Sunday, 31 May 2009

One for the physios.

Can anyone tell me why this child, who cries each morning if we forget omit to put on her Hensinger Collar when she is sitting up, can manage this?
For two hours?
And love it, and not drop her head once?

Surely it must be harder to hold your head up when prone than when upright?

Peverse child.
Tia

Nine

Nine years ago today, Goldie moved out of her respite home and into our family. At eleven, she was just about small enough that I could carry her on my hip (short distances only!). Once she realised cuddles were allowed, she clung on like a limpet as we got to know each other better.

After a perfect attendance record at school, she decided home life was good, and despite her profound disabilities developed the ability to fake illnesses. Time and time again I'd get a call to collect her, limp and sorrowful, from the classroom, only to have her bouncing off the walls as soon as we got home. She blew her cover one day by not even waiting until we were safely in the bus. Instead, she started singing as I pushed her down the corridor, running straight into the head teacher. We bought the class staff a thermometer after that; if it showed a fever I'd come and collect her, otherwise they'd tell her "nice try" and she'd have to sit it out.

She shot up those first few months, filled out, and lost her little Orphan Annie looks. Not that there was anything at all wrong with the care she was receiving where she had been living - it was just that capital H thing. There's a world of difference between A Home and home. She was finally home, and she seemed to know it straight away. Even during our introductions she would start shouting when the care staff turned up to take her back.

She wasn't the easiest child to live with, but she was definitely very easy to love. Her needs were relatively simple - her stories, her music, her structure and keep it coming. Once we her minions realised our place in her world then everything was wonderful. Try to pull Goldie out into the world the rest of us lived in and then you'd hit more problems. But she was always happy for people to enter hers.

Nine was Goldie's age in the first reports I read on her - she was eleven when she moved in.

And nine is Little Fish's nemesis - she can do four and six piece puzzles now, but the edgeless middle piece confuses her.

Tia

Saturday, 30 May 2009

Ten

Ten years ago this week, I had a phonecall from a social worker, a call I never thought I would hear. "We've found a house, are you still interested in fostering?"

Rewind a little.

Fourteen years ago I hit the magic age when I was finally old enough to adopt and foster. And shortly after that, I hit an immoveable wall of "you're too young/too inexperienced/too naive/too single/too recently ill/too unlike our ideas of what a foster or adoptive parent should be". Several years of talking to agencies, sometimes getting past the first stages, starting to talk about specific children, only to be faced with another "sorry but" door slamming firmly shut. And then, back in November 1998, I had had enough. This time it had been closer. We'd been talking about an actual real child, a baby with a rapidly progressive condition and a very short life expectancy, who needed to leave hospital and experience home life before dying. And we started on the world's fastest fostering approval process. And then it happened; a more experienced (and already approved) fostercarer became available, the child went to that carer, and the urgency faded and all the problems which had been "I'm sure we can sort this out" became "oo I'm not sure what we'll do about that" again. And I told the social worker that was it, I couldn't do it any more, and the only way she would ever have me as a fostercarer was if she somehow solved the biggest stumbling block and found me a suitable house.

I went back to work, applied for a promotion, started a distance learning course, cancelled subscriptions to my adoption magazine, shelved fostering as a dream.

And then, out of the blue, the phone call. Was I still interested? Would I come and look at this house, and how quickly could we get the fostering application sorted out?

The story behind the house varies a little according to who is telling it, but this is the version as I understood it, ten years ago. The house belongs to a housing association - formerly Christ's Hospital but since sold on. The previous tenant had died. An elderly woman, the house had been partially adapted with a through-floor lift giving her limited access to parts of the upstairs. She had lived the past ten years in two rooms - the sitting room downstairs and her bedroom upstairs.

On her death, the housing association had hunted for other tenants waiting for an adapted house. And had found none - the house not being suitable for an independent disabled person, and not being popular with families with active children due to its location. So, they were in the process of arranging for the lift to be taken out and the various holes in the floor to be repaired. They made a phone call to adult social services, to see if anyone would be interested in a secondhand lift. My social worker happened to overhear, or perhaps the person they spoke to knew she was looking for an adapted house, or perhaps the messages she had left with different people did finally get through in the nick of time. However it happened, she became aware of the fact this house was empty and adapted, and remembered me.

She called the housing association and asked them to hold off on removing the lift. She called me to check I was still interested. Together, we went to see the house, to assess its suitability. And I signed a lease, conditional on my approval as a fostercarer.

We spent the next few months completing the form F (homestudy). As I plodded through work, which was going through some major changes and adjustments, she raced around visiting my referees, filling out the necessary paperwork, sizing up potential fosterchildren. And then the forms were filled in and submitted to panel, there was no panel in August, and so we waited for the beginning of September.

I was approved on the 3rd of September 1999, and my first foster child moved in the following day. Respite care; I was then working my notice up in Cambridgeshire, so I spent weekends fostering, then dropped the child off at one end of the county before driving in the opposite direction back to work. Days off inbetween spent driving home to paint and decorate and rid the house of the smell of incontinent old lady - an impossible task as it turned out, eventually the housing association removed the offensive floorboards and replaced them with ones which were not saturated in stale urine.

Eventually my notice period ended and I settled down. My first fosterchild was most disappointed when our new cooker arrived; he had assumed I was cooking on a Trangia through choice. Friends, family, and social workers combined to help furnish the house, and then a grant came through to complete the adaptations and make the place more suitable for physically dependent children. It felt as though that process took forever, but considering we moved in properly in September it can't have been that long, as in May 2000, nine years ago, my approval changed from respite and short term care to long term fostering, and my Goldie moved in, a small, thin eleven year old with wild, wild hair and a wicked grin.

She was my first girl; in the six months before her arrival I'd had four very different boys. The computer genius, the potato masher lover, the kite runner, and the physio king.

Ten years since the door to fostering finally opened. And ten children fostered in those ten years. It's not a huge number; I've fostering friends who have taken forty or more children in that same time period. But it it's enough for me. For now at least...

Tia

Friday, 29 May 2009

First adolescence

I have a vague memory of reading something somewhere in the dim and distant past which suggested that toddlerhood is in fact the first adolescence. Whilst Little Fish is probably a little old to get away with the toddler label, I'm thinking I definitely got a glimpse of her teenage years today.

We went shopping. In the first shop we entered, Little Fish zoomed around in her powerchair, zipping in and out of the racks of clothing, popping up behind me and demanding "Wot you doin', Mumma?". I showed her some Tshirts and she told me "No Mummy that not your style. That is a bit girl you a mummy." Thanks kiddo!

Cue collapse of every shopper within earshot (and, for the record, I don't think I am too young for a nice frilly t-shirt with a lacey edge to it, and I would have overruled her, but it was a little lower cut than I was expecting). Steering Mog, I made for the exit with Little Fish shouting out about how I hadn't paid. I did try to point out I hadn't bought anything, but she wasn't convinced. Thankfully the shop assistants were...

Onwards and into the next shop. A smarter shop, slightly more expensive. "How about this one, Little Fish?"

"
That might fit you. Might suit you. Not that one. No that one too young. This is a good one".

We retired to the changing roms (thankfully not communal) with two tshirts and a pair of trousers.
Pulled on first Tshirt. "What do you think Little Fish? Does it fit?"

"Yes it does fit you".

"Oh good, so shall we get it?"

"No it is not look good on you".

Great. My four year old style guru has spoken. I pulled on the second tshirt, ignoring the stifled giggling coming from the other cubicles. "How about this one?"

"Yes that is good that is you style Mumma".

"OK Shall we get it then?"

"Yes but you need to pay Mummy". I'm not sure whether she thought I was planning to shoplift or use her pocket money, but either way it was a cheap laugh for the women in the other cubicles once more. I didn't try on the trousers; couldn't face it.

Out of the changing rooms and over to the tills. I thought my ordeal might have been over, but Little Fish insisted on holding the tshirt and handing it over to the assistant all by herself. This would have been substantially easier had there not been three other women already in the middle of paying, as well as a shop mannequin precariously perched on a narrow plinth just that little bit too close to the till. I caught it, no harm done. And the assistant reached over for the tshirt asking "Is that for me?"

"NO, it is for MY MUMMY it is NOT yours you am not 'aving it."

Mog, sensibly, opted out of this whole procedure by hiding behind her sunglasses and pretending to be asleep.

We left, with the tshirt and a receipt just incase anyone was in any doubt about our having paid for it. And walked across to Waitrose, where apparently we were joined by most of the women who had been in the other cubicles. I think that's why we got so many knowing glances as Little Fish trundled up and down the aisles saying "Now THEN. We need Bags oh 'uRRAY BAGS 'ere Mummy you get the bags I show you" and other delights.

Tomorrow we're off to Reading to find some things for Mog. If I leave the air conditioning running, I can leave Little Fish in the bus all day can't I?
Tia

Dear Newish Member of the Team

Welcome.

It is good to have someone new on board. Thank you for choosing to come alongside families like ours. I am sure you must be good at your job - you wouldn't have been chosen to come and work here otherwise.

I know that a large part of your job is supporting families - my family and others - who have children with complex health needs. I'd like to explore what is meant by support. Whether or not you are doing this intentionally, your interpretation of this comes across as aggressive pity (a combination I didn't know existed until we met you!). I don't need pity - none of us need pity. I love this life, I love my girls and they are the light of my life, they bring meaning to my day and joy to my soul.

That doesn't mean it's always easy. Of course it isn't! But could you please wait to see how I am feeling on any particular day before jumping in with a sideways sympathetic head tilt and telling me I must be so tired? In fact, could you please not tilt your head sideways in a sympathetic "you're so brave" smile at all? It's very annoying, and it gives me a crick in my neck when I try to meet your eyes.

I'm not brave, and I'm not special.

My girls are, although I don't tend to make a habit of telling them that very much either.

Whilst we're talking about the girls though, both girls have pretty decent understanding. They don't need to hear me being told how difficult they must make my life, how hard it must be to care for them, how awful it must be to have to deal with the things their disabilities throw at me. They hear that all day long from bus drivers, from doctors at hospital appointments, from random strangers in the street. They really don't need to hear that again when we turn up at support groups and social events. And they certainly don't need to be made to feel that they are a burden or a torment. Why should they have to hear their mother being pitied for parenting them? No one pities them for having me as a mother; in fact when people do talk to them, they tell them how lucky their are to have me. Have you ever met a child who considers themselves lucky to have the parents they have?

Oh - and small side note whilst we're on the topic of mothers; I am the girls' Mum. I am the "real" parent - the one who puts them to bed and gets up to them in the night and kisses them in the morning and packs lunch. If you must inquire about their other parents the term "biological", "birth" "first" or "other" would be better than "real" or "natural". I am neither unreal nor unnatural. Or at least, I like to think I'm not.

The trouble with your pity and your constant sympathy, whether or not you've stopped to think about if that's actually what I need at that moment in time, is that it leaves me nowhere to go but into relentlessly cheerful mode. I don't like being relentlessly cheerful - it's exhausting. And I'm often running low on sleep as it is. I don't mention that in order for you to tell me how awful that must be, or to marvel at how wonderful I am to cope so amazingly well, I mention it as a factor in how angry I might get with you next time our paths cross.

Please relax. Forget your preconceptions about how you might feel if you were in my situation. Actually, forget how you have felt when you have been in my situation. Just sit back a minute, and see how I am doing myself. Most of the time, what I need from your service is practical help, supplies, advice, perhaps a pair of hands. What emotional support I do need I will usually get from my friends. Obviously, if I turn up in tears, you have my permission to be sympathetic! But please don't try to push my conversation into areas which might bring them on. It's not what I need and it's not what I like. This life is for living, and the vast majority of the time I like to get on with doing just that. And so do the girls.

I'm sure that once you have learnt how to do that we will get along just fine. Thanks for listening,
Tia

Thursday, 28 May 2009

Doors

Does anyone know this man? He turned up on the doorstep on Tuesday morning, and told me he had come to paint our front door. I said I didn't know anything about that, and he informed me it was on his works sheet, so it needed to be done. I pointed out that we don't rent our house, and he pointed to my house number on his little sheet of paper, and insisted it was in my contract. I was reasonably certain doors were specifically excluded from my contract; he asked me to close the door, so, thinking that he was going off to check, I did so and sat back down again.

Ten minutes later, the door was opened, he painted the sills, and told me to leave the door wedged open "for an hour or so" to let the paint dry. As our carer left at eight o'clock, she tested the paint and laughingly offered to come back in the morning armed with a razor blade and a battering ram to open the door. As I went to bed at eleven I pulled the still tacky door to, and hoped for the best.

It rained yesterday, the door held up to this fairly well, and most of the newly mown grass which had blown onto the sticky paint washed off again.

I took this photo at half past eight this morning. I just happened to be walking down the hallway when I realised our random painter was back. Ten minutes later he pushed the door open, painted the sill again, and walked away. Warned by the many dischuffed visitors on Tuesday, I put a sign up this time. It's nine o'clock now and the paint is still wet.

Don't get me wrong - I'm not unhappy that someone has painted my door. I expect I'll get a bill from it somewhere, when the people at the housing association realise that the house isn't rented, or possibly when they realise their painter visited the wrong street. But it's a job which is about two years overdue, so it has at least saved me the effort of finding someone to do it. I am however a little annoyed that he went ahead and did it even after I told him not to, and that for the two finest days this week we've been trapped inside the house watching paint dry.

We didn't make it to church on Sunday; the extra care needed for Little Fish made us late. And it was nice, very nice, to sit around at home and enjoy just being home, just us, without our previous week's audience. We enjoyed our garden on Monday rather than going elsewhere. Tied to the house unexpectedly today and Tuesday, and a wet wet day yesterday means that we've not actually left the house properly since we got home last Saturday. Tomorrow I plan to escape with both girls first thing in the morning before anyone can phone and arrange to see us.

It's been a very phone-centric day today. Appointments to be arranged and rearranged, medicines to sort out, and a phonecall from the health visitor wanting to know how I was coping. She caught me at a bad moment - third person in a row to ring as I was trying to feed a child. Apparently it is now policy for the health visitors to phone the house every time they get a letter from hospital about a child on their books. It doesn't matter whether the parents want the HV to phone or not, "this is a service we offer so that someone is there for you". It doesn't apparently matter if the parent has 23 other professionals plus a raft of friends who can be "there for you"; this is now the role of the health visitor. I did request that this stopped - we can average three hospital visits a week; I do not need a kind caring stranger asking me how I'm coping after each one. I hope she takes my stroppiness with her call as a sign that I am coping just fine thanks, and not as a sign that I need even more concerned caring phonecalls.

And then a phonecall in the middle of the girls' bedtime confirming that the Wahooligan will not be coming back to us. I'm very pleased that he is where he is; I am absolutely convinced that it is the very best place for him to be. We'll miss him though. And more importantly than my own feelings, the fact that he won't be returning has made a liar of me to my child. Little Fish waved goodbye to him two weeks ago as she went into preschool, and he had gone when she came home. I told her he would be back. If I'd known this was a possibility, I'd have made sure she she was here when he had left, and I'd not have told her that. She's not too fussed at the moment; she knows where he is and she sees his things still by his bed. But I'm not so sure she'll be as happy when the rest of his stuff goes, and she will remember that I told her he'd be home again.

That's how it goes with fostering, I suppose. Here one day and gone the next. Or here one day and stay forever, and the forever bit was never an option for the Wahooligan. I hope he's not the last fosling we have though; it was never my intention to stop fostering forever, so maybe there will be someone else in that cot one day? I know we'd all enjoy that.

Tia

Wednesday, 27 May 2009

1,2,3,4, I declare camera war!

What do you get when two small children find a digital camera and a camera phone?
Chaos.
Utter
chaos.
That's what!I think they had fun though!

Tuesday, 26 May 2009

A Mog Blog


Because it's about time she had her own entry.

We've been busy these past few weeks. A Wahooligan to entertain us, a holiday, a hospital and hospice stay, meetings and phonecalls and visits, parties and playdates and well, you get the idea.

And through it all, Mog has sat in her chair. Sometimes watching, sometimes sleeping, sometimes joining in. And always waiting until the smaller ones have gone to bed before having a cuddle and a snuggle and a song.

She's outgrown her wheelchair. We knew this in January, but somehow agreed to wait. Now suddenly it's nearly the end of May, she's grown another couple of inches, and the need is becoming urgent. We're still waiting for that appointment. Meanwhile she perches on the edge, or uses her buggy, or, as today, is content to watch the activities of the day from her armchair.

Mog has had eight nights at the hospice - the longest stay there she's ever had. For four of those nights, I was there too - but I step back from her care when we stay together. I get the cuddles and the smiles and the punching me on the shoulder when I don't drip coffee into her mouth fast enough, and her carers and nurses there get the poo. I have no complaints.

But after eight nights off, I am seeing her with new eyes. Mog is very definitely racing through puberty now. And she's six. This is disconcerting. Much of her development is disguised under several layers of pads and clothing, staps and collars. The fine crop of acne she seems to be developing is a little harder to escape. She still has baby soft cheeks - how can these be sprouting spots? We've still not taken her for her first ever haircut - am I really going to need to shop for her first bra? Not today or later this week, but it won't be far off if she carries on like this. She has shot up in height and none of her summer trousers fit; thankfully this is something she considers to be a good thing, as it means we need to go shopping.

I've been watching her these past few days. And she is tired. She wakes up at around half past six, listens to some music, gets up, has a sleep in her chair until her little sister clatters into her or drops her toast dish. And then she fits for a bit, and sings for a few minutes, and then she goes back to sleep again. Today she has spent at least four hours of the day sleeping, for ten minutes or for two hours. She isn't fitting when she's asleep, and I suppose that's a good thing. But not great.

I started to say it isn't great when compared to this time last year. But then I took the time to read through last May, and I realised she was quite ill quite often then too. And in June. So maybe she is just always tired, always sleepy, always twitchy, and I somehow filter this out of my consciousness. Which would be comforting I suppose, except that she definitely woke up last summer for a while when we took her off her Vigabatrin. Unfortunately the seizures also woke up, and much as I hate to see her sleep her life away I do prefer that to the fits. Anti-epileptic drugs have a lot to answer for though; since she started on the Epilim her arm hairs have grown until they're an inch long in places, and I can nearly plait her legs to match her head. Since shaving a six year old has never featured highly on my list of things to do before I'm forty, and shaving a six year old with unpredictable myoclonic jerks has held an even lower place, she's just going to have to live with it. Long sleeves, long skirts; she can develop modesty instead.

I don't suppose there's any chance early puberty might make her a shorter adult is there? If she is going to have to deal with teenage hormones she might as well have some advantages from it. And whatever you think of Ashley X (or rather, her parents and her medical staff), staying small enough to be lifted does have advantages when you can't walk, stand, or sit up by yourself. Just for the record, I'm not advocating we put Mog through the "Ashley treatment"; I have no interest in keeping Mog as some kind of eternal child. I look forwards to seeing her grow into a beautiful young woman. I'd just quite like it if she weren't quite this far down the road a month before her 7th birthday. But there we are, she is, whether from her seizures or her other disabilities, or the many meds she takes to control them, or perhaps hormones in her milk, or any one of a thousand different reasons, she's growing out of little girlhood and into little womanhood. And the if the difference after just a week is noticeable, then I'm guessing the difference in the next few months will be impressive too. Perhaps it's just as well we haven't recast her wheelchair yet; we'll need to be sure there is room for growth and adjustability in the harness.

Tia

Monday, 25 May 2009

Practical Parenting?

I had a garden last year. It was beautiful. Young, not perfect, but a lovely place to slip out to in the early morning before the girls were awake, and a peaceful spot to sit in once they were settled at night. And an excellent spot to eat lunch in and not have to worry about crumbs.

I had plans this year. And good intentions. A spot of early pruning (thanks, Dad), some early spring planting (thanks, Grannie), and some vaguely defined plans. And then it rained. And then the Wahooligan came, and life got busy, and then we went on holiday, and then the Wahooligan returned, and suddenly my lawn was 4 foot high in places and the thought of doing anything to it was a little overwhelming and definitely not a priority.

And then along came Mum with their superduper lawn mower, and we went from this
to thisand from this

and this
to this

Thanks Mum! And thanks, Dad, for strimming too.

It's a long way off perfect or even good enough yet. There's hours of weeding to do, and a fair bit of planting up too. But it's manageable now, and that's what we needed.

A gardening question - why has my apple tree not blossomed yet?

A gardening note: throwing mouldy and sprouting vegetables into the compost bin and then letting the wind blow the lid off and let the elements in has its good points - we now have a crop of potatoes and celery blooming nicely in the compost bin. This is not wholly good though - we now have a large and growing mound of compost where the mint used to be (self seeded, beside the compost bin), in order not to suffocate the potato plant. It's all very well saying leave it undisturbed until September, but...

And in unrelated news, Little Fish has today been practicing her quiet voice very happily, and ate three pieces of asparagus for tea. Hurrah.
Tia

Sunday, 24 May 2009

Dear Little Fish,

Dear Little Fish,

Wearing a brace does mean you can't swim, shower, bathe, sit upright, have waterfights or play in the sandpit. I'm sorry, I'm really sorry, but that's just the way it is. Six weeks feels like an eternity I know, but it could have been three months, so let's look on the bright side hey?

Undoing the straps and wriggling your hips out of shape will not help your recovery. If you keep doing that you might damage the joint which has just been rebuilt, and might have to go through all this all over again. Please stop. I do have gaffer tape and I'm not afraid to use it. I won't be able to change the liner if I do though, so please just desist.

Wearing a brace does indeed mean you can't lean over to pick things up from the floor. I'm sorry, but that does not turn me into your personal slave. You throw your toys, you survive without them. You throw my computer, you get to sit in a different room and be even more bored.

Wearing a brace does not mean you are unable to eat vegetables. It does not mean your hair doesn't need brushing. It does not make you incapable of using the words please and thank you.

I know there aren't many upsides to wearing a brace. I know that right now it's hot and uncomfortable and restrictive and frustrating, mixed in with a little bit of unidentifiable pain. I know that for the last week, you've had willing servants in hospital and at the hospice, people running after you and being totally captivated by your cheeky grin and imperious demands. That was fun while it lasted, but we're back home now. I really wish I could make this easier for you. But "Get here NOW" and "DO IT" and "AAAAAAHHHHHHHHHH" have never really worked as motivators for me, and they are unlikely to be effective now.

So here's a deal for you. You find your gentle voice again, and I will do my best to find plenty of things you can do whilst lying back in your wheelchair. You remember how to talk nicely and eat politely, and I'll find some meals which are "not yucky" for you. You practice driving that powerchair, and I'll find places we can go to where you will have space to move around.

And those weeks will pass. We're one down already. Just this week of half term, and then you will have plenty of time to be busy at school and preschool again.

I'm sorry that I told you your legs would be the same length after your operation when that turned out not to be true. I'm sorry you will still have a short left leg. I'm really sorry that you are hurting now when you weren't immediately post op. I'm sorry that no one noticed your brace had worked loose on Friday, and I'm sorry that we had to make you lie still until we could get someone to fix it. I know you've had a rotten time, but you've also been having plenty of fun you know, it hasn't all been miserable. And it won't all be miserable for the next few weeks either. So let's settle down back into our regular daily life shall we? Let's get on with things as they are and make the best of them. It won't be forever.

So, starting from tomorrow, could you please remember that "I can't, I got my brace on" is not an acceptable answer to "eat your peas, please" any more than it is to "hang on a minute", and that "AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA" is never an acceptable way of saying "help me please"?

Please?
Tia

Thursday, 21 May 2009

Tea at three

We had a tea party at Helen House this afternoon. No scones with
clotted cream, sadly, but we just about made do with the piles of
other cakes and biscuits. Gentle music playing, happy conversation,
and children in powered wheelchairs playing croquet on the lawn. Oh,
and the photographer from the Oxford Mail.

Tea at three is one of this year's Helen House fundraisers. Throw a
tea party, invite friends, charge them. Simple enough - everyone gets
cake and a drink, and Helen House get a bit more money towards the
cost of our care.

Hospice care is not funded by the NHS or by Social Services; Nor do
the patients' families pay. Every penny comes from donations. We're
staying here now to give Little Fish a break from being in hospital,
and so that I can recharge my own batteries before jumping back into
our daily life with LFs additional needs. Mog has been here for a
week; this hospice is the only place where I can feel confident enough
to leave her overnight, knowing that the staff recognize and can cope
with all her special needs.

That's this stay. Helen House have taken care of my girls so I can do
things by myself at times. They have taken one child so I can focus on
the other. When Goldie died they took us all for a couple of days, a
pause before taking up the reins again, a chance to breathe with chaos
all around us. And if and when the time comes, I know they will
support us through the death of one of my remaining girls.

Helen House do more than just care. As I left the house this evening
to come over to my flat, I paused to watch a child have a late night
spa. Yesterday one child had a private movie screening whilst another
couple enjoyed their favourite meals. Croquet today; another day
aromatherapy and music therapy fill the corridors with a gently
relaxing multisensory feast.

For myself, this is a chance to enjoy just being Mummy, not having to
be nurse and carer and therapist. Medicines and feeds are brought in
and administered, treatments are carried out, and I can be elsewhere
entirely if I wish, or present but off duty. Tonight Mog is hooked up
to a sleep study; if this had taken place in hospital I would have had
to spend the night by her side. As it is, I have said goodnight to
her, and l have crossed over the road to my flat. I can reach the
girls in seconds if necessary, but I can be confident that they are in
safe hands, cared for and loved whilst I sleep.

One more quiet day tomorrow and then time to step back into reality. I
love this life we have together, but there's no denying it can be
difficult at times. Knowing that we can book ourselves another break
here in a few months' time makes it that much easier to pick up those
extra roles again.

Tia

Lazy afternoons

Two girls each with two staff to keep them happy and busy. What's a
Tia to do?

Tuesday, 19 May 2009

Aaand relax

Despite the hospital's best efforts, which eventually included sending
our drugs down to pharmacy to be relabelled (incorrectly), and
cunningly inviting drivers to double park behind us so we had to
bounce and jump to get out of the carpark (always an adventure but
even more so with shiny new bus), and despite said shiny bus' own
attempts to foil us by eating the car keys refusing to stow the lift,
and not allowing me to shut the doors, we did eventually manage to
leave hospital and squeak into Helen House before the doctor left.

Little Fish has a uti, Mog has a sore still, but I think they were
pleased to see each other. Decent sensible staff on duty who took over
calmly and competently, leaving me to take a bath and do some washing.
Now the girls are snuggled up in the main house, and I am over the
road savoyring the peace and the luxury of a room to myself.

Night all
Tia

Operation Discharge

Operation discharge has begun. The doctor has been to visit, and decreed that Little Fish's xray yesterday was insufficient. So we need to do that again. And wait for the smaller brace to be delivered. "And that's it".

Right, so everything else has been done then?
Apparently so, there's just the tiny matter of a discharge letter, a drugs chart and some nursing notes but they will be done.

Ok, so we need various letters to be wriiten by various people, an xray and a new brace, and then we will be fit to go?
Yes. The physio is visiting later too with some exercises and a piece of padding.

So that's letters, xray, brace, physio, and then we're free to go?
That's right. Oh, and the other doctor needs to see you.

You know we have to be at the hospice for 2.30 as their doctor leaves then?
Yes yes, it should all be done by then. But it's ok if not; you can just stay another night.

But we don't want to stay another night.
Yes hmmm have today's menus and you'd better order tea as well as lunch. Sorry got to run now.

I want to go...

Monday, 18 May 2009

Pincushion

No photo today. Squeamish readers will be relieved. Little Fish now has 12 holes in one foot and 9 in the other. There are bloodstains on the curtains, on the doctors' trousers and the floor. Little scabs and driblets of dried blood sit at intervals along LF's feet, tracking her veins and marking valiant attempts to extract blood. 1.5mls of the red stuff now sits in two test tubes. Enough for the test she really doesn't need, and for the test she probably doesn't need. But insufficient for the test we all thought probably was a good idea.

Aside from the mystery fevers and now the new matter of the beautiful intense body rash, both of which can possibly be explained by the thick layer of sheepskin lining the body brace, she is doing really well. All set for discharge to hospice tomorrow. Strict orders for no o2 tonight, and a different mask for her Nippy, mean her sats are sitting nicely at 100 with occasional dips to 98, rather than her adventures in the 70s from the past few nights. We like. This set is being recorded too; it'll make me look silly for pointing out that 5 litres of 02 every night wasn't the best thing to need on discharge, but I'd rather look silly and have to do a spot of sewing chin straps onto masks than have a floppy grotty child. At least, I think I would...

Hospice tomorrow and a reunion with Mog, I can't wait. LF is rather excited about the prospect of being able to leave her room. I'm excited about the ability to make myself coffee whenever I feel like it, and I'm also quite keen on the idea of typing on a decent keyboard not a touch screen at last. Now though, LF is asleep and I'm looking forwards to a night without the constant beeping of a worried sats monitor. It's much happier tonight.

Tia

Tia

Sunday, 17 May 2009

And I shall thcweam and thcweam and thcweam until I am thick

The breakfast trolley missed our room this morning. Little Fish was
not impressed. Happily, a nurse made her some toast, which turned her
grumbles into this.

Meanwhile we are on the move to the ward next door. Except we might
not be. And then we definitely are, and so I pack our lives into our
bags. And now we aren't again as someone from picu has moved instead.
Except we may move at bedtime. Not wonderful for a child who wants to
know exactly what's happening all the time, but hey ho.

LF continues to run a temperature, although her bloods have come back
clear. She's possibly having a problem with her wee but hopefully a
blip rather than an issue. Her biggest stress this morning was not the
cathing, not the rolling, not the cleaning and washing and forced
removal of the manky upsy daisy pyjama top she's been welded to since
Friday, not even the missing breakfast (although that came a close
second), but the evil hairbrushing torture. If that's the worst thing
we've done to her in the past few days I think she's not that badly
done by! Sadly she did indeed scream herself sick so has now lost the
toast she sobbed so hard for earlier...

Tia

Saturday, 16 May 2009

The biggest brace in the world

Our surgeon was not overimpressed with the measurers. And a smaller
one is now on order. Meanwhile, Little Fish got to try out the
wheelchair she'll be borrowing for the next six weeks. Even without
the difficulties seeing over the top of it she can't reach the wheels,
so getting around is going to be interesting for the next few weeks.
Her powerchair has been semi adapted, but I need a set of Allen keys
to fix it safely enough to satisfy the hospital OT.

Little Fish had a nap earlier, and so I slipped downstairs in search
of coffee. I bought her a magazine at the same time, and came back to
give her a present. "Why you got me a present, Mummy? It my Birthday?"
I explained that it was a present for being so patient and helping the
doctors even when they were doing things she didn't like. "Oh sank you
werry much Mumma".

And then I sat back feeling smugly pleased that I have raised a child
who does not expect constant presents and who wouldn't dream of using
a mere hospital stay to wheedle gifts from her guilty mother. Alas, my
smugness lasted approximately 87 minute 34 seconds. "I finished this
one now you got another present for me Mumma I big brave girl for
you." Ah well, it was fun while it lasted.

Tia

Friday, 15 May 2009

Hip op hurray

Arrive at hospital and head to Robin's ward. Sent back down to
Outpatients. And from there to Tom's. Sit outside Tom's for an hour
before finally being sent to Robin's...

And then hustle hustle magic cream and consultations, a quick go with
some playdough before wrestling a small child to sleep.

And now 4 hours later she's not in pain, she's eaten a bowl of cheese
and had a cup of water, she's watching her video and her greatest
annoyance is the fact that people keep interrupting her to check she
really really isn't in any pain. I guess there are times when being
naturally anaesthetic really does pay off!

Surgery all went well. She needed blood and may need more tomorrow but
she is so far amazing everyone with her general wellness.

Picture is 1 hour post op!
Tia

Thursday, 14 May 2009

Au Revoir, Renault

video
We decided to make the most of Little Fish's last chance to get wet for a few months.

I think the chap who turned up with our new van was impressed!
We like the new van. We like it lots. Although we still can't clamp LF's power chair in properly - anyone know a restraint system which has carribinas at the front and not at the back? Or should we just clamp her in rear facing?

Tia

There must be somewhere something I do not need to do today

3 tube feeds
3 sets of meds
3 children dressed
Mog to school
Little Fish to preschool with packed lunch and meds
Wahooligan's kit packed ready for respite
Mog's kit packed ready for hospice

Pay milk bill, cancel milk for next week
Goway to Cattery
Laundry mountain conquered
Find cheque book
Over to the hospice to fill in all Mog's paperwork ready for tomorrow

Wahooligan handed over to respite carers
Little Fish packed for hospital

Yours truly packed for hospital
Old van emptied and cleaned
Fix intermittent Internet problem
Find phone charger
Mog to Rainbows
New van received
Money from bank for van and for next week
Meds from the chemist for hospital and hospice
Collect Little Fish from preschool
Last bath for LF for three months
House into a more respectable state
Eat,
sleep, and drink coffee
Breathe

Tia

Wednesday, 13 May 2009

Tuesday, 12 May 2009

Always learning

You learn something new every day. So here's a few of the things I've learnt these past few days.

I have learnt that you can't put pullover pyjamas on a small child when small child is hooked up to oxygen.

I am used to walking out and about with children who have NG tubes. But the sympathetic head tilt and "you're so brave/such a shame/is it cancer?" looks and comments we get when out and about multiply ridiculously when the same child has an air hose slung around the neck and up the nose. Although, considering the amount of tape necessary to keep the cannulae in place it is possible some of these glances are just checking there is in fact a face under there somewhere. I am still learning the process of how exactly to react when the people we almost know (i.e. the people we meet on our daily school runs but never do more than say a quick hello in passing) start to say hello then suddenly become hugely busy with something on the other side of the road.

I have learnt that hell hath no fury like a woman whose daughter has managed to kick over the urine jug midway through the cathing process sending wee over the floor and down my trousers.

I have learnt that threading camels through the eyes of needles would be easy in comparison to trying to pick bogeys out of nostils already containing an NG tube and a nasal cannula.

I have learnt that it is not a good idea to put soluble prednisolone into a syringe, draw up water into the syringe and then shake the syringe violently. Although if I can get a good supply of pred I may consider this for future waterfights.

I have discovered that, however many phonecalls are made and received during the course of the day, there will always be one phonecall left to make which will only be remembered after 6PM. I am learning that this will be the same phonecall forgotton on Monday and Friday and Thursday.

On a similar note, I am reminded that, however many drugs you reorder from the GP there will be one mediction in particular which is constantly forgotten.

I have learnt that soaking the covers of Little Fish's chair in washing soda to get rid of the Weetabix, porridge and paint will cause the plastic coating to melt and puddle in one corner.

And apparently I still have not learnt that stacking paperwork on the windowsill and under the settee and behind the computer and beside the toaster is not the same thing as actually dealing with it.

Tia

Monday, 11 May 2009

Monday Monday

I could post a long and tedious post here about the many frustrations of the day. Little things like the postman delivering my neighbour's post, the new bus not being here, and the many many phonecalls we need to make. Bigger things like the sick child, Mog's new pressure sore, Little Fish's weeps at the discovery that the Wahooligan won't be coming to hospital with her when she has her op (strange child; not fussed about the operation but desperately worried that the Wahooligan will need her).

I could have a lovely long deep wallow in the pool of the poor pitiful meeeee. But ultimately it's boring to listen to and depressing to list.

So, instead, here's our list of good things from today.
  • I've just come back from Guides and didn't feel the need to shout at any of them for anything.
  • All three children are asleep.
  • Our bus is on its way, even if it's delayed.
  • The final bits of the care package for the other two are sorted so I really can just worry about Little Fish's op focus on Little Fish.
  • Our friends found out today they will definitely be able to come on holiday with us next month, so we will be spending a week together at the Wheelabout.
  • Our sitter was not phased by the idea of caring for a particularly sick child, brought her own iron with her, and left me with this as well as three sleeping children.
Fabulous!
Tia

Ponderings

If a feed pump is set to feed 250mls at a rate of 300mls per hour, why, after 50 minutes, has it only delivered 169mls?

If I have to take one child to the doctor's, why does that child immediately become the epitome of good health, and why does an entirely different child appear to be at death's door?

Why do medical devices need to alarm when they are switched on? I can see the point of alarming when there's a problem, I can see the point of alarming when they have finished the job they set out to do. But why do they need to alarm when you turn them on, when, presumably, you are standing in front of them pressing the on switch? The concentrator shrieks for five seconds - this is not fun in the middle of the night. The feed pumps beep loudly three times when they are switched on (and then beep incessantly when they have finished, when they are blocked, when they think they are empty because water is invisible, when the battery is wearing down despite having been on charge all night, etc.). The only machine which doesn't beep is the suction pump - and this is actually less useful than one might think, given that the only sign you have that the battery might be dying (other than a distressing lack of suction when suction is needed) is a very brief flicker of a red light, mostly hidden by the bag.

On Saturday we went to a certain large toy shop to replace some of the Wahooligan's broken toys. We came home with some acceptable replacements, something new which has been so far rejected, and more playdough for Little Fish (because although I hate it, she loves it). Mog decided she was a teenager and too cool for toys, and was not interested in any of it.

So yesterday, despite not being able to get to church, we should have been set with plenty of things to keep the next generation interested and active. Instead, the Wahooligan has spent much of the day chewing a piece of muslin, Mog has spent the day kicking anyone who comes near her, *and Little Fish has alternated whinging for biscuits with hoisting her babies
And inbetween persuading Little Fish that if Mog is kicking her, the sensible option would be to move out of range rather than sit still crying lots, and persuading the other two that coughing is useful and breathing has much to recommend it, I have been wrestling with the computer to write this; apparently my internet access is now rationed. I keep being allowed online just long enough to mostly upload one photo, before everything goes into error mode once more.

Is it bedtime yet?
Tia


* the photo is in focus; her foot is just seriously on the move.

Sunday, 10 May 2009

Really?

Does the word really need the instructions at the bottom of this page?

For those who can't read it, they are directions to tilt your head
sideways in order to read a number sideways. Which leads me to wonder
how many people phoned the company complaining about the strange
unrecogniseable numbers before the instructions were added. And then
to worry that I should perhaps put a "caution, water may be hot"
notice on my kettle. And then I wonder whether that is any worse than
the "caution: may cause drowsiness" warning on Mog's sedative.

I had a great long post but Internet has died again so you're stuck
with this snippet. Just call me Wonko.*

Tia

*points for reference. But points do not, in this instance, mean prizes.

Saturday, 9 May 2009

Just for RJK

She drops it here, she drops it there
She leaves great blobs of it everywhere
It's on her wheels and in her hair
And on the footplates of her chair

It keeps her quiet this I know
But I do still hate this vile playdough!Tia

Friday, 8 May 2009

Friday

Our new bus, promised "towards the end of the week", is not here yet. I suppose I should have checked which week.

After Wednesday's tooth debacle and Thursday's mass audience as we unloaded the bus, today we were back in school for Little Fish's Annual Review (IEP for my US friends). Only two children in the bus today; much better. No queues of people lining up to help us, so no audience when I tripped over Little Fish's power chair and sent myself sprawling across the carpark. Dignity preserved for once or would have been, had I resisted the urge to blog it.

An excellent meeting I think. Three schools, several dozen professionals, two rowdy children and myself, and everyone working towards the same thing - a smooth and safe transition into mainstream for Little Fish with all the support she'll need in order to make the most of it. It is such a pleasure to have people ask "what do you need?" and then agree to it without quibbling. And if attitude is enough to make it work, then LF will be having a great time next year.

Straight into the next meeting; risk assessments for Mog's transport. Never again will she be 50 minutes on a bus with untrained staff. In theory...

Tia

Thursday, 7 May 2009

Better things

Because it isn't all doom and gloom all the time, I thought I ought to mention some of the better things we have going on here right now.

A biggie - all care seems to be sorted for all the children whilst Little Fish has her hip op. She'll be able to drive her power chair and our new bus will be here so there will be enough room for us all to get out and about. Mog and the Wahooligan will both be having good times in different places leaving me free to concentrate on Little Fish. So now we just need to pray the operation goes ahead as planned and no one decides to cancel at the last minute. Empty beds please!

Smaller perhaps but big to me still. My sitter caught sight of this as she dug us out of our pit did a spot of tidying up last night.
And when I got home, she asked me if I'd mind leaving her all my ironing to do. Apparently she loves ironing and it would make her very happy. Since I hate ironing, it would make me very happy too. All round happiness always good.

I gave up on ever getting to Tesco this month; I haven't managed to do a proper shop since March and Budgens doesn't cut it after a while. So yesterday I finally organised my way through an online shop, and today it arrived. And, possibly for the first time ever in the history of online deliveries, the deliverer arrived with a big beaming grin and a "No substitions today, Missus". Hurrah. And now, thanks to Tesco and to a friend, I have 4 jars, 2 cartons, 3 packets and 1 tin of coffee. I think that should see me through the next couple of weeks quite nicely.

I was running late, so late I had no time to stop for petrol. And I managed to drive to Aylesbury and halfway back on an empty tank.

It's not been a totally wonderful day; I've been running late through most of it. Mog's school bus hit my neighbour's car this morning and then went AWOL with Mog for 40 minutes this afternoon. More phone calls, more complications, more deadlines missed. But, three children sleeping quietly, three outfits planned with Trina, no one vomiting and everyone's bowels open but not excessively so. On balance, a day more good than not I think.

Tia

Wednesday, 6 May 2009

Wheels.

Wheelchair clinic at school today. Mog's wheelchair was already in school, so her buggy needed to squeeze back into the bus to get her from us to her classroom. We arrived to find no parking spaces, so pulled up outside the main entrance and began to unload to the rapt attention of one class waiting to go out on a trip. Twelve children, several staff, plenty of people to stare as I stomped up and down the ramp offloading a seemingly endless number of children and wheelchairs. And then a concerned receptionist or two who watched as I closed up the bus and drove it round the corner, leaving three children and four chairs stacked reasonably neatly by the front door.

The Wahooligan enjoyed the echoes in the school hall. Little Fish's wheelchairs first, and the fantastically excellent news that her power chair backrest can be easily adjusted. This is great; she's having surgery to her hips next week and will be splinted into a reclined position for the next wee while. She should hopefully still be able to drive her wheelchair which makes me scared but happy in equal measures.

Her little wheelchair next - this is not supplied by the wheelchair service, but it has been agreed that she should have an identical one supplied by education for when she goes to school. So the wheelchair service agreed to measure it up and sort out the ordering. This is also great news; instead of having a static posturally supportive class chair, Little Fish will have a super zippy lightweight wheelchair, and can drive her power chair to and from school each day. She'll have both chairs and her wheeled stander at school, so apart from moving from one chair to the other, she shouldn't need to rely on anyone else to push her about at all. Independence.

Mog next, and it was agreed that she has outgrown her chair and so will need to be recast for a new seat. I'm reasonably sure we agreed that back in January, but hey ho - it's happening now and that's good at least. Next up one tray for her chair. Due to her muscle spasms this needs to be padded top and bottom, which turns a thin sheet of ply into a monstrosity three inches thick. She was whisked off into the therapy room to have this fitted (no room for the rest of us there; it's a tiny room), and came back looking very smart but somewhat vacant.

Vacant did I say? She wasn't doing very much, that's for sure. She wasn't in fact breathing - her arms rested on her tray which was clearly very comfortable and a much better position than dangling down. Unfortunately this had the side effect of pushing her shoulders up, which wouldn't be a problem except that this forced her Hensinger up and into her windpipe.

We lowered the tray a little...

So now she has a beautiful tray which will only ever be used under very close supervision, and until her seat is adjusted, will have to be pushed down as far as possible over her knees - better squished legs than strangulation.

And then we came home, and then we took Little Fish to preschool, and then we picked her up and she was tired and obnoxious. And then the Wahooligan was sick. And I cleaned him up, and he grabbed the cloth I was mopping him with, and rubbed it into his eyes and then flapped it up and down, spraying the house with a fine mist of vomit. And then Mog asked to go to bed at 5.30, and now I can't decide whether I have a house full of poorly children, or just a pile of very overtired ones.

Early nights all round I think.
Tia

Tuesday, 5 May 2009

Making an impression

Photo for k.

Cleaner due at 9; visitors expected at 10. Perfect timing; Little Fish
goes to school at 8.30 and not even I can destroy the clean factor in
that time. And then the cleaner was late, the visitors weren't, and it
all went downhill from there really.

An appointment at 3.15 at Little Fish's new school meant collecting
Mog from school at 2.30 to avoid the buses. This meant loading LF and
the Wahooligan into our own bus together with all LF's equipment and
leaving the house by 2.25. This was delayed somewhat by the
Wahooligan's extended nap.

I was in Mog's classroom by twenty to three and then back to the bus.
All LF's equipment meant no space for Mog to travel in her wheelchair.
And a nice gust of wind plus judgement error had me swinging Mog not
into the bus but into the door. And knocking her tooth out.
Marvellous. So as I knelt on the ramp tipping her upside down and
trying to excavate the tooth from her mouth before she inhaled it I
was joined by the school secretary, the escort from the girls' bus,
and the class teacher and assistant. I do love an audience when I make
an idiot of myself.

One tooth neatly deposited on the ramp and lots of blood dripping down
Mog's front and my jeans. Many many staff placated and offers of
ambulances gently declined, I eventually manage to get Mog (who seems
to be totally unfazed by it all) into a carseat, and then load the
wheelchair up behind her. This is not helped by the several staff keen
to explain exactly why it won't fit. Eventually it does, and I close
the van door. Only to find it sticking on the handle of the wheelchair
which for some reason has been tightened up so much we can't release
it to fold it down.

We left the chair at school. This means I will have to drive her to
school myself tomorrow rather than have her go by bus, but since we
are in anyway for a wheelchair clinic this is not necessarily
disasterous.

Rethinking my initial plan to carry Mog throughout the visit, I make a
quick trip home to pick up her folding buggy. This upsets Little Fish,
who throws a face slapping hair pulling head banging tantrum of the
kind no one else ever sees. Happily this has the side effect of making
the other two laugh, so we finally arrive at school with at least half
the occupants of the car in a good mood.

School is of course full of parents waiting to collect children. There
is one disabled parking space right by the entrance, but policy
dictates the gates are locked (not much point in the parking space
really then is there?) so we park at the end of the drive and unload 3
children and 4 wheelchairs.

One of the many people joining us for this meeting has handily parked
next to us, so she carries LF's manual chair, LF drives herself, and
I, still covered in Mog's blood, do a push me pull you shuffle with
Mog and the Wahooligan. In this manner we walk past every single
parent of every child in the school. It's good to make an entrance.

We then comprehensively prove you can't fit two large special needs
buggies plus one powerchair into most places in a primary school. We
male plans to tear down walls in toilets and move sinks, we discuss
ramps and tables and lunches and other issues of accessibility. It is
unlikely this will be sorted by September so we discuss interim
measures too.

And then we do the whole process in reverse and limp home soggily.
Where my attempts to research stuff and offload onto the world at
large are met by a big fat silence as my Internet connection appears
to be totally absent.

This post brought to you by my phone. And then the battery died
without warning. And now I want to know what I've done to destroy my
communication with the wider world.

Tia

Monday, 4 May 2009

Rainy Days and Mondays

Had a nothing kind of day today. Our carer didn't show up this
morning, and by the time we'd waited to see if she was just late, we
were very late. And by the time we had dealt with the wet beds and I had got over my irritation at setting my alarm for no reason, we were so late we decided to cancel the morning. So we sat with playdough and books and music and had a lazy hour behore lunch.

Half expecting visitors in the afternoon so we stayed around and lazed around and did nothing very much until we realised they definitely weren't coming. So then we did some more nothing until suddenly it was bedtime and we had done nothing all day long.

And then, children in bed, I sat down at the computer, and my Internet connection died, so thisvpost is brought to you by the power of the iPhone. So I ate my tea and then I came to bed.

Sunday, 3 May 2009

Blanket

Remember this?

Life, and a small boy, got in the way for a bit, but finally this afternoon we finished turning it into this. Nice and sort and snuggly and lined with sheepskin.

And after weeks of "You making my blanket Mumma?" and lots of "It finished yet?" and a fair bit of "I can see it just touch it little bit?" I finally handed it over to her. And she said "Not now Mumma I bit busy" and dropped it on the floor and whizzed off to do other things. So then I killed her - do you think that was wrong?

Tia

Saturday, 2 May 2009

Saturday

One week ago, we were struggling. I like this blog; it helps me to remember where we have been. I still feel as though we're struggling, but what we achieved today would have been an impossibility just seven days ago. Progress.

I even managed a lie-in today; Little Fish woke me at ten to seven this morning. And the challenge of a long drive to visit friends was decent enough motivation to get me up and out of bed. Half way through the breakfast round I thought to check what time we were due. Not 11 as I'd thought but 2.30. Excellent; I had just been given 3.5 hours.

So what do you do with 3.5 hours? In our case, apparently we stall. Breakfast slowed down, Mog decided to go back to sleep, I had a bath, and Little Fish threw a tantrum because I chose not to share it with her. She was placated though by my spending an hour or so sewing on her new blanket. Just the edges to do now and she'll be able to snuggle into it. Perfect timing; provide the child who can't control her own body heat with a heavy denim and sheepskin snuggly thing just in time for the hotter weather. Nice one.

A quick lunch round and time to go. All children loaded into the van, me in the driver's seat (despite second tantrum from LF; thanks so much to the relative who suggested she might like to help me drive. No, she isn't fooled by holding a toy steering wheel), we pull out of the driveway.

And then back into the driveway so that I can leap into the house and grab the present and a couple of spare nappies.

Out of the driveway and halfway round Oxford when I realise we don't have Little Fish's wheelchair. Oops but never mind, she'll want cuddles anyway so this way they're just justified. And then all the way around Oxford when I realise we also don't have Mog's suction. Less optional than the wheelchair really (although LF would dispute that), so home we go to pick them up and check the phone for messages.

Back on the road again and finally on our way. Mog singing in the breeze, Little Fish keeping me informed of everything I might have missed ("bus there, van there, left a bit oh NO turn round, oh roundabout oh stop, ooo bus, white care, mind that red car"), and the Wahooligan sleeping off his lunch. Beautifully clear roads, and we chug chugged along on our way into London.

Into London to visit a friend and her newly adopted daughter. A lovely afternoon with them and with other friends; Little Fish and Mog were very impressed to see their Courtney Courtney again. And then back into the van, and back home again, and three children into bed, and me sitting down thinking about what a nice day it had been.

And then chatting with friends and the newly adopted daughter is now in hospital having had a great big seizure just after we left (I probably ought to forgive her for puking all down my dress then). So we had a lovely day, but I suspect they will be having a somewhat less lovely night. And I'm not sure whether that cancels out the nice day or not or what. But very much hope that they have a boringly quiet night in hospital and can come home tomorrow to carry on with their celebration weekend.

Tia

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