Friday, 30 November 2012

Five years

Is a very very long time.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, 29 November 2012

Dear paediatric outpatients.

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

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

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


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


Wednesday, 28 November 2012

Lotty's gone Dotty

And we're back to driving Grotty.

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

A morning pottering and receiving phone calls.

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

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

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

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

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

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

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

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

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

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

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

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

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


Monday, 26 November 2012

Comments from the weekend.

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

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

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

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


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

Thursday, 22 November 2012

Tip and Fail

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

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

Anyone have one and know the secret?

Wednesday, 21 November 2012

Introducing Lotty

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

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


Tuesday, 20 November 2012

Picture of comfort.

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


Monday, 19 November 2012

New Chair

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

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

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

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

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

And I was not amused.

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

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

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

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

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

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

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

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

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

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


Sunday, 18 November 2012

The cute, and the not so cute.

First, Grolly. Those of a sensitive nature, or perhaps unused to the less pretty parts of complex medical needs may perhaps wish to focus on Grolly and then move on swiftly, without reading the rest of this post. Don't say she didn't warn you.
Next, weirdness. Mog's had a gastrostomy for about eight years, and I worked with children who had them for a good five years before that. That's a lot of feeds and meds, a lot of plunging syringes, making connections, blocking and unblocking. But I've never had this happen before.

 For those not sure what they are seeing, I am pushing some feed into Mog's tummy via her gastrostomy. The yellowish tube is connected to a syringe (out of shot, ran out of hands!), and I am pushing stuff through it. It runs through the button (white and clear plastic bit) and directly into her stomach. 

So far, so normal. 

What's definitely not normal is the purplish goo (her food) dripping out of the side of the button. That hole should have no direct connection to her stomach; it goes into a little balloon which we fill with water. The balloon holds the button against the side of the stomach and stops it falling out, like an earring stopper. 

So I'm pushing food in, it is somehow going into that water-filled balloon and then forcing its way out of the balloon port valve. Every day a new adventure. 

And then finally the gross post.Don't say I didn't warn you.

Here's what happens if you use mepitel on a burst blister, and the skin decides to go mad with healing itself, and grows through the mesh in the twelve hours the dressing is on. It's looking much better today, I'm pleased to say, although somehow the toenail has peeled off. How did I not notice the loss of a toenail? 

Both girls are falling apart a little. Mog's gastrostomy is still nastily sore, and she has another patch of soreness which isn't healing up. And the roof of her mouth appears to be leaking yellow goo, as of this evening. tLP is now toenail-less, whilst both her buttons are leaking, and her Mitrofanoff (artificial thingy whereby her bladder is linked to her tummy button via her appendix) is a little shocked too, after she attempted to insert a pencil into it to stop it from leaking. It's a good job we've got respite this week!


Thursday, 15 November 2012

Tia's 10,000

No, I'm not leaving here. But I have set up a new blog too - my 10,000 reasons . If I can find ten reasons to be thankful every day, I ought to have 10,000 in less than three years. And I figure they might not be terribly interesting to everyone else. But if anyone else feels like joining me to find their own 10,000 then please do pop on over.


Tuesday, 13 November 2012


She is truly a girl after my own heart.

I love the way she forms her letters, her courage in sounding words out, and the way she begins every sentence with "I am a" before remembering what she actually meant to write.

I love her big curly full stops, her enthusiastic openheartedness, and her freedom to tell people how much she loves them.

And I must get baking!

Monday, 12 November 2012

A farewell to B

Mog and I danced at death today. We weren't expecting to. But we were privileged to attend the funeral of a most precious friend, our beautiful butterfly B, who died so suddenly whilst we were on holiday last week.

Parents are not built to accommodate the death of a child. It's not supposed to happen. When you hold your previous baby, the hopes and dreams you have for them are more likely to include weddings, graduations, first steps and flying kites and endless enchanting chatter. We might imagine we hold in our hands a little mini-me, created to avoid all the mistakes we made ourselves. Or perhaps we're more realistic, and we hold our breath in wonder, wonder at the beauty of this new life; and aim to give them the world, to allow them to seize whatever opportunities may come along.

We don't generally imagine we will outlive them; that one day we will hold them too silent and still, and make unthinkable decisions about the very last services we can offer them.

Some of us have children with disabilities, with complex medical needs, with uncertain lives. And then we do have to think the unthinkable, and for some of us there's an element of comfort in thinking through some of the worst things that might happen; not comfort in thinking bout them, but comfort in knowing or at least thinking we know what decisions we might make about certain things towards the end of life.

And Beautiful Butterfly B did have profound disabilities. But she was healthy, not frail, and her death was not expected, not anticipated. There was no lengthy illness, no gradual decline, none of the warning signs we may have seen in our children or in others, preparing the way for us. She was just here. And then she wasn't.

And in a few short days - although I'm sure they will have seemed unbearably long at times - B's family created a beautiful, beautiful service of thanksgiving. A service which managed to capture the grief and loss, the shock and the pain we all feel. Which poured out the love B had always inspired, into her casket and back out to the congregation. And which was able to celebrate, truly celebrate, the new body B now has, the wholeness and perfection she has in her new room in our Father's house, and the joy that she has her new Dancing Partner, our Lord Jesus Christ.

And so we mourned our loss, and especially her family's loss. But we also celebrated her Homecoming; and as Mog heard this song her happiness and excitement spread in a wide face-splitting smile. And so we danced, Mog and I, in anticipation of that beautiful day to come, when we will all dance together, with the true Lord of the Dance leading us on.

Sunday, 11 November 2012

Miss Malaysia 2012

In my youf days, I travelled a bit. Scout Jamboree in Korea, hospitality in Japan, a year in California with my family, countless camping trips to France, and then just before I started fostering, three weeks backpacking around India, again with family. occasional forays into Other bits of Europe scarcely counting as travel. It was a good childhood.

I'm not as brave as Mum and Dad. Three weeks under canvas, moving every two to three days just isn't for me. And I can't see myself taking the girls to any far flung corner of the world. True, we've done Florida a few times, but I'm reasonably confident that the health system there would handle anything the girls might throw at it. So we stay mostly within the confines of Europe, knowing that an EHIC and a spot of open wallet surgery will get us out of most emergencies in more or less one piece.

Mum and Dad meanwhile continue to shrink the globe, visiting family and ex- post grad students and old friends, attending conferences, weddings and whatever else comes their way. And continue to build up our international dress stores; forever useful for Baden Powell evenings and overdue homework.

Except I've now spotted the flaw in the plan.

It's relatively easy to drape a Sari around an immobile child, safety pin it to the wheelchair, and not have to worry too much about the actual fit. But when your more mobile child needs an international outfit for the end of World Week, and it needs to hold together when swapping wheelchairs, and for self propelling as well as steering the tank, you can't really staple the Kimono in place. And the Han Bok hangs off, and the shalwar kameez looks like a sleeping bag.

Time to simplify. Happily, there is one style of dress which adjusts for all heights and widths. Enter Miss Malaysia!


Ps - the Scots have their Kilts and the Welsh their lovely bonnetty things - what do we English have?


We took tLP's powerchair to Florida. And I'm forever thankful that we did. Freedom and independence, and the ability to help rather than hinder (doorway hovering aside). How much better to be able to push a wheeled suitcase yourself rather than having to be pushed alongside the suitcases? We would have struggled without her assistance.

And when the choices are powered chair, standard issue NHS manual chair, or buggy, the powered chair suggest a child who is in control, able to make their own decisions, and who is used to wheeled mobility.

The NHS chair seems to suggest child with a broken leg, child with a temporary disability. And for tLP, it suggests child incapable of doing anything for herself, who should have everything brought to her rather than making the effort to propel herself. I'll ignore the super whizzy manual option, because we don't currently have one which does everything she needs it to do properly.

Put tLP in a buggy and she pulls her sleeve over her hand, sucks her thumb through it, and reverts to babyhood. And the general public ignore her size and see an overlarge toddler, occasionally suggesting she is lazy and should get up and walk.

Happily, with functional arms, decent vision, and a reasonably symmetrical(ish) body, lots of options are available to her, and she and we can choose according to the needs of the moment or the day.

Being a little afraid of personal liability issues, we went for the smaller slightly lighterweight chair rather than the tank; a good decision as space might otherwise have been a little tight in both taxi and hotel rooms. And the inevitable foot-squashing is only very painful, not land-you-in-hospital-and-limp-for-weeks painful. But still, she had her little yellow zippy thing, and we had a happy girl.

We have fewer choices for Mog. Whilst I know there are technologies out there that would enable her to drive a powered chair, even with minimal vision and maximal seizures, it's not something we've pursued since she outgrew her BIME buggy. Her energy is limited; she tends to doze as we push her around and then wake up when we stop moving, to check whether what's happening is interesting or not.

So we have supportive, comfortable, wheelchair, slightly outgrown (new one hopefully coming next week!). Infinitely repositionable buggy. Or three wheeler. Not expecting much snow in Florida, we went for the wheelchair option. It's a biggish beast for a not-that-big-really girl. She's ten, she wears clothes a couple of sizes larger, mainly to accommodate stiff limbs and extra padding. The chair though is just ever so slightly too wide to fit through standard doorways with ease, once her switch has been added. And it's long and tall and deep, and if she's cold then she needs a full-sized blanket (or three) to snuggle in.

One small child in small yellow wheelchair; it's too small for her really but we'll hang onto it as a back up for as long as we can. And one leggy girl in long black wheelchair; no longer a feed pump but with communication switch and various bits of kit hanging off every possible hanging point.

People respond to tLP. She's a very chatty person; she likes to know the ins and outs of everything, and assumes everyone wants to know all about whatever it is we might have been doing. We're working on a filter. It hasn't worked yet. And people are drawn to small child zipping along in a chair which at first glance looks like a junior mobility scooter, until she demonstrates the rise and fall and extreme maneuverability. Mostly, they smile, make a positive comment (or one they think is positive), and then get to listen as she pours out whatever's currently on her mind. She's very keen to include Mog in all this, will draw people over to her sister, make sure they know Mog's on holiday too, talk about how unfair it is that Mog got to go on Thunder Mountain and she had to watch; we try to get her not to tell people all about Mog's latest poo, but, as I said, no filter and a big assumption that everyone things things are as interesting as she does.

Still, I wasn't quite prepared for the comment from the lady behind the desk. A nice chat; tLP demonstrating the chair's finer points. "And how old are you, honey?" "Seven." "And how old is your baby?"

Rewind... Yes, Mog's sleeping, she's reclined in her chair, and she's all snuggled up because the air conditioning makes her feel all cold. But side by side, how can you really think Mog's the younger of the two, let alone a baby?


Saturday, 10 November 2012


Awesome as my neighbours' fireworks undoubtedly are; I'm not sure the pocket handkerchief garden is quite suitable for the scale of them. Quite scary actually; I'm sure I keep hearing a fire extinguisher being aimed at the tree.


Thursday, 8 November 2012

I'll be back

To blogging something with actual content at some point. Meanwhile, please enjoy another couple of Florida pics, taken by our wonderful and sadly temporary House Elf Mary.


Wednesday, 7 November 2012

Just for Today

Just for today, I am not OK
Autumn's beauty empty to me;
The sun, aching bright, so cold.

All around me lost and lonely
Leaves fall, no last blaze of glory, 
But tattered, decayed confetti.

Just for today, I am not OK
I crack with the puddled ice.
Knife sharp air cuts at my face.
There is no comfort here. 

Just for today, I am not OK
I will allow myself to feel
The weight of ages crushes and I fall.

I am not OK. 

And tomorrow I shall pick myself back up
put melancholy in its little box.
Put down the memories and find my thankfulness.

Monday, 5 November 2012

All-American Girl!

Minnie Mouse watch, T-shirt and water bottle. New top and trousers. And very very best of all, trainers which light up when she kicks.

Oh - and went to bed at 6.30 UK time, woke up 16 hours later at about our normal US getting up time last week.

And now to buy sausages because she's not that American and wants some home comforts!

Saturday, 3 November 2012

Blended Diet Adventures. Fun with Real Food.

We're a sociable bunch here. We eat out a lot, especially on holiday.

For years, this has meant that we've booked tables with "there will be four (or eight or ten) of us, two in wheelchairs, and she doesn't eat." Miss Mog has very happily either dozed as the rest of us eat, or stuck her tongue out for tiny tastes of whatever smells best at the table.

Since moving away from formula onto blended table food, this has changed a little. Instead of "and she doesn't eat," we've bought her a meal and brought it home to blend for later, whilst bringing out her preblended meal and asking for some hot water to warm it through. Nice, inclusion at mealtimes, the chance to choose from the menu with the rest of us, and eating at the same time as the rest of us.

Today though, for the very first time, Mog got to do what her little sister has been doing for years now, and what most of us take for granted whenever we eat out. She chose a meal, and ate it there and then with the rest of us.

We brought the blender with us, but the restaurant chose to use their own. There was no hint of surprise on the waitress' face, and the only only questions were what did we want it blending with (answer: the cranberry juice she'd ordered), and did we want it served in a bowl (yes please).

And Mog loved it. Food at the same time as everyone else, from the same menu as everyone else, and served by the same waitress as everyone else. And instead of Mog having a taste from everyone else's plate, we all had a taste from hers as it looked so good.

And that's what a blended diet is all about really. Real Food at the right time, the same as everyone else.

And for those interested, Denny's Spinach with Pico de Gallo and Bacon, with Cheddar Mash, blends down beautifully and would make a soup fit for anyone.

A lovely new first for the end of the holiday - and Mog, I'm sorry it took until the last night for us to think of asking. Next time...

Friday, 2 November 2012

Blurry but good

We had lunch with Pooh today. And ROSY friends; not that kind of poo...

It's a bit of a tradition for us. When we came out here with Goldie, a little while before her 18th Birthday, we knew we'd have to get her to meet Winnie The Pooh and friends. One of her favourite stories - but only if read by Grandma - was about the big plot to unbounce Tigger. Tigger Bounced, and Goldie laughed.

But we knew Goldie wouldn't be interested in queueing in the heat for a quick cuddle; much better to fill her full of food and hope she'd be relaxed enough to enjoy meeting the Real Thing.

We went on the Winnie The Pooh ride, where she had extra opportunity to prepare by getting stuck in front of an extra bouncy Tigger for half an hour or so during essential maintenance works.

And then we went to eat. Yummy food, and lots of it, and Goldie was ready to face anything.

And then it happened, and someone managed to catch it on the camera. Goldie saw Piglet. And Piglet saw Goldie. But what makes this most favourite photo of mine so special us that it's not just Goldie smiling at Piglet. She isn't looking at him at all, actually. She's looking over at me, grabbing my shoulder, pulling me over to share her joy at seeing Piglet.

And that was a huge, huge step for Goldie. She wasn't just enjoying this, she wanted me to share her joy. Lovely.

And when everything bad happened just a few short months later, we were all even more glad that we had managed to bring Goldie over here, and that she had so clearly enjoyed it.

Fast forwards six years, and two small and not-so-small girls have enjoyed it just as much. Mog was dozing, as she often does when the rest of us eat, until she caught sight of Winnie coming towards our table. Giggles and glee and general happy happy joy joy.

Utter bliss as he came towards her - never mind the other children (and adults) at the table; Mog's face showed a dream come true. She tells me Yes she likes Winnie the Pooh, Yes she likes the others too and Yes she likes their stories. I didn't know that - I should have done; yesterday she decided she wanted Winnie the Pooh badges to decorate her new chair, and we now have all except Piglet. I spot a theme coming on; might make for some different Christmas presents this year.

I'm not sure we'll ever get back here. The girls are getting bigger; Mog's getting twistier and tLP is about to be rodded and straightened, and I don't think either of them will enjoy the flight very much.

This was supposed to be our last big holiday - uncertain health meant our travel insurance just for the week cost more than a thousand pounds. Add in flights etc., and we certainly won't be coming back any time soon.

And yet - that smile, that joy - how can we not try to make that happen again at some point?

We shall see.
A good day though; memories of Goldie linking with memories of other friends, not friends I'd associate with Disney necessarily, but on our minds today. And an army of too-soon-absent children very present with us as we watched parades and rode boats through a Small World, and wished this world a little smaller just now as the distances are definitely too far apart.


Thursday, 1 November 2012


A gentler kind of a day today. England feels a long way away when friends have had the worst kind of a day and we can't be there, not to comfort necessarily but just to be there.

But small children need entertaining no matter what, and I'm sure our friends wouldn't have wanted us to stop everything. So, Epcot.

Clam rides with Nemo and boat rides to hydroponics factories and a quick trek around the world including arguments with trolls.

A lost child; tLP ran off, and you'd think she'd be easy to spot but she wasn't. I think she scared herself nearly as much as she scared me though.

Pizza for tea and a bottle of wine and toasts to absent friends, never out of our thoughts even as the warm balmy sun eased stiff muscles. The kind of day when you can feel the vitamin D seeping in through the skin, and when fresh Florida oranges (thank you, Alesha and Doug) drip vitamin C Togo with it and health and vitality jars with the news from home.

Tomorrow, back to the Magic Kingdom, and tonight, sleep. And thoughts and prayers with our friend's - I thank God that 4,000 miles is nothing to Him, and He can hear our prayers from here whilst being with our friends there. Or, as tLP put it "I think my Daddy God is very busy at work today"



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