wahooligan, and a long long time coming.

In that courtroom were all the people the Wahooligan had ever lived with, along with the social workers who had done their part in making it all happen. And one small boy, staring at his Mummy and calling for a toy.

There's been a lot of loss, a lot of sadness, and a fair amount of serious medical whatsittery. There's also been a lot of continuity, for the Wahooligan's former carers were also tLP's former carers, and for a little while former siblings played together as friends as adults caught up and remembered.

And today a new name, a new relationship, a new family created. And from now, I very much hope, the start of a long and happy ending.

So Wahey for the Wahooligan, and may he be singing on for a long time to come!


Wednesday 5 December 2012

Do you remember?

Perhaps not every good conversation begins with "do you remember when...?" But I know it makes for a good evening the conversations can spin back through the years. We did so much growing up in our twenties, and I love it when Friend and I can catch up.

tLP (still hot but otherwise well) loves it too. Much silliness ensues until bedtime, and then more adult silliness mixes with more sober thoughts; the perfect recipe for a really good evening.

Friend has a new cat; I am so pleased. The perfect cat for an indoor life, and, outstandingly, multiple family offers of help with said cat should Friend ever need to come here in a hurry. Friend is my girls' UnGodly Mother; unwilling to make spiritual promises on their behalf she is nevertheless their replacement parent should anything happen to me. It's great that her extended family recognise this, despite most of them never having met us.

And so we plan for potential future child free weekends. And definite child-filled days. We sit and chat and stroke cats and the Rosé flows, and suddenly it is midnight. And we have crossed continents and learnt not to poke leopards with sticks, and rebuilt the world and despaired over Jerusalem, laughed over our mutual lack of geographical skills and admired the cats, eaten vast quantities of little nibbly nothings,and barely scratched the surface of the catching up which can only really be done in person.

A new job, a shared house, a bunch of strangers thrown together. It could have been disastrous, and I think it probably was in some ways. But out of such things and a love of curry are friendships born. She knew me pre-children; I knew her pre-nursing, and now it doesn't matter if it's been six months or six days since we last spoke; we will always catch up or fast forward over the gap.

Friend is a friend who doesn't read this blog, although she does know about it. So I can sing her praises without embarrassing her. And they are worth singing. But I'm also really rather tired, so I'll shelve the songs for now and sleep in the happy knowledge that our sofa bed has an occupant again and that we have all day tomorrow to continue our conversation, teach Friend how to make scones, and embarrass tLP by being happy grown ups together.


Monday 3 December 2012


"Mummy, mummy, what's my temperature?"

"YES!!!! I am the champion and actually the winner of the being poorly!!!"


Sunday 2 December 2012


Advent Sunday, one of my favourite days of the year. Marking the official preparation for Christmas. And we weren't at church.

The Little Princess woke up a little poorly, with a temperature of 40.9c (105.6F for my stateside friends). Miss Mog woke up snotty but happy - again, combined, they make one properly poorly child. But separately they only have half an illness each. Mog doesn't seem to be poorly at all, just snotty. This we like.

TLP on the other hand was doing what she does best when she is poorly; becoming very affectionate and wanting lots of cuddles and snuggles and kisses. Temp came down beautifully mid morning and stayed normal until around 3, after which it climbed back up to 39. And now she's lying in bed uttering gibberish about having undone things again. But seems to be otherwise fine. Why do they always get iller at bedtime?


Saturday 1 December 2012

Snot City

Miss Mog was a little tired yesterday. Not poorly, just more absent than normal. She slept nicely last night, but woke up with a cold this morning.

Snotty but happy; more than I was, having had too recent a reminder of how serious colds can be for our guys.

And then she stopped being snotty and started being hugely unhappy instead. Sorted the uncomfortableness out, and the snot started up again. Steps taken to reduce the snot, and back came the seizures and spasms. Joy.

Now she's in bed, but despite shedloads of meds is fighting sleep with her heart suggesting she might in fact be running a marathon, not merely lying in bed with a machine doing the breathing in bit for her.

Meanwhile, tLP woke up snot free but with a blocked catheter for the second morning in a row. A more southerly snot maybe? And with a giant frog in her throat which has sent her gradually more creaky as the day has gone on. Is it wrong to wonder how she'd be if she lost her voice completely?

Not feeling at all unwell, just drinking pints in an attempt to drown the frog.

Put both girls together and there's a poorly child between them. But neither of them really qualifies as ill individually. Meanwhile I'm tired - and I can't work out if that's poorly child or just juggling frogs and snot whilst also attempting to be vaguely useful at a Guide sleepover.

Joys of the big blue bus (yes, she's back; no, they couldn't find the problem) - parking at church easy enough but getting out of an unexpectedly full car park necessitated interrupting a concert to ask another driver to move. Oops.

Now sleep needs to happen, but first both girls need to settle. Mog is protesting, and tLP is traumatised. Both cats chose tonight to hide in her bedroom. Benjamin jumped on her face 2 minutes after I'd turned out the lights; Grolly was more patient and waited eight minutes after I'd evicted Ben. Neatly ensuring one small girl was even more wound up than she had been after a late night and much chocolate with the Guides.

Now I must find a toy or two for parade service tomorrow; I'm thinking bubble mixture and secondhand playdough probably won't quite hit the mark.


Friday 30 November 2012

Five years

Is a very very long time.

Five years ago, I stood outside on a cold and muddy day, and watched a coffin being lowered into a hole in the ground.

Five years ago, I stood back as others claimed the right to being mourners in chief; stood quietly as part of my heart landed six foot under ground, and as the tumult of my daughter's life continued even at her funeral.

Five years ago, I hung a photo collage which spoke the words I couldn't say, which demonstrated the second half of my daughter's life, as others focused on her earlier years.

Five years ago, I lit 97 tealights standing around the communion rail; five years on I'm still giving away the little glass holders.

Five years ago I busied myself and thought about the people who couldn't share this last goodbye, and failed to recognise a large number of those who did.

Five years ago I made mini pizzas and sausages and cheese bites and tried to feed a crowd with the kind of food my daughter used to love.

And now, finally, five years later, I think I'm angry about some of that. I am angry that there had to be so much compromise. I am thankful that the truly important aspects of the funeral were right - a Christian service, our church - but angry that so much else had to be negotiated or lost.

I am angry about the three months we had to wait before being allowed to bury her. Angry that we couldn't dress her beautifully one last time. Angry that her death was about as mechanical as you can get, that her last experiences of touch were through plastic gloves, her last hugs wrapped in plastic aprons, her last sounds forced past the tube of a ventilator.

I am angry that her belongings were torn up, binned, divided out between people who had never seen them before and never met her.

I am angry that confidential records, which were supposed to be dealt with by other parties, are still sitting under my youngest daughter's bed, five years later.

I am angry that the life story photos from the children's home where she stayed before coming to me were promised for years and never turned up either in life or in death.

Five years on, I am angry that carers who were her carers first and now care for my other girls seem to have forgotten, and no longer always use the bath thermometers.

I am angry that I still have a pair of legs (night splints) under the bed and nowhere to send them. And I am angry that my feet are too small, and my daughters' too puffy or too stiff to wear the pair of purple boots which still sit at the end of the bed.

I am angry that I never took her to some of the places we'd hoped to go. And glad for all the places we did get to, but angry for the missed opportunities, the wasted chances.

I am angry that I can't properly call her my daughter; I want to send her name in highlights in rockets to the moon, and I settle for a pseudonym.

I am angry that her fingers cannot dig into my arm and pull me towards her. That she can't shoplift any more packets of polos, that she will never again get to smear chocolate on commuters on the train.

I'm angry that she never got her bus pass, she didn't get to finish college, that tLP will never get to read her stories.

Or maybe I'm just sad.
How can it be five years?

Thursday 29 November 2012

Dear paediatric outpatients.

You're overcrowded and understaffed. And your acoustics are evil for the baby clinic. I have a suggestion. When we arrive, how about being honest about the huge delay? That way I, and others, might decide to go for a coffee. This would a) ease congestion in the waiting room, b) boost business for your coffee shops, and c) serve to mightily reduce my own frustrations.

Better yet, may I suggest actually sorting the clinics out so they don't have ridiculous delays?
Considering that you are an Orthopaedic Hospital, you may find you have a large number of patients who are wheelchair users. Moreover, when holding multiple spinal clinics at the same time, it would be a reasonable safe assumption that a high proportion of those wheelchair users will have bulky, customised wheelchairs. You know, the ones made by your wheelchair services engineers.

You have an unused and beautiful children's ward attached to outpatients. It has big bathrooms, hoists, spacious rooms. Would it not be sensible to consider opening even just one room of it for use by some of your larger less mobile children? Having to reverse into those time slips of consulting rooms, then getting wedged under the sink so the door can close, is simply undignified. If that is not possible, then surely you could consider having just one room with a bed available for changing older children where necessary? And believe me, if we have to wait several hours, it is necessary.


Dear Surgeon,
Thank you. I think discharging us with leave to see you again if we change our minds is a good plan. Thank you for being honest about surgery and supporting our decision. See you next month with the other one - would be nice if we could actually start talking about a date some time soon; it's been over two years since you first said this was urgent.


Wednesday 28 November 2012

Lotty's gone Dotty

And we're back to driving Grotty.

A nice day today. The kind of day where you wake up ten minutes before the alarm, so steal a march on the day. When the carer sneaks into the kitchen and does the washing up. When finally, plans and ideas start coming together to create things which actually work and are fit for purpose.

A morning pottering and receiving phone calls.

An afternoon springing Mog from school and driving her to the dentist, at the other end of the county. A beautiful drive, apart from an annoying blip from the radio.

Arriving at the dentist, we are a few minutes early. I take my time unclamping Mog, enjoying the funkiness of automatic rear doors and lift. We trundle over to the Dental Access Clinic and wait for the doors to open. As we wait, we are joined by another nine people, and I wonder how many of these people also have appointments at 1pm.

The door opens, and a man in blue scrubs smiles, and says "we're doing toes today." Is it tiredness which flips me into insane fury at a wasted journey rather than realising he is joking?

We meet the dentist, a very fast talking woman who cannot slow down, even when repeatedly requested to do so. I absorb maybe every other word, Mog perhaps one word in ten. No matter; she gives Mog's mouth a brisk going over, and has an excellent plan of action. One which may actually bring her teeth back to shining whiteness. One which involves taking the time over repeated appointments to get rid of the calculus, potentially also removing some baby teeth under a local anaesthetic, and one which assumes Mog's mouth is a mouth worth treating. We like.

And then we load ourselves back into the bus, and drive home. And Lotty decides to enliven the journey. It's the radio at first; on and off and on again. Next the windscreen wipers decide to go into blizzard mode, and then the indicator insists I am turning left.

I do; there's a left hand turn and it seems as though it might be sensible. As I pull into the car park, Lotty informs me there's an issue with the airbags.

We sit for a minute, and I debate tge options. Home is not too far away, and she's driving OK even if the signals are all a little weird. So we head off. The speedometer decides to alternate randomly between miles and kilometres. The heater comes on, and off, and on again. Lotty informs me that the handbrake is on and that I am in Park. Disconcerting on the dual carriageway. And then, as I ignore her, she ups the game. Now we have a big red flashing light telling me the battery is dead. Then the lights dim, and suddenly I have achieved 99miles to the gallon. Hurrah. Wish I could believe it.

Finally we are home, and there's a message from motability, wanting to know how we like the new bus. I call them back and explain the problems. We discuss a way forwards, and I call the RAC.

RAC do a spot of troubleshooting and come to the same conclusion I have reached, namely that it is incredibly unlikely everything has failed all at once, and far more likely that it is the electricals.

And now we get to play the blame game. It's a new car - so is it a Mercedes problem? Or is it that O and H did something to it when installing the lift and restraints? O and H insist DSP must have done something, DSP say they installed nothing, just delivered it. Let's try S and B - nope, they just ordered it.

Leaving the RAC-man to sort things out, I zip to school (on foot, how tedious) to collect tLP from her choir practice. She and her Well-she-does-actually-go-to-my-school-but-I-play-with-her-at-church-and-Brownies-and-not-school friend bickered gently over who would push Mog down the school drive; a task eventually delegated to friend's Dad, apparently as a special birthday treat. And then we ran for home.

And now Lotty is sitting all forlorn on the drive, and is off to Mudie-Bond in the morning. tLP is all upset because apparently Lotty will miss us and what if the car hospital can't make her better? And Mog is asleep, smiling as she thinks of all the many ways in which the added length of her new chair will make getting anywhere in our old bus somewhat tricky.

And me? I'd like to think that I could look after a brand new vehicle for more than six days without inflicting mortal wounds, but since that doesn't appear to be the case, I'll settle for being extremely thankful we were here and not up in Yorkshire, and that it's someone else's responsibility to sort out, not mine. Oh, and also thankful for the fact I haven't yet sold the red bus. Procrastination has its uses. Which reminds me, anyone want a nice red WAV? Rather beaten up, a bit creaky, but lots of space and two children in wheelchairs can ride side by side and hold hands.


Monday 26 November 2012

Comments from the weekend.

4 year old cousin, expelling nether gases in the way only small boys can. 2 year old cousin, gazing up adoringly, "ooo how did you do that?"

Mog, showing off her new chair.
Great Grannie, looking at the various bolts and meccano-esque pieces "Can you get a 'fridge and cooker installed on that?"

7 year old cousin, on being told not to call her brother names, even if it was "in the game;" "Then I'm going upstairs to get away from He-Who-Must-Not-Be-Called-Names".

Parenting: the next generation. A new game. Small children tantrum and shout at Mummy. Mummy tantrums and shouts for her Mummy. Grannie tantrums and shouts for her Mummy. Great Grannie smiles and nods graciously.


Oh - and since family stuff probably isn't terribly interesting to anyone not family, here's a very rare picture - two cats in harmony having just spent the week in very close quarters. It won't last; in fact they're already both rooting for new spots. But in the meantime, cuteness abounds.

Thursday 22 November 2012

Tip and Fail

This is a tip and fold seat. It's a very solid, very firm chair when untipped and unfolded. But it's also supposed to be an unobtrusive block towards the back of the bus when we have lots of luggage. Like now.

And I can tip it. Or fold it, whichever one it is which means collapsing the backrest against the seat. I can also push the armrest into its resting spot. But despite having two big red levers, I cannot get it to shuffle against the window.

Anyone have one and know the secret?

Wednesday 21 November 2012

Introducing Lotty

She took her own sweet time to join our family, but I think she'll be taking part in everything she can as soon as possible.

We spent the afternoon together, and I think we are developing a reasonable understanding. She has quite an appetite; £92 only just filled her up. But I can see how much we will appreciate her.


Tuesday 20 November 2012

Picture of comfort.

New chair, new hand splint, and a peaceful evening at Helen House without her little sister's chatter. The promise of sparkly nail varnish; a little cruel perhaps considering she is currently being cared for by the only man on the care team, but I'm told not to dissuade her from her request as the rest of the team need a laugh.


Monday 19 November 2012

New Chair

 So back in May, Mog had a wheelchair appointment at school. We discussed the fact that we aren't going to go for spinal surgery, agreed that probably three monthly reviews would be a good idea, and made an appointment to be seen at the wheelchair clinic in June, with a view to sorting out a more comfortable chair.

And we turned up in June, and discussed the options, and agreed that she didn't need some of the features her current chair had, which would free up space for some other features which she could do with.

We agreed on a model of wheelchair, made plans to come back to have the seat cushions moulded, possibly before the end of term but more likely August, and went away, dreaming dreams of this amazingly comfy new chair.

And then the appointment came through for the start of September, and I was annoyed, but not really surprised.

And then the appointment in September was cancelled, two days beforehand, and we were given not one but three separate appointments in October, and told we must attend all three or else none of them.

And I was not amused.

So I phoned the wheelchair clinic and got stuck in the system, and finally spoke to someone who insisted that if we couldn't make the third date in October, we would have to have three entirely new dates in November and December. So I complained.

We then finally managed to achieve what I'd been trying to do in the first place, and had direct conversation with someone who actually had the power to sort things out for us. She explained why the September appointment had been cancelled (and it was for genuinely understandable and entirely unavoidable reasons - had this been mentioned or had the cancellation letter at least begun with an apology, I would have been significantly less annoyed about this), and promised faithfully that Mog would not have to wait until December for her new wheelchair.

Further communication followed, and we were able to keep the first two appointments in October, without being expected to commute back from Florida for the third. Still not ideal, considering the fact that the need for a new chair had been agreed back in May, but best we could get at this point. So hurrah. Ish.

We came to the first appointment, and discovered we wouldn't be getting the original model of chair discussed, but instead a new version of the Chunc.Now the Chunc is to my mind the Marmite of wheelchairs; you either love it or you hate it. It most closely resembles a bit of Meccano; bolts and slidy bits and, well, to my blinkered vision it just looks like the kind of chair particularly suited to twelve year old boys. I know friends love it, and they're not all weird, so there must be something in it. But I don't. I liked Mog's Discovery, and I'd become used to the look of the chair I thought we were getting. However, there were excellent reasons why they were now recommending this chair (Chunc Recline with custom seating for the wheelchair techies out there), so  we went along with it.

Meanwhile, thanks to the delay, not only were we getting a different base, but Mog's Botox appointment had come through, so we were getting a slightly different body posture, with the possibility of bringing her arm down. So perhaps the delay wasn't a dreadful thing after all. We were also able to go to Florida with the old chair and not worry too much if it met with a dreadful accident midair.

Finally, last week, the chair itself turned up. Excuse the black headrest; I'm told a navy one is on its way.

 Note extended sweep to stop her arm from falling off and upwards. Ignore the shape of the back; we're all good at that round here.
 Rejoice with us over a) a sensible suction pump tray with clips to hold it all in place. And b) the bag which came with it, which is large enough to hold all the stuff we had in three separate bags previously, without feeling crammed. And kindly ignore the slight design flaw which has the brake controls inside the wheels, neatly blocked by the suction pump. Who needs brakes anyway?
 It tips back. A long way back, and the design means it doesn't foul the suction pump tray, and the handles aren't too low to push, even when fully tilted.
 It also reclines. A long way.
 We'll ignore the fact that if I recline it more than this, with everything we have on the back, it falls over. And concentrate on the fact that there are anti tip levers, should I wish to use them.

It bounces. Friends tell me this is gentler on their children than non bouncing, and I have no reason to disbelieve them. I just hope it doesn't make her seasick. And I do have to eat my words; it is supremely easy to push, very easy to turn around, despite being longer than her previous chair. Oh, and her switch can now mount in such a way that it moves with the angle of the chair, remaining within reach no matter what, rather than having to  be readjusted every time we tweak her position.
And she just looks comfortable in it. What's that you say? Wrong child? Yes; sorry; I keep forgetting to take the photos, and tLP was getting cross because I was wasting important cuddling time by photographing an empty wheelchair.

The footrest is padded and easily adjustable. The cats have adopted it as their overnight bed. The clamping points at the front are almost big enough to compensate for the awkwardness of the clamping points at the back - it is at least easier to scrabble around at the back of a chair to get things fixed rather than at the front. And it does, just, fit in our bus.

I can see that it is well designed. It does the job it's supposed to do, and I think it probably does it well. I still think it's an ugly beast; but I'm sure I'll grow to love it the more I see Miss Mog inside it.



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