Make A Wish

Once upon a time, there was a girl. A very girly girl, who loved dressing up, shopping, having her hair made glamorous, and having her nails made beautiful. This girl had a wish. She wished she could be made extra smart and wonderful, she wished she could go and be the most important girl in the shop, find the most beautiful dress, and have a haircut to go with it. She wished she could go to the theatre, all glammed up, and see a wonderful show, and not be told to shush when she sang along. 

This girl told her wish to anyone who would ask. And for a couple of years, her mother promised that one day, she would fill in the forms, and see if the magical people at Make A Wish would make it happen for her. And the girl would roll her eyes, and friends would laugh, because they knew how long Miss Mog had been asking for this.

And then the girl started getting a little bit poorlier, and wasn't managing school very well, and the house was getting fuller and fuller of nurses and carers, and the mother decided it was probably time to get on with the paperwork. That's the back story.

So it turns out, the paperwork is actually pretty minimal. I filled in a single page form, sent it off, and two days later, Make A Wish contacted the hospice to check we were who we said we were. They sent out a slightly longer form, I filled that in too, and then they sent out a pack for Miss Mog, with the request that she choose not one but four separate wishes. 

Now there's a thing. It takes a while for a non-verbal child to express four of her deepest desires. We read the newspaper which came with the wish pack, to see if any of the recently granted wishes might take her fancy. We thought about the various categories of wishes. Something to do, something to own, somewhere to go, something to experience. We thought about things she likes, things she might like, things she really wouldn't ever like. And eventually we came up with four wishes for Mog. 

Number one wish, to have her haircut and makeover, get dressed up all fancy, and go out to a show with her umber one knight. 

Number two wish, to have a nice warm pool she could relax in now she doesn't fit the bathtub any more. 

Number three wish, to be able to make music all by herself. 

Number four wish, to go back and say hello to Winnie The Pooh again.

OK, four nice wishes, and a girl happy with all four of them. We put them down on our cheat sheet for the Make A Wish volunteers, and waited for their visit. 

Mog was a bit busy demonstrating why she qualifies for a wish when they got here at tea time on a Friday. But she managed to agree that all four wishes were in fact her own wishes and not ours. Squeezing time away from tLP, who had her own very clear ideas for her own wish, she had made a decision and told the room all about it. 

And much to my surprise, Miss Mog decided against the haircut and makeover, against the time with her number one boy, and instead decided that as it's a bit tricky for her to use her voice consistently at the moment (although fellow church goers might be surprised to hear that), she actually wanted the means to make her own music.

And then we waited. Not very long; whilst we were on holiday, we had a series of phone calls from a very nice Wish Granter, who confirmed Mog's wish, queried tLP's, and said he was arranging delivery for the following week. 

And on Thursday, in the fifteen minutes I left the house to rescue Mog and nurses from school overload, the postman dropped a slip through the door. Mog was not impressed. We waited the requisite two hours, then nipped up to the post office, where a rather special parcel awaited us.

 It didn't quite look big enough to be a whole wish, but the contents were pretty exciting anyway.

Badges, lapel pins, £30 to spend on a celebratory meal, and a letter explaining that over the next few days, the post man would be delivering something very exciting. 

And so we waited. Friday, nothing. Saturday, nothing. Sunday, not a post day anyway. And on Monday, Mog dressed up in her finest, stayed home from school, ordered her nurses to redo her nails and make her hair beautiful, and waited for her wonderful wish. 

And waited. 

And waited. 

On Tuesday, I phoned up, and it was explained that Monday 11th was merely the first day of the week in which her wish would be granted, not in fact the day it would come true. 

And on Friday, this happened.

It's not the best video, because the best ones are both too long to be uploaded here. But you get the drift. She loves it. She's been singing away with it for the last hour. Feet hitting switches to find a bass riff, one hand to play the tune and the other to hit some harmonies. It's beautiful.

And tLP's wish? 

Wait and see!

Tia

Because they're growing up too fast

tLP brought a doll to church today, a doll which was appropriated by the very delicious little boy sitting next to us, who spent the service delicately identifying the doll's various facial parts, and very sweetly playing "Round and round the garden" with the doll's hand (and then giving his mother heart failure by body-surfing the doll, which, under small child, looked far too similar to the very real baby who had been on that spot on the carpet a few minutes earlier).

tLP abandoned the doll in her quest to run around outside with church friends, so doll hitched a lift out of church and into the hall on the back of Mog's chair. To quote our esteemed service leader this morning "Tea and coffee are good, but worshipping God is better." I wonder if the worship might be better if the coffee came first? I guess the queues for the loos might be longer...

I digress.

Mog and I entered the hall, I picked up my coffee, and turned around to someone nodding at Mog and the doll perched behind her, passing comment that "You've got two babies today I see." Confused, I pointed out Mog was 11, hardly a baby, and we had a conversation, somewhat startled on his part, as he hadn't realised she was the same age as his son. Don't think he quite understood that she wasn't simply an 11 year old baby though.

She isn't. Even when she's asleep, peacefully and beautifully asleep (bar the sarcastic seizures which twitch to order whenever anyone points out how peaceful she is), she's very definitely not a baby any more.

And nor is her sister

I might still have thought of them as babies for a while

   

Because let's face it, that's adorably babylike.

And this is just silly.

But whilst she might still enjoy cuddles on my lap, and whilst she might still need certain care not dissimilar to that I might give to a baby, I know of no baby who can be as insultingly sarcastic as Miss Mog, without ever having to utter a word aloud.

Here's to the next eleven years!
Tia

Eye of the storm

Faith's a funny thing. Faith let me treat Mog's big seizure last week, then leave her at school to go swimming. And then enabled me to leave her at the hospice for a long weekend, as I went off for a weekend a couple of hours away. That couple of hours is significant - thirty minutes is my comfort zone, my ability to get back to her bedside to give her the second dose of emergency medication, my chance to be with her before it's all too late. Helen House is the only place I can leave her when I'm more than thirty minutes away, and even then I rarely do.

Logically, I know that Mog is just as safe in God's hands whether I'm sitting right beside her or on an island with a lengthy walk and then a ferry and then a too long drive home to get to her. But whilst my head says "God's in charge", my heart says "My beloved child; what if she needs me?"

Which makes Sunday all the more precious.

Saturday was a beautiful day. It was a day with 1477 other women (and a few brave men in the band!), an appointment with God which we'd booked up in the middle of a different storm, in January. Make a date with God and He tends to show up. And there was worship, and there were tears, and there was teaching, and because it was my friend and I, there was a certain amount of inappropriate laughing too. But God made us, and God gave us both a shared sense of humour, and I think He might have been laughing too.

A message delivered so fast that I'm finding different sentences floating up now; sentences I'd somehow filed away to think about later whilst trying to keep up with the next thing Christy Whimber was saying. And a message I didn't entirely agree with, but like an apple; plenty of sweetness, a hint of sharpness, lots to chew on, and some pips to be spat out.

And a beautiful sunny afternoon, a walk along the rocks, and as bonus light relief from some of the heaviness of the day, a big black lab bouncing along the waves, exuberantly retrieving the most revolting tennis ball ever from the black salty water.

And then another lovely meal at our hotel, and then tears and honesty and openness and a ridiculously late night (Sorry my friend!), followed by a good night's sleep.

Sunday was supposed to be cloudy and cold and somewhat grotty; we had gone to bed knowing that we'd had the best of the weekend on Saturday. But instead we woke to streams of sunshine forcing their way through the gaps in the curtains; a perfect day for our trip to the island.

And not once did I stop to think about how far away from Mog I'd be. After a wobble on Saturday night, I woke up without any of the "what-if she needs me"s on Sunday. Just knowing she was safe in God's hands, and in the hands of the hospice staff, and not even thinking very much about either girl, except to be thankful for them.

And the day was a gift. I think God likes to give us things, and on Sunday He just kept on giving. We had a slow start, but still managed to catch the first ferry of the morning. And the sun blazed down on us, and the water danced, and we landed on beautiful Brownsea Island. We walked through Scouting history, and we were surrounded by outstanding beauty, and the sun shone down on us. The ground was soft beneath our feet; moss carpets and bouncy clay; the ultimate in easy walking. I had forgotten how good it is to walk without either pushing a heavy chair or carrying a heavy backpack. And my friend carried our water and money, so I had nothing but my coat to hold me down.

It was a day for singing, a day for tree climbing, a day for dipping toes into icy cold water. A day for discovering that my friend's geocaching habit can actually be quite fun (Yes - I apologise to all of you for being rude about it in the past). A day for nearly being savaged by an angry peacock, a real "Taste and see that the Lord is good" kind of a day. A red squirrel. Birds. Scouts camping where Baden Powell held the first ever Scout camp. Bell ringers in a tiny church. Pink trees, blue skies, steep paths climbed gently. Laughing and smiling and talking and standing together in silence.

Finally time to start thinking about coming home. And so we meandered down to the ferries again, and, the icing on the cake, our own private upper deck (OK - the wind was up and no one else was silly enough to want to freeze) and so our own private tour around the other islands in the harbour. Sitting freezing feeling the force of the wind, and realising that what we'd expected to be the first step towards home was in fact the icing on the cake, an extra portion running over. God is good.

A clear run home, and a slow walk back to normality. The chance to get to an evening service (happens once or twice a decade), a peaceful night, and then a different kind of busy day on Monday.

And then back to reality with a bump and a bang and a whole lot of twitching. A Mog with a long long seizure - record long for her - and a Mog struggling either with whatever new breathing thing caused the seizure in the first place, or with whatever breathing thing the huge dose of diazepam has left her with. Hopefully temporarily. But a night full of alarms and beeps, and now a morning where she has woken up as I write this, but is unable to cope without her CPAP.

A morning where I'm back to "Help me, God, I don't know if I can do this", and a morning where the reality of the possibility of losing her (not immediately - I assure you I wouldn't be blogging if that were the case!) feels far too close. The sea is so wide and my boat is so small, protect me O Lord.

Is my faith any less than it was when I left here on Friday? No. Am I scared? Yes. But Sunday is a precious jewel of a memory, a bright shining reminder of how much God loves me, and how He is so much more immeasurably immensely everything than I can ever possibly begin to imagine. And tears and worship come hand in hand. This weekend we stepped briefly into the eye of the storm, and there was peace and beauty and perfection - and we were sheltered from the winds of life around us. And now I've stepped back into the storm again, and I'm breathless. Breathe on me.

Jesus, be the centre.
Tia

Mary

As tLP went back to school and prepared herself for the Big Event yesterday, Miss Mog had her own excitement. A reprisal of an earlier role, but then she does look rather dashing in blue, I think.

 

She was in respite the night before, and much consultation had happened between the various authorities as to the necessity of having her in school by 9.30 rather than her usual 10AM. Despite this, her transport did not turn up at respite until 9.26. The show started at 10 as planned, and those of us aware of her absence scanned the programme anxiously, willing other classes to move slowly, hoping the comperes would drop notes and slow things down.

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

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

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

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

Tia

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.

Tia

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!

Tia

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.

Perception.

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?

Tia

Zzzz

Is it bedtime yet?

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...
Tia

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.

Tia

Epcot

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"

Tia

Happy day highs

Mog's definitely back on form.

New clothes today, quite a bit of shopping actually. She turned down the chance to shop with our nearly 17 year old friend, opting instead to stick with me - giggling because she thought I had more money. She laughed as tLP puked her lunch (lots of choking these past 2 days, not quite sure why), she grinned as she kicked everyone under the table tonight, and howled with laughter when she managed to insult our friends. It's amazing how rude a non-verbal child can be when she tries!

No painkillers, no anti spasms, no extra meds at all, just lots of happiness and generally seizing the chance to have a really Good Day.

Epcot tomorrow
Tia

We Ride the I-ride

I can't say how nice it is to be able to turn up without any kind of appointment or prearrangement, to know that within the next twenty minutes a bus will turn up, and that it will have space for two girls and their wheelchairs.

To know that the driver will have no hesitation in getting people to shift down the bus out of the wheelchair spots, and that there will be not just space, but four point tie downs, on each and every bus, is impressive.

Add in the fact children travel for free, adults travel for not a lot, and no one else on the bus huffs and puffs about the time it takes to clamp the girls in, and you have a transportation system which really works. Provided you ignore the fact that some of the drivers don't know how to operate the lift, that is. Thankfully, their radio link person seems to have clear instructions, and on the one occasion the lift wouldn't cooperate at all, the supervisor turned up in an empty bus within minutes, and beat it back into submission.

We like. It makes it possible not to drive, it means we don't need taxis everywhere we go; we can in fact be tourists just like everyone else.

Of course, when the ahem charming child behind me decides to use my admittedly well padded rear end as a foot rest, I think the taxi option might not be such a bad option after all...

Tia

Sea World.

One of our most favouritest places in the whole wide world.

One super happy Mog, singing away for all the shows.

One slightly terrified Little Princess, very disconcerted by a 3-D movie shot from the perspective of a baby sea turtle.

One awfully big adventure, when the lift on the I-Ride trolley broke and it looked like both girls would have to stay on board forever. Until the supervisor came and did the magic turn it off and on again manoeuvre;at which point tLP led the bus in around of cheers and applause.

A properly Good Day.
Tia

Disney

Much fun in the Magic Kingdom. Mostly. Mog sadly was very uncomfortable most of the day, but stopped crying long enough to enjoy Thunder Mountain, Pirates on the Caribbean, and a twirl on the Teacups.

The Little Princess enjoyed the lot, and I'm hoping to steal our friends' photos of her and the other smalls waiting for the parade.

Lots of fun, minimal whinging (Mog aside), and a gentle baking sun. Lovely. Tomorrow we are off to Seaworld, where I hope the manatees and dolphins might help put her into a better mood.

Tia

Longer Letter Later

Or earlier. Or at some point.

We got to the hotel. It was a leetle cramped, but fine. Our taxi arrived in plenty of time, we had fantastic assistance at Gatwick, the flight was a little delayed but fine, and the wheelchairs survived the flight.

We had great help again at Orlando, found our friends who seemed to be as pleased to see us as we were to see them, have a nice hotel and have just had a meal at Denny's.

And now it's either 9.30 or 2.30, depending whose clock we're following. But either way, the walls are swaying and it's bedtime. Least stressful flight ever and both girls have coped outstandingly! And I'll probably find something more interesting to say tomorrow, but for now, goodnight.
Tia

Getting Ready

On today's to-do list

1. Shower girls, prune and trim and generally make tidy before school.
2. Breakfasts and meds and everything else we normally need to do.
3. Finish packing.
4. Cats to cattery.
5. Washing.
6. Washing up.
7. Update girls' medical information books and pack them too.
8. Load bus.
9. Empty bins.
10. Talk to neighbours.
11. Deal with overflow of fruit and veg.
12. double check passports, tickets, etc.

Make luggage labels and write them.

check everything cancelled which needs to be cancelled.

Leave notes for them wot needs notes.

Not on today's to-do list

1. Nip into school and shave my daughter.

 And here would follow a thoughtful post about children growing up, except that this was needed in order to tape her arms to help her muscle tone, rather than any teen girl crisis. And I'd still be inclined to muse about how this wasn't how I'd envisaged buying her her own razor (if I had ever planned these things), but the school bus has just turned up, and so I must unload girls from there and load them onto our own. Let the holidays begin!

Tia

Insert suitably witty title here when less tired.

I had a certain feeling about today when it started, not in a peaceful and gentle realisation that the night was over and the morning was here, nor yet in the summons from a needy child, but by the insistent sound of one (possibly two) cats sharpening their claws on my headboard; a technique they have perfected in recent days and one guaranteed to have me sitting up before I've opened my eyes.

Miss Mog is now halfway through a course of flucloxacillin, following on immediately from a week of amoxycillin, which follows swiftly on from a batch of co-amoxiclav, all of which is being washed down by her regular azithromycin. I think she may be sterile. Certainly, there's no hint of green anywhere near her copious secretions, the large pink throbbing circle surrounding her gastrostomy has shrunk significantly and is showing signs of returning to normal. Her bowels are possibly the sprightliest they've been in a good long while, and any vaguely hormonal spots appear to have packed up and headed south for the winter.

Two days dairy free have done a lot to improve her antibiotic discomfort though; so it was a shock to discover her silently screaming under her mask this morning. A scream which became significantly less silent when we removed the mask, but resolved itself fairly soon. She wasn't interested in explaining, so I settled for being happy that it wasn't an issue any more.

Meanwhile the Little Princess woke up in an "I"m not going to church so you can't either, HAH" mood. Resisting the urge to retort with "Well I'm going and you're too young to stay home alone so you have to come with me HAH DOUBLE HAH" (although I'll admit the temptation was almost overwhelming), I settled for a reasonably rational "Never mind, I'm sure you'll enjoy it when we get there." I do occasionally get to play the adult. It's rare enough that I feel I should record it when it happens.

Not the most auspicious starts to the day though. I did however manage a very nice warm shower all by myself and reasonably early on, meaning that I was for once fully dressed and very nearly polished (or as polished as I get) before our carer turned up. Shame about the kitchen, but then the cats had had great fun with the two-years-out-of-date coley fillets I'd found and ejected from the back of the freezer last night. At least they weren't totally wasted; the cats really had had quite a lot of fun punting them around the floor most of the night.

Still, clean clothes, clean hair, straight parting; it doesn't come much better than that around here. A shame then, that an explosive bowel incident (not my own!) coated not just three walls of the bathroom but also hit rather closer to home.

OK, cleaned up, two girls somehow dressed and polished, neither coughing or showing any signs of illness - bowels being more disability related than anything new and interesting. One ham sandwich cut into heart shapes (how did this get started), one tasty home-made-almond-milk* based smoothie smushed rather more hastily than usual, one carer harried out of the house, and we were in fact off to church in decent time. Albeit with a reasonably large trail of devastation ranging throughout the house.

To church then, and Miss Mog opted to stay with the adults rather than heading for the mayhem Godzone children's stuff. And behaved very nicely, and enjoyed the worship, and I don't think people objected too strongly to her delayed joining in. She voiced her enthusiasm for the sermon quite thoroughly, and then decided to drown nicely towards the end, forcing us to leave to calm things down a little and to enable the rest of the congregation to hear at least some of what was being said.

Little Miss Innocent all through coffee; "Who me? I wouldn't make a sound", and then home where a nicely bland and dairy free chicken casserole was waiting to be blended for Mog and flavoured up a little for the rest of us. An equally bland and kind on the stomach fish pie also blended, music CDs burnt for staff who can't work an iPod, a bag packed, (and if it takes me three hours per bag for Florida then I should have started last week, oops) and equipment gathered together for a trip to respite, and we were just about out of the door after a reasonably hurried lunch.

Into the bus, and once again Mog demonstrated why exactly we really need our new bus with her spot up at the front next to me. It's never good to be driving down the dual carriage way, to hear  large cough and silence, and to have a small child say "Mummy, Mog's upside down in her chair." Coughing her way off the seat and down the side of the chair is really not a great new talent. And a three point harness doesn't stop it - roll on new chair as well as new bus. Now please. 

Back to Mog's second home - we missed a few nights for various reasons, so she's had extra respite this month; I miss her but two lie-ins a week has been really rather lovely. A quick run-through all her new meds and protocols (you wouldn't believe what's changed just since Thursday), a check of email address to email a copy of her talking book, as our very nice printed one seems to have gone AWOL - rewards may be offered for its swift return - a discussion about feeding and everything else under the sun and finally tLP and I were back in the bus and ready for home.

Detouring past various petrol stations in the vain hope one of them might have diesel at a cost not requiring a second mortgage (for my US readers; the cheapest I can find is $10.40/gallon), successfully avoiding McDonalds, tLP and I arrived home with only a camping saucepan full of wee (she's developing an obsession with self cathing in the car; I'm all for independence but I think she's taking it a little far) to commemorate our trip.

A request was made for chocolate Brownies. Not wishing to sabotage my last ditch plans for a week of healthy eating before we hit Florida (with all its Funnel Cakes and Blueberry Bagels and other yummy stuffs), I was rather pleased to find a recipe for just two Brownies. Found one which claims to make just one 95calorie Brownie too, but oh dear, I had no yoghurt, and so had to go for the double version instead. We mixed, we poured, we licked the bowl and baked the Brownie. We actually had a whole five minutes without any kind of frustration on either side. It was good. Chocolate is good.

And then we returned to the battle of wills over drinking, over how we don't throw things on the floor because then we run over them and they break, how we don't ever EVER pour water over iPads and computer keyboards, and how STOP means cease and desist immediately, not just when it happens to suit you, and how spitting is Never Allowed, and how bedtime really is going to be very soon and how tiredness is Not An Excuse, and on and on until I was tired of the sound of my own voice and certainly tired of the sound of "well I'm sorry, but...", and thankfully the Brownie was baked, or nearly, and so we split it in two and poured it out onto plates, and nibbled together. Food, the great healer. And we had switched the cocoa with drinking chocolate, since cocoa had we none, and tLP the gourmet tasted hers and declared it officially too sweet to be a proper Brownie (and she was right). I have great hopes for her cooking ability.

Our evening carer appeared and persuaded tLP into a bath. And tLP shouted long and loud about the wrong way to wash her hair, and the wrong way to wash her bowel and spoon, and the wrong way to be hoisted, and the wrong order to get into bed, and I considered trying on her ear muffs but settled for a baked potato and some pumpkin and cashew nut soup, and decided I'm unlikely to lose 2 stone in the next three days, so I may as well enjoy eating all the good things we have around us. And there are many such good things all around us at the moment.

And still she shouted on, and meanwhile I attempted to email respite a copy of Mog's talking book. And one hour after I first began the attempt, I think the sixth version of the email address has finally gone through without, so far, being rejected. A missing r, a missing ., a rogue k, a missing r and a rogue btconnect; a frozen mail server, a forced computer shutdown, and finally I think I have just about managed to send three attachments to the same place, where I hope they will be able to assemble them in something vaguely approaching the correct order, and Mog will have a voice again. And then of course the pink file will turn up again. Or at least it had better.

Meanwhile, tLP, wrestled into bed, suddenly morphed into the most charming and caring child on the planet. And begged please for a nice Bible Story and now won't you ask me questions about it to help me understand it and now I just want to check these little bits and HEY NO I'm not tired at all (but oh boy, I am!). And so we Snuggledy-Buggeldy-Ruggedly'd her up tight with Tummy Pig and Special Blanket, and she asked me very politely to close the bedroom door, and I did, and there was silence.

Until suddenly there wasn't, because Stealth Cat had decided to disguise herself as a pair of school trousers and so had been left behind in the bedroom, ready to leap at the first sign of a sleeping child.

Cat extracted, we said goodnight again as Mummy and daughter, and as friends, and if not letting the sun go down on your anger isn't quite as good as not letting yourself get that angry in the first place, it does I think come a close second.

And now she's asleep and the cats are asleep, and the kitchen no longer reeks of fish, but I've just remembered the load of ashing which has now been in the machine for 36 hours, so I had better go and extract it on the way to my own superbly comfy bed.

Tia

*brag alert

More on Mog

"Give it a few days, then start stretching her for several hours every day" read the discharge instructions.

Great, except that holding an arm into a position it doesn't want to be in is easier said than done. And whilst strapping an arm into clothing or chest straps will keep it from flipping up around the shoulder, it won't help to splint a wrist.

Enter a Picture Puffin and a couple of scarves.

I think she approves; I just hope the physio does too!
Tia