Thursday, 30 April 2009

The downsides to this life

I love this life of mine. I love the girls, I love our optional extras, I love the fact that I get to stay at home and cuddle my girls and sometimes make it better and other times comfort them for the things I can't make better. I love watching Little Fish learn things and it delights me when she show's me today's new skills. I love seeing how Mog draws people in and then kicks them in the kneecaps when they don't notice her new shoes fast enough. I love being able to meet friends for lunch and laugh about the things we'd quite possibly be crying about if we were alone. I love the fact that I have friends who will calmly remove the disgustingly coated clothing from under the buggy and sponge it off without even wincing first rather than run screaming from the room at the mere thought of it.

I love the fact that my whistle makes Mog smile, that the Wahooligan will snuggle in when I sing a song, that Little Fish still thinks her bottom sings to her. I love the fact that this life has allowed me to return to live in the town where I grew up, and that I can never walk through town without meeting someone I know to talk to.

But there are times when I really hate all this. And it isn't the times people might thing. Watching Mog fit is horrible, yes, but that isn't it. Dealing with the various poo rivers and poo mountains isn't especially pleasant, but I can live with that too. Helping Little Fish come to terms with the fact that she really can't walk however much she wants to is hard, but it doesn't make me want to walk away from it all. Even the endless paperwork I'm so far behind on isn't what I hate.

I hate feeling powerless. I hate the fact that today a friend phoned, hugely distressed, and I couldn't just get up and go to her. I hate the fact that it is always down to other people to come to me, and in this instance it just isn't possible. I hate that when my daughter died, this friend cancelled work and dropped everything to run to me, and yet I can't return the favour.

I love the fact that I have friends across this country and around this world, and I hate the fact that when another friend has a crisis I can do nothing except sit and pray about it. How can it be possible to be so close to someone living 3000 miles away, and yet be so far from someone living just 20 miles down the road?


Wednesday, 29 April 2009

Shopping for boys

is no fun. Especially here, in the one shop which still sells children's clothing.

Now if I'd wanted something for the girls I had some choice.
Quite a lot of choice, actually.
But apparently boys don't need choice. So what we got was this:
But then, roadside pukers can't always be choosers. And it does at least nearly fit...

On the plus side, I may have found a way to skip the queue when handing children in to preschool. Take one small child in a buggy, face the many slightly earlier mothers with their super clean children, and watch one small child do a projectile vomit. They decided we didn't need to wait our turn. And Little Fish decided it was the most exciting thing ever and totally forgot to worry about who was picking her up.

One small child mostly mopped with the aid of a couple of muslins and a packet of wipes. Puke puddle on lap cunningly disguised by artfully draping child with designer cardigan, I called in at the chemist for dioralyte on the way home. And was then beguiled by the scent of fish and chips, and decided to grab myself some for lunch. I put them into the buggy's basket, carefully positioning them away from any drips, and headed home, thinking to myself that the vinegar should be soaked into the chips nicely by the time I had finished cleaning the small child, and so I ought to have just long enough to eat them before our next appointment. It was only after this that I realised just possibly the reaction of the average parent to a small child's projectile vomit would not be "oh, better buy chips for lunch as won't have time to cook" but something more along the lines of either "yuck, sick!" or else "oh my poor baby, let's rush you home and get you sorted out". It's possible I am no longer entirely normal...


Monday, 27 April 2009

Little Fish the Navigator

Scenes from a Mountainside, somewhere in Switzerland (Ballenberg, to be precise).

Friend and I wilted in the heat after pushing the girls straight up the mountainside. There's a map on the website. It lies. The path between Ticino and Central Switzerland is not a gentle straight line which just happens to cross one or two gradient lines. It's a zig-zagging, hairpin bend, walk straight upwards holding a giant buggy over your head, semi paved with giant boulders and a sheer drop kind of a path. Happily, we were in Switzerland, which appears to be a nation incapable of watching tourists struggle*. So, having been warned by several people that the path would be "dure but not unfeasable", other strangers stepped in, teams formed around the girls' chairs, and we were marched up at a pace which certainly helped reduce the queue behind us but did nothing for ourselves. Well, except get us to the top of the path, obviously. Mad dogs and English Women, out in the midday sun.

So, Friend and I reduced to limp puddles, Little Fish took charge. She took the map and ran her finger arcoss the route. And then got annoyed with us for laughing at her and insisted we followed on.
And then found us a pretty houseAnd gave us a "see, I knew where I was going" grin.

And then posed us for a photographShe'll go far. Very far. Like back down the side of the mountain, if she isn't very careful


*sometimes it would have been more useful to have been allowed to struggle. There was the woman at the train station for example, who refused to allow me to get out at the stop I wanted, because she thought I wanted level three where the customer services were, and I wanted platform three, where Friend was waiting with most of the baggage. We nearly missed the train whilst I summonsed up what little German I had to explain "I have a friend there." She looked confused. It was only later I realised I had been saying "I have a happiness there." Oh well.

Then there was the guard at the next train station who firmly escorted me into the lift and down into the station. A shame he hadn't noticed us leaving the same lift 30 seconds earlier; what he mistook for dithering about how to operate the lift (tip: summons the lift, enter, press the button, depart) was in fact dithering about which side of the lift Friend was waiting with second small child.

The couple in the restaurant who helpfully escorted us out through the double doors and onto the pavement. We'd only been looking for the menu. Again though, I suspect asking for a menu rather than a "we can to eat please" might have helped.

And the guard who insisted we ran the full length of an insanely long train to enter the final carriage because it was very definitely the best carriage for children. Why? Because it had a playroom upstairs. I suppose it was nice he didn't notice the wheelchairs...

Sunday, 26 April 2009

Mog the Undecided

We went to a birthday party today. Another of those "we were told our child would never reach this age" milestone parties. Big cause for celebration, and the child at the centre just as pleased as everyone else around her. Lovely.

There was an entertainer (Mog was not impressed, Little Fish was enthralled, and the Wahooligan lay down under the table and shouted). There was food (Mog tasted the cheese and choked, Little Fish ploughed through most of the menu, and the Wahooligan lay down under the table and shouted). There was music (Mog sang, but reluctantly, LF whizzed to the beat, and the Wahooligan lay down and you've got the picture now). And there was face painting.

Little Fish was very keen to try it, Mog was more neutral. Little Fish chose flowers, and Mog sat and tried to kick the Wahooligan. Little Fish sat still and silently until her face was finished, and then informed the face painter as she was about to pack up her paints that "my sister needs you". Mog was less keen. Little Fish and the painter picked a design together.Mog was unimpressed.

Little Fish was pleased though
"I got same as Mog me, same dress, same jumper, same face painting she my sister we got same."

And the Wahooligan lay under the table...

Mog can't make up her mind. She loves to be noticed. She likes people to comment on her shoes and has no problem with kicking them until they do. She likes her clothes and takes an interest in her hair styles. She will take any amount of adoration, provided it's sincere and not patronising. And she likes to stand out from those around her.

Little Fish loves her bigger sister. She wants to copy her in everything. She wears uniform to nursery, although it's not compulsory, because Mog wears it to school. She has to be restrained from wearing the nursery uniform to preschool, where it would definitely look odd. If Mog chooses something, Little Fish wants the same thing. This goes for clothes and hair and baths and even hoist slings and feeding pumps.

Mog is generally underwhelmed by this. She likes being herself and she definitely gets fed up of being "same like me us together". But, she also gets far more attention when she and Little Fish are dressed identically. More people come to say hello, more people notice her outfit, and if people see Little Fish whizzing around she'll grab them by the hand and drag them over to Mog to show them "my sister same as me". This, Mog likes. So now she can't decide, is dressing the same as Little Fish an annoyance to be endured, or an advantage worth getting excited about?

I think she's going for the "I will rise above all of this, I am far too cool to take any notice at all (but I will complain if it all stops) look".

And the Wahooligan? Released from the table, the Wahooligan is lying in the cot, munching on a cloth and shouting.


Saturday, 25 April 2009


Today three children managed to get through
  • 1 set of bedsheets
  • 3 pairs of pyjamas
  • 3 chair covers
  • 7 sets of day clothes
  • 8 muslins.
The Wahooligan's tube leaked 5 times, 3 times during just one feed, once during a different feed and once for no reason whatsoever just regurgitating stomach contents. Mog's tube leaked once, draining her evening's medication handily out onto the floor. Little Fish's tube did not leak at all; nor did her bladder and I could only get minimal volumes through the cath. I'm suspecting that this is possibly not a good thing - can't decide whether it would be better for her to flood the bed (again) tonight and for there not to be an issue or whether I'd prefer to stand a chance of getting a reasonable night's sleep and giving the washing machine a Sabbath. Does this make me a bad person?

The Wahooligan needs 1-2 hours' sleep during the day in order to stay happy and to sleep at night. Ten minutes was all that happened today; cold wet milky backs are apparently not conducive to naps. Tears until bedtime and then a big contented sigh and heavy eyes closing at once at 7. And now the Wahoos are starting up again, someone tell me this isn't it for the night now?

I woke up at six this morning to the gentle sound of the Wahooligan's morning chuckles. Lovely. Even more lovely since it meant I was waking at six not three - always appreciated. Pillow over the head delayed getting up until Little Fish decided to remove the duvet from her own head and shout for Nippy removal. I'm not overimpressed with her people skills though - "You take my Nippy off Mumma you cath me I sit in Wahooligan's cot and you have a shower you bit smelly". Thanks, kid. However since she followed it later on in the morning by stroking my washed but unbrushed wild morning hair and saying "I love your hair Mumma, it very pretty very stylie" I might forgive her. Some time. Next year maybe.

So, up at 6. 30, children decontaminated, fed, decontaminated again, house generally disinfected and various stenches (mostly not mine, despite what LF may think) removed. It somehow took four hours to get the four of us up and ready. How Friend would laugh if she knew. Things were slowed somewhat by the discovery that the cleaner had helpfully hung a load of washing outside yesterday and not told me; gentle rain overnight and this morning not entirely conducive to the drying process.

Quick trip out and then home in time for the next round of feeding and changing and cathing and medding and all the rest of it. If I start with Little Fish's cath each time, I can just about get the whole round of feeds and changes and real food sorted before it's time to cath her again. I'm sure timings on this will improve eventually, probably about the point where I stop losing precious minutes staring into the open 'fridge looking for syringes or hunting through the bathroom repeatedly in search of clean socks.

Another round of "what exploded in the kitchen?" before stopping everything for a while to chat with visitors. The Wahooligan did the tube trick twice during their visit; nice timing as another pair of hands to help mop and change. Anyone know if you can change the end of an NG tube without changing the tube itself?

And then goodbye visitors, hello chaos my old friend. Tears from two children and amused laughter from the third, Upsy Daisy to divert and time for more food and meds and feeds and changes and then suddenly bedtime and more than bedtime.

And now three children in bed, and one me half feeling it should only be ten in the morning and where did the day go, and half feeling thank goodness the day has gone and can we call tomorrow off until I catch my breath please?

It's not all bad. We got out this morning; it took us four hours to get ready, but we managed it, we left the house, we all squeezed into the van somehow, and we managed to buy the birthday present we need for tomorrow. We also managed to buy a new ball for the Wahooligan, a couple of squeezy things for Mog's fists, and a wooden train on a threading string for Little Fish, but I think that's probably ok. And we met Grandad in Somerfields, and he stood guard over the little ones whilst I moved my van away from the car had parked in our boot despite the "please leave space for wheelchairs" sign on the back of it. Handy.

And we had the house semi presentable and the children all clean and fed and happy by the time our visitors got here. We acheived two things today; I'm happy with that.

Tomorrow we have a long list of Coulds, a medium list of Shoulds, and I need to review the Musts list. And remember the Don't Under Any Circumstances list too. The leap from two to three is a big one logistically. We're enjoying it, and we are managing, but it is a big change. I'm loving it, and mostly the little ones are too; I just haven't quite tweaked our routines into order yet (and for those who know us; yes there are routines; under that ocean of chaos is a bed of order and tranquility. It's just buried under the waves. Anyone fancy diving with me?)


Thursday, 23 April 2009

Special deliveries

Today, the postman brought a card inviting us to stick expensive stamps on it and post it back to the post office at which point they would post a letter back to us. Didn't give any details about the letter except that we needed to pay for the privilege of receiving it. I'm not sure if that counts as a delivery or not.

This little lot landed on our doorstep at 8.30 this morningOne month's supplies of disposable plastic bottles and lines for the girls' feed pumps. That doesn't include the feed itself, the syringes, the vast quantities of medication, nor any of the above for the TA Kid (henceforth known as the Wahooligan for reasons best known to those familiar with the wee beastie child).

Delivered to the GP surgery not to the house but collected from there by us, the following collectionOne month's incontinence supplies, again for my girls but not the Wahooligan, and not including the wipes or gloves or aprons or spray or any of the other bits of cleaning equipment. Oh, and not including the catheters either which do get delivered, one giant box containing many packing peanuts and one smaller box which then contains ten cigar sized boxes and a small bottle of alcohol gel. I get the whole "we are discreet" thing but surely just not printing advertising on the outside of the smaller box and then sending that by itself would do?

This pretty thing was delivered to my phone via Little Fish, who is very pleased with herself.Myself, I think she's managed to perform some kind of brain scan on me whilst I wasn't looking.

And last but by no means least, Mog was delivered home to us in style
I wonder what the good citizens of Oxfordshire made of that as it went past!

ps - she was in the car not in the wheelchair, although had they managed to get it upright I'm sure she'd have enjoyed the ride.

Wednesday, 22 April 2009

Tuesday, 21 April 2009

Note to self:

Omeprazole is the clear liquid stored in the 'fridge.
Domperidone is the clear liquid stored out of the 'fridge.
The two are not interchangeable.

If three nappy wearing children are all living in the same house, it does not automatically follow that they can all three wear the same size nappies. And since you know full well they do not wear the same size nappies, it therefore does follow that the wrong nappy on the wrong child will cause big leaks.

On a similar note, small boys do not look good in Makka Pakka pants.

If you hang a tube feed on a doorhandle and attach it to a small child, moving the child away from the doorhandle will result in a milk bath. These, contrary to myth, are not good for the complexion. Or the hair. Or the floor. Or the wheelchair.

Alcohol gel is good*. It's useful, it's portable, it backs up soap and water nicely. It does not replace soap and water. It has a handy side use for cleaning bathroom tiles (101 uses for a babywipe and a squirt of Purell number 63). Under no circumstances whatsoever should it come into contact with eyeballs. So for future reference, if using it to clean glasses (101 uses for a babywipe and a squirt of Purell number 87), make sure there isn't a large blob left on the inside before returning the glasses to your face.

Whilst a drop of shower gel on a babywipe (1001 uses for a babywipe, of which the earlier Purell related list is a subset) can indeed help towards a quick freshen up at times when a shower is unfeasable, replacing the shower gel with Purell is a Very Bad Thing and one which should not feature on any list at all. Ever. Even if it does reach the parts no other cleanser can reach.

When attending a hospital outpatients appointment, do not ever assume that "oh no, it's only for bloods, it won't be long" means that buying a 2 hour parking ticket will be the safe option.

If you have a list of twelve phone calls to make, it is safe to assume that nine of these people will be unavailable, and three will be forgotten. Of the unavailable nine, seven will return your call at times when you cannot answer the phone, and the remaining two at times when you accidentally answer the phone, for example whilst putting a small child to bed or thirty seconds before finally being called in for the blood tests. In the three minutes your phone is switched off, a similarly safe assumption may be made that three other callers will leave messages unrelated to the twelve on the original list. Of these three, two will ask you to return their call but leave no number. The third will leave their number but the message will be incoherent. In the meantime, you will receive approximately thirty seven text messages, some from friends and some from professionals, and all of which will receive a cursory glance and a "must get onto that later".

Each phonecall you do actually manage to make successfully will lead, not to an item crossed off the to-do list but to thirteen more items added to the list, at least three of which will involve making further phone calls.

Buying the parking ticket will remind you that you have not yet replaced the blue badge on the dashboard. This will lead to several hours of gently wondering where it might be, before remembering that it is in fact in the wallet containing passports, court papers and essential medical info last seen at Heathrow after going through security. A dim recollection of stuffing said wallet into Friend's rucksack will lead to panicked communications confirming Friend does not have said documents any more.

When trying to replace one's wheelchair accessible van with another, slightly more spacious version, it is probably best not to continue to push the salesman who informs one that "you won't like that vehicle and this one's not for sale". Go elsewhere. Although the "we sold the last one of those last week" chap and the "oo you won't find anything like that anywhere" bloke probably aren't the ideal either. Somewhere, out there, there exists a converter who can provide what we want. Stop spending time phoning the ones who can't and won't.

And when the garage takes your van, keeps it for a fortnight then fails to return it as promised, returning it three days late and unrepaired, it is probably best not to try to phone and find out why.

To recap; today I had a list of twelve phonecalls. This has inexplicably multiplied with no single issue being totally resolved. I have lost our passports, I cannot park properly without the blue badge, my eyes hurt, I have one very cold bottle of Domperidone, the laundry monster has had an extremely large feed, I have an even longer list of must-dos for tomorrow, and I'm running low on coffe. I am tired.

No children were harmed in the making of this blog.

*as a hand sanitizer, not a drink.**

**although after today I may consider it.

Monday, 20 April 2009

Attack of the mutant laundry monster

The trouble with going away is that you have to come back. And when you do, there's quite a lot to catch up on.
She fought back well thoughAnd so did I; six loads in and it's nearly vanquished. Only problem is that with three children, all of whom can produce a variety of different bodily fluids almost to order, the "clothes which need washing but which were clean when we got home and can therefore wait a bit" pile is now very nearly as large as the "clothes which have been festering in a fortnight because they were too disgusting to even think about handwashing in a nice hotel" pile.

Ah well.


Sunday, 19 April 2009


Have boiled a camera-full down to a few, for anyone interested. And for anyone uninterested, I promise normal service will be resumed shortly. As soon as we have figured out what passes for normal anyway*. I understand there may be ads appearing beside the slides; I have no control over what ads they are. It was just a quicker way of bumping them up here. So please don't shoot me if they're horrid!

Click to play this Smilebox slideshow: Switzerland 2009
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*which reminds me; I'd really like a cover for my iPhone with "Don't Panic" written in large, friendly, letters on the back. Anyone know of a good source?

Saturday, 18 April 2009

Home again

Six million photographs
Six hundred million memories
six thousand billion loads of washing to do.

And it can all wait until morning.

Came home to a beautifully cleaned and tidied house, our cleaner having had a field day with us away. And to the somewhat less welcome sight of an empty drive - our van was supposed to have been returned yesterday and has not been. No messages, no letters, no means of contacting the garage until Monday. And a gloomy feeling that it won't magically reappear 9AM Monday morning.

Small Fosling returns tomorrow, hurrah. We've had a lovely holiday but there was definitely someone missing from it. However, this means, if the van doesn't return by Monday morning I am going to have to somehow ferry three children with wheelchairs and various other assorted equipment to the hospice on Monday evening for Mog and then across the county on Tuesday for other appointments. Fun times.

Can't do anything about that tonight, so will settle for being happy about the fact that we are all home, we've had an excellent holiday, and the two girls are sleeping.

About time I joined them, I think!

Friday, 17 April 2009


A fortnight felt like forever when it began. And suddenly today was our last day. We decided to ignore the weather forecast and take a boat to Spiez. Good choice. Fabulous views, minimal effort. Always handy. The plan was then to prowl around Spiez as many a mythical schoolgirl has done before us, and then catch a train back to Interlaken and enjoy a day well spent. We did the boat. Prowling was hampered by the small issue of Spiez being based on the side of a mountain. We hiked to the train station. Then sat exhausted and drinking coffee before catching a train back here again. One final meal and two girls in bed, now two friends just sitting chatting and making the most of one last evening together before home and reality again.

One seized day.

Wednesday, 15 April 2009


Three trains, one bus, four cable cars and ten thousand feet

And then this.

And then four cable cars, one bus, one train and a final bus back to our hotel again.

Totally worth it.

We finally found a way to keep her clean

Since we arrived, Little Fish has been permanently coated in a layer of grime. The streets here look amazingly clean, not a piece of rubbish or a spec of dirt in sight. And yet a thick layer of black dust has somehow transferred itself from pavement to wheelchair, and from wheels to hands and there to face, stomach, legs, and anything else within reach.

Yesterday we found a solution to that, for some reason, seems to be more effective than keeping her chained* to the bathtub. Fun times.

*would just like to add we don't actually chain her there. Tempting though it may be at times

Some more Interlaken pics for Michelle

More Interlaken

Monday, 13 April 2009

Ballenberg museum

We walked. We walked halfway round a mountain. There was an open air museum. It was steep. Beautiful, but steep. We are tired. Very tired. And also a little achey. But I think we saw Heidi's house. It was fantastic. But halfway up a mountain. We are tired now.

Anyone know the german for "are there steps?" This would have been handy today.


I could get used to this. We all could. The guidebooks all said Interlaken was only good as a place to start from. We're finding plenty to do here. Sunday we spent a blissfully peaceful day just pottering around near our hotel, crossing bridges and watching dogs and trains, loving the mountains everywhere, and stopping for coffee at regular intervals. A pause, a child centred slow time day, with time for jigsaw puzzles and silly songs. And many many giggles. A fabulous lunch, with the sound of many church bells echoing around the valley, and a waitress who kept bringing more chocolate to help us celebrate Easter. We like.


Sunday, 12 April 2009

Risen, Conquering Son!

1On the first day of the week, very early in the morning, the women took the spices they had prepared and went to the tomb. 2They found the stone rolled away from the tomb, 3but when they entered, they did not find the body of the Lord Jesus. 4While they were wondering about this, suddenly two men in clothes that gleamed like lightning stood beside them. 5In their fright the women bowed down with their faces to the ground, but the men said to them, "Why do you look for the living among the dead? 6He is not here; he has risen! Remember how he told you, while he was still with you in Galilee: 7'The Son of Man must be delivered into the hands of sinful men, be crucified and on the third day be raised again.' "
Luke 24.

Peace and strength to you!

Saturday, 11 April 2009

Moving on

I'm not entirely sure whose idea it was to make this a two center holiday. I'll blame Friend; it seems a little easier than blaming myself. All that packing, and no flight home at the end of it. A long day. But oh, so worth it. From a nice hotel to an outstanding one, from distant mountains to mountains tapping our shoulders, from steep stairs to a lift, a kettle, and a balcony with stunning views. We like.

Above pic taken from the train. Awesome.

Friday, 10 April 2009

Mount Pilatus

Tonight, there is not a part of me which does not ache. Not from walking, not from lifting, not from any kind of exertion, but from several hours spent laughing to the point of hysteria and beyond with Friend. There was a time when we did this regularly. When we shared a house, evening after evening would be spent with tears of laughter rolling down our faces, utterly incomprehensible to our housemates and workmates. It's been far too long.

I can't explain what we were laughing about. It doesn't matter. There was an absent plate of chips, the promise of a kettle, and a distinct lack of hel. Totally unfunny to anyone not the two of us. So instead I'll tell you why the unlaughy muscles ache- Mount Pilatus. Legend has it this mountain was haunted by the ghost of Pontious Pilate. It seems a little unlikely, but oddly appropriate for our Good Friday expedtion. A bus, and then teeny tiny gondolas up the side of the mountain. Mog and I in one, Little Fish and Friend in the next. Panic at seperation reduced by regular waving through the windows. Mog and I livened things up by singing Tell Out My Soul; behind us LF and Friend enlivened the countryside with shouts of "Wheeeeee!" and "Bump bump bump"; shouts which floated up to us faintly over the sounds. Of cowbells, sheep bells, and the tinklerushroar of the Spring Thaw. Beautiful.

And at the top, a truly truly awesome view. Mountains rising above hazy clouds, lakes and valleys like Lego from a stepladder, snow and ice and ageless cold. Amazing. Oh, and a rather nice outdoor restaurant where we ate Rosti and took the above photo. Out of interest, we took the pulse ox, and Mog demonstrated her ability to maintain her sats at high altitude. This should be handy next week. We didn't test our own. Perhaps we should have; it might have persuaded us against our next decision, which was to walk down the lower third of the mountain. Yes, with the girls and their chairs. No, we didn't think this through. The walk was advertised as being easy and taking 1 hour 10 minutes. 30 minutes in, having acheived perhaps 500 yards, we realized that walking down the side of a mountain is perhaps not something to me done with two children in chairs. We then had the somewhat questionable pleasure of climbing back up the same mountain and finding cable cars to take us home again. It's prettier when seen from above anyway I'm sure.

Staggering off the cablecars we wobbled down the road to the bus, which gave us enough time to recover before climbing the stairs back to our hotel rooms. Given how hard we have found this; it does seem a little unlikely we'd ever have managed the side of a mountain. We'll do our best to remember this in the future.

We should have packed, should at the very least have done some sorting out, but instead we shuffled the girls into bed in short order, and then giggled and got extremely silly with the kind of silliliness which can only come when you know each other inside out. And now we ache. And wheeze. And now we must sleep, as tomorrow we move to Interlaken. Rumour has it our next hotel has a lift. I can't tell you how happy that makes us.


Thursday, 9 April 2009

One of those days

An accurate reflection of the day I think. Or at least, of how I felt for much of the day, having spent much of the night up with Mog. Mog herself had a quiet day, snoozing through most of it and waking up just in time to demand a taste from Friend's dinner plate, and then rather unfortunately waking up just now as I climb into bed beside her. Joy. Gives me a chance to blog before sleeping I suppose- I'm sure she's just thinking of you all really. No more seizures though; I'll take a little insomnia over that any time.

A nice day. A revised plan given the night's activities, but one which still pleased us all. Little fish and I did the breakfast thing leaving Friend with a sleeping Mog. Four of us all finally ready somewhat later than planned, and then all of us to the station to jettison most of our luggage. It is great to know it will be waiting in Interlaken. And surprisingly stressful to try to sort out what we can manage without for 48 hours. Only 48 hours, so a big temptation to try to do without most of it. But 48 whole hours, and the knowledge of what can happen in that time...

Still, baggage dumped, and acornsr of the old town still to explore. The Hofkirch admired, the Lion Monument discovered, and a lace shop visited. The latter may have been a mistake. Little Fish has morphed into little Grub Monster; for some reason although the town is the cleanest place I have ever been to, there is a black grime covering the streets which transfers to her wheels, and from there to her hands and then face, clothes, arms, sandwiches, andeverythibg else she touches. The lace lady was very forgiving.

Raclette for lunch, hurrah! A proper Chalet School outing meal. Mog decided this was worth waking up for, especially when accompanied by mountain music. Little Fish decided it was worth hiding from. We're not sure why.

A leisurely waddle stroll back to the lake, where we decided no matter how beautiful the lake cruise, we were not quite up to carrying the girls up to the top of the boat for it. Friend vetoed the pedalos too, so we hoofed it back to the hotel instead, where Mog had another big rest whilst Little Fish stripped herself off and then dismantled a ham sandwich, taking great interest in the fact that slices of ham applied directly to the skin are "a bit coldy, Mumma" whilst simultaneously refusing to eat any of it. Eventually I threw it in the bin, causing sons and lots of "that my favourite"a. Some days I seem to exist to frustrate her. Yay for me.

Bed for girls and silly time for grown ups. A giggly evening full of conversation incomprehensible to anyone not the two of us. Lovely. And now bed, and hopefully sleep, if Mog settles before waking LF. Tomorrow we tackle Mount Pilatus. Legend has it the body of Pontious Pilate was drowned in a lake at the top. Unlikely, but appropriate for tomorrow I think. And then on Saturday we leave Luzern for Stage two of our holiday. It occurs to me that our week could have happened in another family's weekend. The town could have been thoroughly explored in a day, mountains could have been conquered the following day, and the family have moved on. And we've spent a week doing small things. But that's ok. Slow time again; time to look and see and appreciate things. Time for Little Fish to experiment with my camera- and if anyone knows how to replicate her above effort I'd be grateful; it seems strangely appropriate. Time for streets to become familiar enough that a little child can lead us through them, time for a larger child to rest in the shade. And time for Friend and I to laugh ourselves silly over nothingnesses. So yes, we might have seen more, done more, than we have. But I'm not convinced we'd have achieved any more.

And now Friend's light is out and Mog's sedative has taken effect. And I must join the sleepers. Night folks,

More from Lucerne

Another quiet pootling day today. Our mission; to find a second wooden bridge, to see the city wall, to eat pastries and drink coffee in a Conditorei, and to sit down at lunch time. We acheived some but not all of that. The second bridge, painted with scenes from the danse macabre, was impressive. The city walls we saw from a distance and admired. The bakery had no seats, and the yummy pastries turned out not to be filled with confectioners custard but with a very strong cherry liquour. Not quite so good for the littlies.

A good day still, if you excuse Little Fish's prolongued tantrum over not being allowed to push her suitcase through the town. She's four, I think we can probably just about excuse it. Friend is developing a good "nothing to see here, nothing to do with me" skin which is handy at these times.

Back to the hotel early and time to pack half our bags; such is the efficiency of the Swiss rail system that we can send these on ahead of us to our next destination. That's our job for today then; to get the four of us plus four ridiculously huge cases from here to the train station. And then recover with coffee. And properly creamy custardy cakes. Followed by apriwl aroundthe remaining section of the city, possibly followed by a short boat trip to a child's playground if LF is in the mood. And if Mog makes a proper recovery; she is at present slumping beside me fighting off a dose of Midazolam having spent enough of the wee small hours twitching and jerking to render it necessary. It has worked, the seizure monster has been slain for now, but she is scared to fall asleep again unless there is a return. Which is why I get to be posting this now. Lucky you!

Wednesday, 8 April 2009

Code Brown

Consider yourselves warned.

But on Friday, as my morning happened, this little ditty somehow made its way into my head.
For anyone familiar with the campfire song, it may be sung to "Three little Angels, all dressed in white"

And there was poo on the nappy,
Poo in his bed
Poo up his back, and
Poo on his head.
And I cleaned and I tidied
"Oh Bother"'s what I said*
And just as I had finished,
He did a wee instead.

I'm enjoying my holiday with two nice clean girls. They'd never do something like that, would they?

*or words to that effect

Blogging by mobile.

This should be a rather nice little view from yesterday.

Alternatively, it'll be a big wodge of cryptic numbers and letters.
Let's find out!

We had another pottering about kind of a day yesterday. Backwards and
forwards over the Chapel Bridge and a reasonable amount of shopping.

The girls have new shoes. They are very very happy. Friend and I are
struggling to come to terms with the fact that the chocolate we bought
yesterday was actually more expensive than the girls' new shoes. Oops.

It's an interesting experience for Friend and I; holidaying together
with my girls. She finds my ability to get the three of us up and
dressed in less time it takes her to do so amazing; I find her
inability to get herself up and dressed in the morning in anything
less than an hour fascinating. It's a good job we're friends! Little
Fish watches in awe as the routine is continued, occassionally asking
plaintively if it can be breakfast time yet. Mog looks on and takes
note of future demands. And the two of us move around in our morning
dance, me shuffling children into clothes and spares (clothing not
children) into bags, she inexplicably shuffling pieces of paper from
the pocket of one unworn pair of jeans into the pockets of another
unworn pair of jeans. This is fine; if it takes an hour then it takes
an hour, and we will be ready by the end of it. It's when Friend feels
bad about the hour it needs to help and starts trying to help we have

We have been friends for long enough thy her inability to function
speedily in the morning is entertaining rather than infuriating. I
hope we've also been friends long enough that my inability to take
things slowly in the morning, and the girls' needs to be up and doing,
is also endearing not ennervating. We've survived so far. And now
Friend is in the shower so I must dress the girls.


Edited to add that, to her enormous glee, the time I spent writing this ensured Friend was ready shortly before the rest of us. Oops!

Monday, 6 April 2009

On top of the world

Looking down on creation and it's pretty jolly fabulous actually.

Mount Rigi. So ridiculously sillily high we were all breathing a little wonkily at the top, and Mog was definitely pleased not to have to do anything other than sit back in her chair and watch the rest of us struggle. Gazing in awe not just at the sight of such amazing mountains but at the more intrepid mountain goats hikers walking past us with packs larger than themselves as we concentrated on staying upright. Turns out eating vast quantities of red hot chips helps with the acclimatisation. We'll remember that for next time.

A truly beautiful day. Clear blue skies revealing more mountains surrounding our hotel than we've seen up til now A pleasantly cool breeze as we took the boat from Lucerne to Vitznau. An insanely steep mountain railway. Fantastic views from the top. Pretty pastures and the gentle tinkle of cow bells far beneath us as we took the cable car down to Weggis. And another peacefully pleasant boat trip back to Lucerne. Fabulous photos, trapped on the camera until my phone can persuade the laptop there really is Internet access here. Two tired but cheerful children, and two pleasingly achey adults with a nice sense of acheivement.

Taking a moment here. We just took two children up the side of a mountain. We just took two seriously disabled non-walking children up the side of a mountain. We just built ourselves some pretty amazing memories, and we came back downready to try it again with a different mountain another day. Oh, and we all had fun.

I am mostly liking the helpfulness of everyone we meet here. Occasionally people are too helpful; like the woman who took one of our bags and insisted on carrying it for us. This would have been great had she first checked where we were going. Or the man who gently but firmly escorted us back into the lift we'd just emerged from and sent us back into the bowels of the railway station. The many people who seek to help out by helping to lift the girls' wheelchairs over steps, but who inevitably do so by grabbing at removeable parts... Note to any passing Swiss reading this: really, thank you for the help, we're truly grateful. But please check we need it first!

Tomorrow we're going to try out the buses. For some reason we're more phased by these than by the mammoth trek we managed today.
And now it's late, we had an early start, the girls are asleep and I should be too. Take care,

Sunday, 5 April 2009


The weatherforecast was wrong. This is the good news. We have had a truly beautiful day just pottering about town, crossing ancient bridges and sampling less ancient pastries. Quoting Chalet School wherever we go, and discovering I can in fact understand and even speak rather more german than I had thought. Yay me! Did have to resort to "one this and one this please" for lunch though which was somewhat less impressive but we did achieve food so I don't quite count that as a failure.

Our hotel is great. Not the 4 bedded dorm we were expecting at all, but a nice suite of rooms with space to spread. Lovely. That's the good bit. Less good is the room location- on the second floor (3rd for my US friends!) with no lift. There is a coke and beer machine halfway up though. I can't decide whether that's great for the convenience or less great for the fact we have to lift the girls over it every time we come or go. Practice for the mountain trips though!

Tomorrow we're trying a mammoth trek- boat, mountain railway, cablecar then boat again and finally taxi. Should be an interesting experience; the lady at the tourist info booth blanched slightly at the idea of even attempting it with the girls. I'll let you know how it goes.

No photos as the laptop says this wireless connection doesn't exist, whilst my phone says the Internet is always out there but the photos are not. I'll attempt to combine the two at a later date.

And now it's bedtime.
Night all,

Saturday, 4 April 2009


The last day of term for Mog, the first day of the holidays for Little Fish, and the deadline for moving the TA kid elsewhere. No hatemail please; no passport and no plane ticket so no possibility of coming on holiday with us.

A placement sorted late on Thursday afternoon. A good placement; I'm very pleased and I know the TA kid will be loved and well cared for. This is good, and finally I can tick one thing off my worry list, and get on with the many many other things instead.

One check in bag each, plus an additional bag for each of the girls to carry essential medical supplies.

One carry on bag each, into which I somehow need to shoehorn a suction pump, a ventilator and battery, a feed pump, assorted catheters and an unfeasably huge box of medications. Regulations have apparently changed (although there's nothing on the website confirming this), and it is no longer possible (indeed the individual informing us of this claims it has never ever been possible, funny how we managed it last holiday, and the one before that, and the one before that then - yes, all after the regs changed) to take extra carry on baggage even if you have a child who can't breathe without it. Marvellous.

One wheelchair per child.

Minor hiatus with the discovery that what I had thought was our final bag was infact the case for Mog's three-wheeler; useful to have but means I am short one suitcase. This is fixed by shifting our dressing up box supplies out of its ancient case and onto the floor, and filling it with nappies and wipes, whilst uttering a swift prayer for it to stay intact for at least the flight out. Coming home doesn't matter quite as much; we can replace things once we're here.

I thought I'd be clever. The doses of Mog's drugs are nice and even at the moment; this means that in theory at least she could take tablets rather than the liquid versions of quite a few of her medications. Given the current restrictions on flying with liquids, and the complications involved in taking liquid medications through security*, I thought I'd try to get some tablets instead. I phoned the surgery, the notes were taken, the tablets duly prescribed, and the drugs were delivered in two plastic bags. Lighter than usual, I peeked through and saw the name of one drug on the side of a box, and thought no more about it. Mistake. Big mistake.

Did the bags contain the tablets as requested?
Did they contain the liquid version instead?
Or did they infact contain very little at all except a note to say drug unavailable?

This is not the best thing to discover at 7PM the night before you fly to Switzerland. A little panic ensued, until, in tearing Mog's bedroom apart, I discovered another bottle of the missing medication, cunningly disguised as a box of Mog's feed. Of course this means we are somewhat shorter of feed than I'd thought, but we have enough for our holiday and a few days afterwards, and right now that's all I care about.

Now I just need to find somewhere to put all this lot safely
but not before printing out the plane tickets, extra baggage allowance info, booking confirmation slips from the hotels, and the myriad of other minor bits and pieces which need shuffling into it.

I might sleep at some point tonight.

Of course, thanks to the wonders of time delayed posting, by the time you read this, it will all have been 24 hours ago (and oddly, that's calming me down as I write it!), and we will be in stunning Switzerland and hopefully well on our way to settling into our hotel.

I'm pretending I have not seen this weather forecast.

*at one point during our first trip to Florida, shortly after 9/11, it looked as though the only way to get Mog's meds through would be for me to taste all of them. Whilst I'd have quite enjoyed the deep sleep her several sedatives would have induced, I'm not sure I'd have been much help to the girls once in the air.

Friday, 3 April 2009

Happy Easter!

Mog came home from school on the last day of term wearing this.
I think it's safe to say she was seriously underwhelmed.

Her sisters were somewhat happier with the stacks of chocolate she also brought. Little Fish enjoyed wheeling over the folder Mog had made for all her artwork, and Mog herself consented to enjoy stroking a toy dog she had won in school.

A good end to a generally good term, I think.

Thursday, 2 April 2009

Letters from America.

So, this morning, I was all set to write a "hurrah; we've got it sussed - four of us up and dressed and all showered in the last 16 hours and everyone out of the house on time for school and preschool" type post. And then my mind started mentally composing it, until I suddenly realised we had in fact run out of time and were now officially Late For Preschool. This is a big deal; more than 2 minutes late and the gates are closed and you have to wait outside for the next 20 minutes. So we rushed.

And in rushing, we somehow left Little Fish's Easter Bonnet behind. So the TA kid and I walked back home and then back to preschool with it. It's a 5 minute walk each way. And in that 20 minutes I somehow managed about 8 phonecalls - not bad going.

And now we have the right carseat for the TA kid. One friend had a set of straps but no seat, another has seat and no straps. Together, they are rather more use!

A quick trip to Budgens with the TA kid. Chocolate for some children, emergency food for our flights on Saturday (which means more chocolate plus potted custard; we need squishy food which isn't fresh and doesn't need to be kept in the 'fridge). An apple and raspberry pie reduced so perfect for the freezer. A pork pie also reduced. Chocolate for different friends. And some Zantac and Rennies for myself. It wasn't until I put it all through the checkout I realised how that looked. Ah well.

Home then, and a big stack of post. Two letters for neighbours, oops. One set of bills, bother. One cheque from someone wanting us to have an extra special holiday; hurrah! And Presents!

Not really for Little Fish's Birthday, but things for me. Lovely.
A big fat parcel from Trina and Jophie

Incontinence pads, excellent!
Ah no, there's something underneath!

Two beautifully crocheted hats for the girls and our Meals For Wheels books. Trina and others have worked so hard on this book; it's a beautiful thing.

Telephones for the girls to play with
And popcorn, instant oatmeal, and marshmallow peeps for me! Hurrah! Food to eat to make me fat and a book of recipes to make me thin again - perfect!

But wait, there's more. Another parcel, from another friend in a different part of America. Michelle from The Tender Scribe sent me this
which she has made herself. The picture doesn't do it justice; it's beautiful. And so delicate.

Thanks, Michelle and Trina!

Wednesday, 1 April 2009

Happy Birthday, Little Fish!

Better late than never.

Little Fish was four on Sunday.

Four years ago she was born, and immediately whisked away for life saving, life threatening, surgery. For the next three months, she was in hospital whilst complication after complication was discovered, some treated, some found to be untreatable. And eventually she was discharged into fostercare in the hope that she could experience some normal family life in the weeks she had left to live. Different treatments were discontinued in the knowledge her life would be short.

She was a limp, grey, baby. Her breathing could be heard from down the corridor at the hospital, over all the many monitors and other babies crying. She was Baptised before leaving hospital; a small photograph records the event with the hospital social worker holding her as the chaplain carefully poured the water over her head.

Once with her fostercarers, she remained very fragile for a while. Her foster mother took her outside the first time it rained, letting her feel the rain on her face so that she would have experienced it before she died.

And yet, somehow, she didn't die. And she managed to do so much more than simply not die. Her breathing (when awake!) improved, her vocal fold palsy resolved itself, her kidneys kicked in, she started to babble and hold herself up and make herself known to the world around her. The loving kindness of her fostercarers, her temporary Mummy and Daddy, and her fostered siblings, worked miracles.

Still, the prognosis remained bleak. She would never walk, never talk, never learn to sit up or hold her head up, never eat or drink. She would be a sickly child. A referral went in for hospice care.

And yet, she continued to improve.

And shortly before her second birthday, she came home to live with us. She's now lived with us for more time than she had lived with her fostercarers. A nice milestone to have reached. The love her fosterparents were able to give to her enabled her to love them and to transfer that love and attachment to us. Nowadays when she sees her fostercarers she is happy to see them, and happy for them to go again. They have a place in her life, but we are her family. I am grateful to them today. I am grateful too, to her birth parents, for giving her this life she has.

And now she's four. To the outside world, she's a small child bursting with health. That amazing smile, a beautifully squidgy body, bright eyes, and non-stop chatter. And she is, mostly, pretty healthy. If you set aside the ventilator, the feeding tube, the catheters, the allergies, the wonky brain, kidneys, heart and who knows what else, she's pretty healthy. Actually, when you look at most of the things she does have rumbling along under the surface, she's astoundingly healthy. It isn't that she's sickly at all - more that, if she does get sick, it's likely to be serious. Thankfully, MRSA and other staph type skin infections (and one pseudomonas UTI) aside, she's never had more than a cold.

Reading that back, I'm thinking it's possible my definition of healthy has changed.

But setting aside all that, on Sunday she was four, and we had a birthday party. Her first with us.
We had cake
and friendsAnd pass the parcel, and presents, and party food.

And funHappy Birthday, Little Fish.

What day is it? And what's my name? And what have I forgotten?

Round oneAnd once that's done, seems like it's time for the next one, somehow squeezing everything else in between.

Happily, I have my cheesy grin girl
to keep me going!


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