Saturday, 31 July 2010

All there ever was, is, or shall be

Is packing. Packing the clothes, packing the food, packing the medicines, then unpacking to double check, then repacking again in case something got left out in the first repacking. Packing the tent, and realising the bag was strangely light. Searching the house, and the parents' house, and finally finding the poles lurking in a corner of a bedroom. Packing the bedding, and losing the chairs. Packing the purse, and realising you've spent the money you were planning to hand to the carer. Packing the sponge bags, then needing the toothbrushes.

The bus is now packed to shoulder height, and that's without children, C's belongings and tent, and limiting ourselves to one wheelchair per child. Countless electrical equipment will need to be sorted into it in the morning, and our Bond villain camp chair needs tracking down. There's a freezer full of frozen tummies to squeeze in somewhere; a small child who might want some kind of toys at some point, and the tins of food piled high on the passenger seat need shuffling into cubby holes at the back so C can sit down.

How can a Mercedes Sprinter not be big enough to take four of us camping? How have I three times now completely cleared the laundry pile only to turn around and find more things to wash? What will I forget this year? Where is LF's iPod? Do the girls need to take bibles when they can't read? Why is MetCheck predicting six days of rain and the BBC only one? And can I be loyal to the BBC please?

We're off first thing in the morning - or as close to first thing as we can manage. We may have bloggability; if not, then have a good week and please think of Joshua training busily, and various friends whose children are very sick right now.

See you when we get back

Friday, 30 July 2010


Today, we got to meet a fairly cool group of medical students. A group who had raised £22,000 for charities over the past year, and who had decided to give 1/3rd of that to ROSY.

As Little Fish and lots of friends played croquet, the rest of us less energetic ones chatted to these student doctors. And we talked about their recent placements, and our experience of hospitals and doctors.

And here's the advice I'd like to give - boiled down from what most of us were saying to them at the time.

First of all, listen.
When you're faced with a medically complex, profoundly disabled child, listen to the parents. Don't panic about the various chronic conditions the child has, see past them to the present acute need. Listen to the parents.

Think about whether you actually need a full medical history. When you have a teenager in front of you, do you really need to ask questions about pregnancy and gestation? Think about the impact some of your questions may have on the parents; remember that some of the information you might want to gather could be fairly sensitive. And remember that we love our children, that we think their lives have value, and we believe their quality of life is generally pretty good.

So, listen. If the parents tell you not to worry about the fact that the child is having a seizure, don't call the crash team. It might just be that seizures are a normal part of life for that child. If the parents tell you you'll never get blood out of that particular vein, consider the fact they may well have met many other medical people who might have tried before you got here. If we suggest that a certain proposed treatment will have negative consequences, accept that we might just be speaking with the voice of experience.

Forgive us when our timelines are muddled. If we've been up all night several nights in a row, we might be having difficulty remembering what day it is today, let alone when this present set of worrying symptoms appeared. We might need to give you more information, in a fairly rambling monologue, than you think you need. Sit down, if you need to - we need to give you this information.

Please, treat our children as human beings. When I tell you my child can indicate yes and no, wait for me to let you know how she does. You might well think I'm delusional, but if you could swallow that superior look and let my child show you what she can do, it would be much appreciated. And if you won't address her directly yourself, please be patient whilst I do so on your behalf. Do NOT stick my child with a needle when I'm only halfway through telling her that's what you need to do.

Don't be afraid to say you don't know. We don't know either, that's why we've come to you. It is OK for you not to know either; if the answer were something simple and straightforwards we would probably not have needed to come to you in the first place.

You are undoubtedly the medical experts. But we are the experts in our children. Listen to our suggestions. Wait until we get through the whole explanation of what we think might work. Even if you think it's ludicrous, please wait until we've finished explaining our reasoning before you shoot us down. And, ideally, please don't shoot us down!

We're not expecting you to fix our children. We're not expecting miracles. Please remember that when we come through A&E, we're looking for a short term solution to a short term problem. We know that our children aren't going to start walking and talking as a result of your treatment - but we also know that they are still children worthy of receiving treatment for their current emergency. There are all sorts of multilayered DNR forms our children may have; please take the time to read them if they are in place before you make assumptions.

Thank you. Thank you for wanting to work with our children. Thank you for coming to see our children, even if they scare you. And thank you for listening.


Wednesday, 28 July 2010

Here's to one amazing boy

The first time I met Joshua, he was a small boy playing with his sisters. His older brother, who happens to have Down's Syndrome, was helping his older sister, who happens to have Cornelia de Lange Syndrome to eat her lunch. His father was rebuilding the family kitchen in an attempt to create more useable living space to accommodate the needs of their growing family, his mother was hanging out endless acres of snowy white terry towelling nappies, and he and his middle sister were playing with his newest little sister.

Over the past few years I have seen that little boy grow into a superbly caring young man. A boy who quietly gets on with things, who doesn't complain (or at least not in public). A boy who has watched his mother struggle with her own medical conditions, whilst his siblings have become increasingly and worryingly unwell too. A boy who has watched his little sister deteriorate as she progresses through the various stages of Leigh's Disease. And who has seen his grandfather approaching the end of his life through cancer.

Except, of course, that isn't really true. I haven't seen Joshua watch that. Because, as that was all going on, Joshua was quietly going blind. His vision, never great, grew dramatically worse, and Joshua felt that this was minor compared to what his siblings were going through. He decided that his parents had enough worries, and he didn't make an issue of it.

It's an issue now. Joshua's school have been helpful, despite not having had much experience of a child with serious visual impairments. But now Joshua cannot see the white board. He can't read the work he is supposed to be doing. And the educational system, which has been so supportive towards his siblings' special needs, is not able to provide the equipment he needs in order to be able to access the curriculum and take his exams.

I think at this point, most of us would simply sit down and give up. But Joshua's not like that. Far from giving up, Joshua has decided to do his best to raise the money himself. The equipment Joshua needs is a Low Vision Aid, the ReadIT Scholar, ZoomText and a Rugged Laptop to use it all on. The estimated cost of all this is approximately £6,500. And Joshua is hoping to raise this by having his own sponsored bike ride. Clearly, for his own safety (and for the safety of people around him!) Joshua cannot cycle on public roads. So, during the family's two week summer holiday, he is hoping to cycle one hundred miles on dirt tracks and open countryside. Not only that, but he wants to do so whilst towing his oldest sister in a bike trailer. Not only will she really enjoy the experience herself, it will give the rest of the family a break from having to watch her every move.
Joshua really is an amazing young man. If you would like to help Joshua raise the funds he needs, you can make a donation through his mother's blog. Here you can also find sponsorship forms, if you would like them. If you are unable to help financially, then Joshua and his family would value prayers as they try to find the funds to get this equipment for Joshua.

Thanks for reading,

Tuesday, 27 July 2010

better and worse

So, today started badly with the realisation that I had run out of one of Mog's meds; one which the chemist doesn't keep in stock as it is too expensive.

But then it got better, because Mog managed to be hoisted into the new chair, and managed to contain her unhappiness until it subsided and she was comfortable.

We went off to the local orthopaedic hospital, where things got worse when the receptionist in one part of the building wouldn't accept the return of a wheelchair and wanted me to wait and track down the person who had loaned it and asked us to return it there today. It would have been a long wait as she was not in today.

Then they got better - only a ten minute wait in X-ray. And worse, because yet again the children's play area had been made inaccessible to anyone in wheelchairs due to extra chairs being placed there. And then better again, because the radiographer promised to bring it up at a staff meeting tomorrow.

And then things got better yet, with only another ten minute wait to see Mog's surgeon. Who is now happy that Mog's hips are in exactly the right place and reasonably confident that the metalwork is not causing her pain. And who then threw us for a loop by suggesting intrathecal baclofen for her spasm, reassuring us that it was a very minor op. All experiences welcome.

Then things got somewhat worse, as I realised I did not have my purse. And that it had not been handed in at any of the receptions. But better again, when I scraped up enough change in the bus to find some lunch for Little Fish as we went off to get her wheelchair repaired. And better yet when her chair was kitted out with four new outdoor wheels. Apparently she's had indoor wheels for the past two years and no one has noticed. Grass and mud might just be a little friendlier now. And much better when we got home and found my purse on the settee.

Betterer and betterer; Nanny McPhee & the Big Bang proved to be a hit with everyone, although I do hope Little Fish gets over her desire to tell everyone she is all covered in poo before we go to New Wine (Church camp).

And then hurrah for inclusive siblings; Little Fish singing songs and, unprompted, finding verses for Mog to join in with. There's something pretty special about listening to her sing "If you're happy and you know it, sit in your buggy."

More minor niggles; the realisation that Mog's Blue Badge runs out next week and I still haven't found anywhere to get her passport photos done. I haven't had the van's air conditioning fixed yet, there's Queen Anne's Lace growing instead of grass in the back garden, I don't think I have enough semi-respectable clothing left to last a week under canvas, we keep eating the food I keep buying for camp, and I still haven't checked whether the cat vomit has eaten through the tent canvas. Ought to get onto that really.

Still, on balance, not a bad day I think.

Monday, 26 July 2010

Chariot of fluff

It's not totally tweaked yet. But I think I'm starting to see how it might just work for her.

Meanwhile, noises off "Mummeeee, Mummeeeeeeeeeeee!!!!!!!! Now I am asleep, you need to come into my room and sort me out."

Nice try...
(ps. Hi A - she is telling the truth, I really have!)

Sunday, 25 July 2010

Tell me a story

Most evenings, I read Little Fish and Mog a story together before I shovel them into bed for the night. And how it generally works is that I read the story to them both, then Little Fish takes the book and "reads" the story back to Mog again; lots of audio description about the pages of the book and a little bit of narration too, especially if there is a shouty dialogue about a naughty child or pet.

Last night, the tables were turned. I dug out an old story cassette. Popped it into a tape recorder (ancient technology now!), plugged the recorder into a special latch box, plugged Mog's switch into the other end of that same box, and Mog read Little Fish a story instead.


Friday, 23 July 2010

Day One

Today the first official day of our school holidays. Little Fish finished on Tuesday, Mog came home unwell on Monday and didn't manage the rest of the week, so I've had both girls at home for a few days anyway, but today was when the holidays were supposed to begin.

Not a bad first day in some respects; nice weather, lunch out, civilised children, an afternoon in town and phone calls confirming delivery of new buggy on Monday and new supportive insert ready for collection. Of course I missed the cut off for collection by ten minutes, so will either have to scramble to collect it before our 9.15 appointment (at home) on Monday or else leave it until after the buggy has been delivered. Which would be a pain, since ideally I'd like the buggy to be set up to fit it.

Oh, and the reason why we missed it and why we were in town? We were seeing the GP - Mog has decided to celebrate the start of the summer holidays with a chest infection.

Chicken Pox last year; we are not missing New Wine again so she's got 8 days to get over it.


Thursday, 22 July 2010

Spasm in a Triton

Mog had some spasm again this morning.

But she's trialling a new wheelchair with a dynamic back.

And the movement of the backrest absorbed her spasm, let it happen, and then brought her back down again. And the spasm came again, and the backrest let it happen, and the spasm reduced. And again. And again. And whilst Mog was not very comfortable because spasm is painful whatever, it's a big improvement on this.

So the dynamic function is excellent. She can still use her switch, she can sit in the chair all day, and her feet seem to be much more comfortable on the foot plates which have been angled downwards to let her toes point. She's not moving her legs to accommodate her spasm; the backrest is letting her back take it instead.

It's not perfect though. It's long and big and heavy. It isn't moulded, and Mog is not modular chair shaped. It is leaving marks on her back, she's tucking one arm inside the lateral support and that's rubbing too. The chest harness comes down and puts pressure on her gastrostomy, and the shoulder straps have rubbed her neck. The pommel is too wide and doesn't come smaller, the covers are only washable up to 30C, and I can't get the headrest to sit properly with her collar. And she definitely cannot sit in it without her collar; video aside she would very quickly get her neck wedged into that gap.

Grateful to JCM for lending it out, and curious to know whether we can make it perfect. But very pleased with how well the dynamic side of things works for Mog.


Wednesday, 21 July 2010


What does independence mean to you?

For me, it's the power to make my own decisions, the freedom to make my own mistakes, and the knowledge that I am the one in control. True, I also happen to be an adult living in my own home, caring for my children, carving out for myself pretty much the life I chose to live. But it's that in control bit which is the most important.

This morning, Mog slept. Our carer arrived, and Mog slept on. So our carer helped Little Fish. Little Fish is five years old. Your average five year old girl is probably mostly able to dress herself without much help from her parents. Little Fish needs a little more help than that. So our carer turned herself into LF's facilitator.

I heard some words, a fair bit of discussion, and then lots of giggling. And Little Fish then turned up in the doorway dressed in a very fluffy fleecy winter all-in-one set of pyjamas. She'd sent the carer to the wardrobe, directed her to the correct shelf, instructed her on where to find underwear, and then picked the sleepysuit. And our carer, in her role as facilitator rather than overseer, allowed her to do that and simply helped insert legs and tweak zips. And Mog slept on.

And then they went back to the bedroom because Little Fish decided that the other peoples in the world might point and laugh, and she then chose an entirely appropriate outfit for the day, from a memory of the clothes she knew she had in her wardrobe, and remembering to instruct the carer in bits and pieces which are slightly different to the average five year old. And Mog slept on.

It might not be independence as most of the world sees it, but self-directed care; I'm all for that. Great.

And then Mog woke up, and we went off to the wheelchair clinic to try out a dynamic chair. And we came home, and Mog wanted to see how her switch might work with the dynamic back.

And although what you might think you're seeing is a girl having fun and messing around with bubbles, what you're actually seeing is a girl in control of her own environment. Choosing when to blast herself with a cooling drip of bubbles, and when to stop. It's a different kind of independence. But it's no less exciting.


Tuesday, 20 July 2010

Dear School

When my daughter started school, I worried; will they like her? Will they understand her? Will they know what makes her tick and see past all her wonky bits?

I go school, I 'ave friends? Who look after me?

I worried about all her medical needs, about her physical needs, about how everything she needed to have done would fit into the school day and yet leave time for learning and having fun.

I eat my dinner, I be doing lots of playing.

I wondered what the other children would think of her, how they would react, whether they would manage to include her and her wheelchair in their games and activities.

All my children like me.

I wondered if the doubters might be right, and if having 1:1 might be smothering and hold my child back from becoming more independent and well-rounded, and having more normal childhood debates.

Holly and me, we, we not 'lowed to play together acos we are getting in trouble.

I thought perhaps my daughter's energy levels would not allow her to attend school full time.

Oooohhh, Mummy, why I not go school on Saturdays?

I thought my daughter's anxieties would make it difficult for her to be away from me for the whole day.

Bye, Mummy, I see you later, KISS ME!

I saw my precious little girl growing up and starting school.

You saw potential.

You saw a child, a child with an interesting collection of challenges, true, but a small girl first. You made room for her, welcomed her, nurtured her and educated her. You celebrated her successes and helped her to see all the things she could do for herself. You gave her confidence.

Thank you.

Monday, 19 July 2010

Dear Abbott,

Back in February, we had an epic pump saga. Two broken pumps, three broken replacements, followed finally by two working pumps.

You apologised. You said you didn't know how it could possibly have happened. You said you would take steps to make sure it would never happen again. You set your nurse onto us; she also apologised and said she would look into it.

I didn't hear any more from you, but I assumed you might have actually been looking into quality control as well as the warehouse storage issues.

Last week, Mog's pump packed up. The new one, from February. It screamed its screamy alarm; school reset it, it settled for a bit, then screamed its screamy alarm again. And had in the meantime mysteriously reset itself to feed not 120mls/hour but 19mls/hour. Cue one mildly dehydrated child and one very long night waiting for it to catch up.

I phoned you, to ask for a replacement. And you told me you had no replacements in stock, and that I would need to just make do. I explained this wouldn't work, and you reluctantly agreed to send out a replacement not within the six hours you promise, but the next day. Thankfully, Mog was able to borrow school's pump for the rest of the night.

Today, three days after the replacement pump arrived, I have had a phone call from her class. Mog is on a school trip today. And the pump has failed. One big screaming F-26 error, one pump which has reset itself to its own preferred settings, one class trip disturbed and one child once again not getting the nutrition and hydration she is supposed to receive. She can't borrow the school spare this time, because she is not at school.

I will phone you again when she gets back from school, but really, what confidence can you give me that this next replacement pump will actually be working as it should?

You don't consider the fact that the pump will neither deliver the correct dose nor alarm to indicate an error if the tube gets a kink to be a fault. Yet you designed the tube and the backpack, and designed the tube to be too long to sit in the backpack without kinking. You don't consider it to be a problem that the pump will not always recognise the fact that it is empty, and will, on occasion, pump air into the stomach for hours on end if it has been knocked over. Your suggested solution is to set a dose; this does not help when the dose is 1Litre and the pump is knocked over at the start of that time. And you consider a wide variation in dose actually delivered to be perfectly acceptable - I put 500mls measured dose into your pump, sometimes your pump tells me that was only 450mls (which means my daughter has had her food too fast, an issue when it is running at a very slow rate), and sometimes it tells me she has had 500mls when there is still 100mls left in the bottle. With a 700 calorie diet, delivered with 700mls feed, that's quite a variation in what she actually receives over the course of the day.

You have a policy which requires erroneously delivered supplies to be incinerated, even if these are in sterile bags in sealed boxes and have simply made a journey from your warehouse to my front door and back via courier. You insist I call you on an 0800 number (which is not free from my mobile phone) and seem to think using the pump is an optional extra rather than a necessity. I would love that to be true.

To be fair, you did send us out a very nice new rucksack to replace the one with the broken zip, and it arrived the following day with no hassle at all. Thank you for that. Could you please fix the other problems though, and provide us with a pump which is safe, reliable, and accurate? Is that really too much to ask?


Friday, 16 July 2010

Poorly boys

Your prayers please. For one small boy who is currently in a hospital far from home, with his family but without much of an idea about what is wrong. Something is obviously very not right but no answers yet.

And for one bigger boy, one young man in fact, currently fighting hard against an overwhelming pneumonia. And for his family who were told he was doing better, and now find he is doing much worse.

Both boys have multiple disabilities, but these illnesses are not normal for either of them.


Thursday, 15 July 2010

Dear Daughter,

I don't know what you will be having for lunch when you get home after the church holiday club mornings at the end of August. I do promise you that I will always have food and you will always have something though.

I also don't know how many people you'll be able to invite to your Birthday Party, nor whether you will actually decide you want one. Your Birthday is not until March, could we leave thinking about it until after Christmas please?

We aren't going to France for the summer holidays. Please stop telling people we are.

"Britain is an island" is a difficult concept to grasp. I get that. And I realise I should probably have left the explanation at "Because the buggy is in a different country a long way away and will take a while to get here." No, the boat won't come sailing up our drive. It won't squash the cars because it will stop when it runs out of water. And the buggy will come off the boat and go onto the lorry. No, I don't know what colour lorry. And I don't know when. And it won't be tonight. And it won't be tomorrow. And yes, I know it's nearly the end of term and the man did say it would be here by the holidays, but it doesn't look likely now. I don't have the answers, sorry. No, the lorry won't squash our house. The buggy will come off the lorry and go in a smaller van. No, I don't know what colour. And no, it won't crash. Please stop fretting.

You cannot put cream on your right elbow using your right thumb and index finger. I'm not going to argue with you - try it and see but you won't succeed. Please either let me do it or take some with your left hand.

I haven't read you a story yet because you haven't stopped asking me questions long enough for me to ask you what you want to read. And now it's bedtime and I still haven't read you a story because I can't answer another one of your questions without my head exploding. Please go to sleep.

Goodnight, little girl, I love you, see you in the morning. But please, not until the morning. Argh!

Wednesday, 14 July 2010

Tizanidine and Toggle Switches

We increase Mog's Tizanidine today. A morning dose added. She fell asleep. I worried. I sent her to school anyway, as she was having a big communication/switch access/SLT meeting. Oh, and a wheelchair appointment to sort out a bigger footplate.

One sleepy Mog probably better than one stiff and spasmy Mog, but I worried again about how useful the switch access appointment would be if she stayed fast asleep throughout it.

I shouldn't have worried!

We now have a Toggle Switch and mount on loan for the summer, and I must dig out our old Power Link box. I'm not sure I can replicate the music, but I'm sure we'll find something she enjoys just as much!

I've also got to get to grips with Power Point as apparently she'll be able to use this switch to tell stories. Anyone fancy coming over for a tutorial?


ps - one morning dose of Tizanidine and we can get her arms up over her head, her fists have unclenched, and she's sitting fully upright in her wheelchair. Past users; does this effect last or is it temporary?

Tuesday, 13 July 2010

Wave the flag

Being a Brownie means being responsible.
And if you can't Lend A Hand you can still do a good turn and take your own turn at carrying the flag for a Promise Ceremony.


Monday, 12 July 2010

What's this?

What's this hiding under Auntie Margaret's mixing bowl?
A generous gift from the Grolly-Beast.
I think I may actually prefer beheaded rats to live toads. Not something I'd particularly considered having to rank before. And she looks so innocent too:
In other news; Mog's preferred position.
And no, her hand isn't mangled under the settee; that's just how it's fixed these days.


Sunday, 11 July 2010


What works, sort of:
  • lying flat on the floor with the freedom to bend into whatever shape necessary.
  • being propped to allow some bending but not a complete pretzeling.
  • Norah Jones, Matt Redman, Joseph and the Amazing Technicolour Dreamcoat.
  • being held and rocked and hummed to.
  • having wrists and ankles rubbed.
  • lying "bums up" across my lap having her back patted.
  • having enough time for the meds to kick in and then to take it very slowly getting dressed.
  • being lifted instead of hoisted.
  • round the clock pain relief and diazepam, with a side order of chloral hydrate.
  • lying on a duvet in the flowerbed (the only bit of the garden with deep shade).
  • lying in bed with a fan.
  • going out to see anyone who might be able to help (this seems to produce a big relaxation, just long enough to make me look a completely overprotective fool).
  • being vented more often than usual.
What does not work:
  • lying flat on the floor with the freedom to bend into whatever shape necessary.
  • being propped to allow some bending but not a complete pretzeling.
  • Norah Jones, Matt Redman, Joseph and the Amazing Technicolour Dreamcoat.
  • being held and rocked and hummed to.
  • having wrists and ankles rubbed.
  • lying "bums up" across my lap having her back patted.
  • having enough time for the meds to kick in and then to take it very slowly getting dressed.
  • being lifted instead of hoisted.
  • round the clock pain relief and diazepam, with a side order of chloral hydrate.
  • lying in bed with a fan.
  • being vented.
Notice any similarities there? Which seems to leave me with leaving her in the flowerbed. And whilst that's tempting I'm not sure it's a long term solution. And it's supposed to rain tonight, which seems a little harsh.


Saturday, 10 July 2010


I recommend raspberries. Buy half a dozen canes, poke them into holes in the ground, and then enjoy a sprinkling of raspberries for breakfast every day for several weeks in the summer. Chop them down when they've finished fruiting, and watch them grow again the next year. Until finally one day you manage to collect more than just a sprinkling. Six whole juicy ounces! Finally, a picking too large for just my hands.

So, what to do with them? Not really enough to freeze down, not enough to share around, not enough for jam or a crumble.

And every recipe I can find suggests pairing them with that most evil of pretend foods, white chocolate.

Until I decided to search through The Pioneer Woman's Tasty Kitchen and came across these rather delicious-sounding Cheesecake Brownies.
Looking good!

Friday, 9 July 2010


So it turns out the tizanidine is not a miracle cure. And for the last few days we have either had this

Or this
And very little inbetween.

Went to the GP today to rule out anything obvious and her ears are clear, her chest is sounding beautiful, and there's nothing hard where things ought to be soft. I suppose it's a good thing she doesn't have an ear infection, but it would have been nice to know this had a temporary and fixable with antibiotics kind of a cause.


Thursday, 8 July 2010

Little Fish's Long Day

Start by going to school, and building up your excitement.

Come home, pack a lunch, and head off in a friend's car. Get Mummy to check that friend is driving to the National Indoor Arena, and not the National Exhibition Centre (both in the same city)! Arrive hereAnd pick up ringside seats
Ready for the opening ceremony
And the tactics talk
And the Game!
Hang round afterwards and have a race with one of the team members
Pose with another
And with your racing companion
And then load back up into your friend's car, and drive home, bubbling with excitement.

Sleep sweetly as your friend and Mummy spend hours trying to work out how to get photos from friend's camera onto Mummy's computer without a cable or wireless facilities.*

A good day

*Answer: eventually, after too much fiddling, hook friend's laptop and computer up with the ethernet cable from the new modem, and hope for the best. Seems to have worked!

Wednesday, 7 July 2010

Friends like these...

My friend decided I needed flowers.
Pretty flowers.

Very, very pretty flowers!
And then, because I didn't collect them from the post office (thought they were something else), and so didn't know about them, and so didn't mention them to her, she thought she hadn't ordered them properly.

And so she ordered another delivery.
And now I have lots and lots and lots of flowers!

Moral of the story would appear to be, delay giving thanks and you'll get something better. No, wait, that's not a moral. Umm, be disorganised and good things will happen? Not sure that's right either. How about, I'm really happy that I have friends who, despite knowing how disorganised I am, still assume that any error is probably down to them and not to me. And I love having friends who are as disorganised as I am!
In other news, a teaser from Little Fish's day; here she is in her front row seat waiting for the game to begin. She is apparently having a wonderful time. My friend who has taken her is not having such a great time; someone has stolen her wallet.

Tuesday, 6 July 2010


Flowers in the post today from a friend. A friend I first met online, one of those friendships we sre supposed to warn our children against. But a friend who is a powerful prayer warrior, even when she's drowning in the needs of her own immediate and extended family. And a friend who knows just when large bunches of freesia would be most welcome.

The postie handing them over last seen playing something large and brassy at the front of church.

Later, collecting Mog from school, I check up on our fish, all looking very happy. Home life spilling out into school. And school connecting with home with an invitation to join the class on an end of term outing.

A church friend meeting us to meet Little Fish's teacher; she's offered to help us out with my cloning project until the end of term. I can sleep again, not having to worry about which girl will be in least trouble for missing the end of the school day.

A conversation with another 'net friend turned real life friend, who is taking Little Fish on her Big Day Out tomorrow.

And then a giggly Mog to Brownies, to my old Brownie Pack, where one of the Guiders is the daughter of Mog's old Nursery Nurse, where one of the Brownies is the daughter of Little Fish's TA, and where another is the daughter of the man who owns the clothes shop in town where they aren't afraid to tell me what not to buy as well as what might work. Church and schools and home life, past and present all mixing together.

And a contented Little Fish left in Grannie's excellent hands, reading story books vaguely remembered from my own childhood and doing puzzles with story lines which would have appealed to Goldie. Cuddles and companionship, and a multi-generational back up system in place to enable Mog to go to the place where she is most fully included in the wider world.

And then of course Mog decided to fit, not badly enough to need any kind of intervention but too much to be able to stay at Brownies. So, with a letter tucked into her slipper about the need to bring 28 snake sweets next week, we slunk home.

And we sat and waited a while, and then Mog's carer who was Goldie's carer came to put her in bed. And we talked about our old house, and her new house, and found new connections over television programmes.

A different friend, a real life local friend, emails a photo of her son on their holiday.

I sit here now and I can hear the faint pitterpatterings of the dog who lives upstairs, and an echo from a neighbour's television set. Somewhere under furniture in this flat, three cats are hiding (they seem to be of the opinion that if I can reach them I may haul them off to the vet to have body parts removed). I may be the only adult in this flat, but I'm certainly not isolated. And to the left of this page, a little bouncy icon indicates there are less local friends staring at their version of this screen, ready for a chat and a catch up and a communal cup of coffee (or at least one we both make and then drink at the same time). But, the button on the right shows me that it's bedtime and that our next carer will be arriving all too soon in the morning. So I'll resist the urge to go visiting, and go and find a duvet instead.

And I've taken so long to write this, I kind of forget what the point of it was. But I think it was probably something to do with how it's quite nice really.

Monday, 5 July 2010

Sports Day

399 children sitting in rows on the field, and 1 sitting in her wheelchair somewhere in the middle, frantically waving at Mum. One very happy, if very noticeable, child in amongst the rest, doing her best alongside all the others. But one small girl who was very upset all evening, ostensibly about the lack of ham in her spaghetti, but I'm not entirely convinced.

Happily, she's off on a special trip later this week somewhere which might just show her that wheelchair users can be pretty awesomely good at sport too.


Sunday, 4 July 2010


A very very quiet whisper...

I think the Tizanidine might be working. No diazepam needed at all today. Only one dose of ibuprofen. No paracetamol. No spasm. No pain. No misery, even when being moved. Just one relaxed, sleepy, smily little girl.


Saturday, 3 July 2010

'Alaxin' without the other peoples

A nice day today. Little Fish went to a fun day with Grannie and Grandad; Mog and I stayed on Grolly Watch. And since Grolly curled up in a quiet corner and made it very clear she wanted to be left alone, we had a nice peaceful time whilst LF burned off some of her energy. Great.

Little Fish scored a free packed lunch at the Fun Day, so she munched her way through that and then decided she'd like a nice soak in the baby bath again. So she lay back in the bath, legs overhanging one end, arms folded up under her head. And said "Mummy, I likin' this. We are 'alaxin today. I are 'alaxin' without the other peoples. We can 'alax together."

My perfect Saturday I think, 'Alaxin' peacefully with a cool breeze blowing through and just being ourselves.


Friday, 2 July 2010

Will trade fish for chocolate.

So today, after a longish delay mainly caused by my poor memory, eight of our Mollies went to their new home at Mog's school.

And then a bit of a chat later, ten of them swam off to the Wahooligan's Aunt for a new life of luxury.
Auntie Wahooligan brought Wispas. Many Wispas. We like her! And hope her Mollies need replacing or reinforcing fairly soon .

It hasn't come a minute too soon. Forty Mollies en masse are a little alarming. As I walk past the tank they congregate in the corner nearest to me, gawping and gaping. I stand up on a stool; they swim to the top of the tank. I bend down to the medicine cabinet underneath; they swim to the bottom. I walk past; they swivel. It's off-putting.
And they've eaten most of the plant life, the four adults have died (but none of the other older fish, nor, as far as I can tell, any of the younger ones), and the filter impeller is blocking regularly. Mmm, clearing fish sludge out of propellers; a truly delightful way to spend a Saturday afternoon.

Mog's class are very happy; they spent the afternoon drawing big fish. Auntie Wahoo is very happy to be a parent as well as an Auntie. And I'm very happy; our feed bill should have halved!

So, if anyone else is interested, I'm open to offers. They don't have to be Wispas. I'll take straight Dairy Milk; I'm not proud.

Meanwhile, since this seems to be an animally post, an update on Grolly. She's had all but the final inch of her tail removed. This stump is definitely healthy, and despite the anaesthetic and op pain, she seems brighter than she was yesterday, jumping all around the sunoom and looking for a means of escape. And after a weekend with her imprisoned in the sunroom, I might be too - I've still not got all the poo out of the curtains from her last incarceration.


Thursday, 1 July 2010

After a long night of spasm, Mog had yet more this morning, which finally resolved itself after 2 hours of crying and writhing, at which point she moved from plank to limp and asleep.

We went to the vet this morning. And Grolly needs the remaining 2 inches of tail removing as they won't heal but will leave a little bare boned stump.

We went to meet friends. Joined the queue in the coffee shop just as Little Fish's TA rang to say could we fetch her please as she'd had five bowel movements since 9AM.

We fetched Little Fish and pondered the logistics of diarrhoea and big girl pants when you have limited sensation and no ability to run for the loo. It probably should not have taken me several hours to decide on pads.

And then the meds wore off, and Mog went back into spasm, crying and twisting and arching and being miserable until the next dose finally kicked in, at which point she slept for 20 minutes, fitted for another 20 and then sat, not comfortable, but not in spasm either, unless we stood up, bumped her chair, touched her feet or generally lived life.

And then the meds wore off again, just in time for bed...

So now she's had her regular meds plus the new Tizanidine, but can't have anything else just yet. She doesn't want cuddles, doesn't want to sit, doesn't want to lie down, doesn't want to do anything but presumably isn't enjoying being this miserable either. Norah has been rejected in favour of Joseph and his dreamcoat, but that's not much better either, she's just one frantic little girl.

And then I sit down, having posted one child into bed and carefully ignoring the festering laundry pile. And I see my brother has had a far more frustrating day than I have.


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