Happy Christmas

Christmas Cheer

Miss Mog's busy getting ready for Christmas. I'm tempted to take the kit in for the next carol service, but I'm not sure the rest of us could keep up!

She's modeling the latest line in face furniture; her CPAP mask. She's a little overfond of it at the moment; we're hoping that having her tonsils out will help, but that can't happen until the hospital is less full of children with bronchiolitis.

After three cancelled op dates, we're now shelving thoughts of surgery until after Christmas. This means we can go ahead and get on with living life between now and surgery, including of course a rather lovely holiday with friends, rather than hiding away at home to avoid catching anything nasty. Prospective visitors with lurgies need not apply...

Which means, we're getting out and about more often with Mog's CPAP in situ.

Which means, we're using the battery more frequently.

Which means, when the battery has started to be a little dodgy, that's a problem. Happily one with a temporary fix thanks to a loaner machine from the sleep clinic.

It also means, there's a bit of a problem when your sister runs over the special cable which allows your CPAP to plug into the battery or the cigarette lighter in the car.


And so, yesterday, broken inverter in hand, I phoned ResMed, who make Mog's CPAP machine. And a very lovely lady answered the phone, quoted for a new inverter, and then put me on hold as she'd had an idea. Her idea included a cupboard full of second hand inverters, and she quoted me a much cheaper price for that.

Noting our address, she even gave me the choice of driving to their office to pick one up last night, rather than waiting for a slower than average Christmas post.

I couldn't manage that, as Mog was already in bed, but this morning I swung by their (very fabulous) office, and the receptionist tracked down the woman I'd spoken to last night. Who turned up with a shiny working inverter in a lovely blue bag, apologised for the fact it wasn't the original bag, and then told me the office wished us a very Happy Christmas and there would be no charge at all. Hurrah! So thank you ResMed, for making it possible for Mog to keep her own humidified CPAP in the car and out and about. And thank you, ResMed, for making a CPAP machine which is so silent, the only way we can tell it's on is by putting a hand over the exhaust port and checking for a breeze.



It's been a jolly few days altogether. Mog had nurses the other day, so I made the most of it by leaping into town for Christmassy stuff. First stop, the post office. Where I had the joy of watching the post mistress attempt to fasten stamps and a recorded delivery sticker to a well-wrapped golf club. It entertained the whole queue. I'm slightly worried though about the recipients of the next poster. I really hope he warned them about the contents of the parcel. Because if I received a well wrapped parcel with Christmas stamps on it at this time of year, I would not expect the contents to be worming tablets.

I then had the slightly more frustrating experience of trying to explain that Orkney is neither "Inland" nor "Southern Ireland/Eire", but in fact islands off the north coast of Scotland. However, my sister in law informs me the package arrived safely, so clearly the system knew where to go, even if she didn't.


Home the next day, and cooking with Mog. A multisensory experience; definitely educational. I thought I'd have a go at these Pretzel Turtles. Beautiful, not too tricky, and mmmm salty sweet chocolate. Sounds like a winning combination?

Not so much! Tasty, yes, but beautiful little circles to be carefully dropped into previously purchased small glass jars and given as Christmas presents? Maybe not.

OK, so, next plan, my never-fail ginger biscuits. Now these really are lovely (you can see the successes just beneath the pretzel brittle). I'm lazy; I've adapted the recipe from one in a much loved recipe book; I remember the changes I make, so I just start from the book each time. I should really write out the recipe, as it should be. Which would stop me from doing what I achieved this week and last time we made them with the Guides.

Ginger Biscuits

In fact:
1lb plain flour
1 tsp salt
4 tsp baking powder
4 tsp bicarbonate of soda
4 tsp ground ginger
4 tsp ground mixed spice
8 oz butter
6 oz castor sugar
4 heaped tablespoons golden syrup.
extra sugar for coating.

Melt butter and golden syrup in a saucepan.
Meanwhile, sift dry ingredients together in a big bowl. 
Dump in the butter and golden syrup, and stir until blended.

Grab small handfuls of the mixture and eat roll into balls, about the size of a walnut.
Roll each ball in sugar, place on a greased baking tray.
Gently flatten each biscuit with the back of a fork.

Bake in a preheated oven, 180C (350F), for 4-5 minutes until they are just changing colour, have risen slightly and collapsed a bit. Remove from oven, leave on trays for a minute or two then transfer to cooling racks. What you should have is an utterly delicious, chewy, gingery biscuit. It's good. Oh, and it makes about 4 dozen.

So far so simple, right? That's about quadruple the original quantities, but when I make these, they go quickly.

After the pretzel disaster slab, I thought I'd better shape up. And duly measured out quantities, unwrapped a slab of butter and melted it with the syrup, dumped it in on top of the flour, and then realised that 500g butter is in fact 1lb, not 8 oz. Curses! OK, no problem, weigh out another pound of flour, another half a pound of sugar, go back to the cupboard for the ginger and spices. Add ginger, finish the jar, no problem. Add the next packet, dump in quite a lot before sanity started tapping me gently on the shoulder and I realised mixed spice isn't usually dark red. Paprika biscuits anyone? 3lbs of paprika biscuit dough?  Coming after last week's utter failure to build a gingerbread house, I'm now considering officially retiring from the baking arena.


A Thursday not filled with hospital and operations, instead spent quietly spending the remainder of Mog's Birthday money on more Chronicles of Narnia AudioBooks. Nice. And then today, after a happy ResMed Christmas, a day with friends drinking coffee at our favourite local Barns Cafe (I recommend the Mocha with the full works - where else can you get a joint hot chocolate and coffee combo with whipped cream and crushed maltesers?), and then a beautifully peaceful afternoon and evening, tLP having gone to tea with friends, Mog choosing to retire to bed with the Magician's Nephew.

And so to pizza, much pizza, in memory of my precious pizza-eater, who would have been 25 today.

Tia

Dusting off the blog

Cough, cough. Knock knock, hello? Anybody out there? 

It's been a busy few months. 

I wanted pictures, but the perfect photo isn't coming, the imperfect ones are a little indecent, and so you'll have to make do with a word picture instead. 

Five or six years ago now, a certain small girl finally swapped the NG tube she had had since birth for a PEG and then a button. From purées via feeding therapy to solids, and from overnight feeds to drinking more than enough to keep her kidneys working nicely. Via, inevitably, since tLP isn't always terribly princessly, a rather disgusting interlude when oral fluids were banned, a prohibition she circumvented by sipping stomach juices directly from the PEG. Things they don't tell you about when you sign up for these children. 

 Anyway, from purées and tube feeds, via disgusting episodes, to eating and drinking everything necessary, taking medications orally, surviving even after major surgery without really using the tube. Marvellous. 

And so, time to remove the tube? Well, no, tLP decided she wanted to keep her button, "because it's me." Fair enough. But a sore, manly, discharging, revolting stoma held open by an unused gastrostomy button and bleeding all over ever white school top isn't really the ideal thing to need as a part of your self identity. 

Careful propaganda every time we cleaned it. Gentle suggestions from carers and nurses and less sympathetic "it wouldn't BE sore if you didn't have it any more" type comments from yours truly, and suddenly, she decided she was ready for it to come out. 

She told me, I phoned our long suffering community nurse, and she found an almost instant spot in her diary. And before tLP could change her mind, the button was out, the fairly grim hole was dressed, and tLP was officially no longer a gastrostomy user. 

One week later, and the hole is just a slightly purple dimple. Much to our surprise, the mammoth over granulation has not formed a giant wart like mountain  over her stomach. A gentle purple dimple - more of an "innie" than her tummy button - and an even older tiny scar across one nostril are now the only reminders of her 8.5 years as a tube feeder. 

Rather unfortunately, the dimple is a similar size to the scar left in the middle of her forehead from her first ventilator mask. So she now appears to have been shot in the stomach as well as the head. But I guess she can always use that when she gets tired of explaining why she needs the wheelchair. 

Tia

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

Coconut brownies (wheat, dairy and gluten free).

And very delicious. 

Melt 5 oz coconut oil in a saucepan with 6 oz plain chocolate. Set aside to cool slightly. 

Beat three eggs, add 8 oz caster sugar, then add 6 oz gluten free flour (I used Doves farm for laziness, but have also used a mixture of cornflour, gram flour and rice flour quite happily), 1tsp gluten free baking powder, and a tablespoon of cocoa powder. 

Pour in the chocolate and coconut oil. 

At this point, add chopped nuts, raisins, coconut shards or anything else you fancy. I didn't; they didn't need anything extra. 

Stir until all mixed, then pour into a greased and lines baking tray, about 6" by 8" or so. 

Bake in a preheated oven, 180c/gas 4/350f, for 30-35 minutes until a crust is formed and the brownie feels set and not too wiggly. 

Cool and cut into segments. 

Collect praise from friends with food intolerances. 

Tia

How not to do mission.

Select your location with care. About 2/3rds of the way up a narrow steeply sloping footpath is probably ideal. People are bound to need to pause and catch breath, after all. 

Select your targets with equal care. That convoy of three adults with four children in wheelchairs are ideal. They won't mind at all if you jump in front of them as they puff their way up the hill - see point one above, re: needing to pause for breath. 

Pick your moment. If you notice the group has waved you off for a minute, don't be put off. Step in front of them again. Speak loudly in order to be heard over the strangely insistent alarm sounding from the machine attached to one of the children. Don't be put off by the frantic rummaging through medical looking kit, the odd colour of the child with the machines attached, and the slightly stressed look of the adults as they appear to be telling the child to breathe. Who knows, this could be that child's last opportunity to hear the Good News? 

I admire your determination to share the word against all the odds. But here's a thought:  

You saw us. You watched us, you stepped in front of us, making our way harder. Perhaps another time you could come alongside, even offer to help push. Meet us where we are, see to the most pressing need. 

A bit of physical exertion on your part would have given you the opportunity to talk to us far more naturally. And instead of having a little prepared card to read from, you might have been blessed by an actual real conversation. Of course, that conversation would have shown you that half of us were already pretty familiar with the Good News of Christ (and the other half equally secure in their own pre messianic faith), but it might have been an interesting conversation nevertheless. And we'd definitely have been thankful for your help. 

Please, guys, open your eyes. At the risk of sounding a little clichéd, what would Jesus do? I'm pretty sure He wouldn't have been making a difficult situation worse. 

You ran away pretty quickly when we suggested now was possibly not the best time. Thank you for not pressing the point, but again, if you'd looked at the whole situation and not just your memory card, perhaps you might have thought to offer help? We didn't need an ambulance, but offering to call one - or to clear a path through the crowds to a quieter spot - might once again have given you an opportunity to share your news, whilst also giving you the opportunity to serve. Actions speak volumes. 

I'm sure you won't read this, so instead I'll shout out a big thank you to those Street Pastors we know both locally and further afield, who take the opportunity to be Jesus to the people they meet, in order that those people might see Jesus in them. It's probably a bit messier than throwing yourself under a passing wheelchair convoy clutching a little script. But it's almost certainly more effective. 

Tia

The good, the bad, and the ugly.

Apparently in irreversible reverse order. Thanks, blogger. 

Here's the ugly. 

What is it? 

It appeared in our fish tank yesterday. No new plants or other additions for the past 6 weeks. And yet it was suddenly sitting on the log. I'm assuming its been lurking somewhere growing gently, but that still doesn't answer the what is it? 

The bad

From three snails came three hundred. Anyone want some water snails? What do we do with them? 

And the good. 

A long time ago, we relieved friends of twelve guppies from their seriously crowded tank. 

The guppies slowly faded away, aided by the addition of new fish which promptly went belly-up, until we were left with three hardy specimens, all apparently male. 

Last night I noticed one of them was seriously vast, and either badly constipated or deeply pregnant. Making mental notes to dig out the nursery net, I went to bed. 

 And this morning, lots of babies! 

So I'm guessing conditions in the tank are finally sufficient to support growth, which is excellent. But is the alien insect thing going to eat all the fry? 

Tia

More Loving

The postman called again today. A big parcel for the Little Princess this time. 

Patiently, I waited until she got home from school and let her do the opening herself. 

And what can I say? It's beautiful. So much work, so much love. Benjamin approves too! 

Thank you so much to everyone who stitched and quilted and sorted. One very happy girl keen to try it out tonight. Thank you http://www.lovequiltsuk.com. 

Tia

When I'm not blogging.

I'm a little busy. 

Mog's out of school, currently attending for two short days a week. She's a bit better than she has been, but we're waiting for an ENT appointment. 

TLP's in school full time, and has collected friends around her, meaning that our house seems to have become pre-teen central. There's a constant stream of glue and glitter, music and chatter, cake making and sweet munching and sticky orange squash everywhere. 

And when I'm not running Mog places or sorting seizures or meeting friends, I've been a little busy with the sewing machine. Very satisfying. But the weeks have been shrinking. 

Fun at the fair

Ask tLP, and she rode six rollercoasters, ate all the food in all the stores, and won every game there was. 

Further questioning may elicit the admission that riding the snail on the galloping horses merry-go-round might just have been more like it. 

Mog was happy this year to watch and listen, but still enjoyed being a part of it all. 

No goldfish here, but one rather fabulous purple grape-scented bouncing ball. Which bounced beautifully for the rest of the evening, and bounced beautifully all of the next day. It bounced around the sitting room, releasing scent and causing much squealing. 

"Don't take it outside," I said. It went outside. "keep it on the grass," I said, "It will burst if it hits anything else. It's an inside ball really."

Two minutes later, two sad girls handed me a pile of purple plastic. "I told you so," I didn't say. And that was the end of the fair for this year. 

Summer of Love

I think it would not be unreasonable to say that the past twelve months or so have been pretty rough, for myself and for so many of my friends. Deaths, plural. Major illnesses. Surgery, planned and unplanned. New and totally unexpected complications. And the more usual stresses and strains of parenting; exams, driving tests, music lessons, spelling lists. Big and small, because when you're already under a lot of pressure, the small challenges are at least as overwhelming as the bigger ones. It's been hard.

It's exhausting.

And now Mog is ill. She's been ill for a while, actually. Shortly before the summer holidays began, she started needing her CPAP during the day, started struggling to take proper breaths, finding sitting up for longish periods of time increasingly tricky, oh, and her back is marching into a fine twist. New medications, new treatments, new ways of coping. It hasn't stopped us from doing very much. We've still had a couple of weeks under canvas, still been visiting friends and family, but life over the past two months has been running at a faster rate than normal. And in the past week or so, a good day has been a day when she's had a whole three hours when she's not needed support to keep breathing. That's not great. She's happy, she's enjoying life. But she is tired. Maybe it's fixable, maybe it isn't. I don't know. We have various appointments coming up; perhaps we'll find a solution. 

It's taken me by surprise, just how poorly she is. Snuck up on me. I've been busy, arranging life around her new needs, juggling her issues with just getting on with everything else. And it wasn't until we were nearly ready for the new term that I realised, actually, Mog is nowhere near ready for the new school term, and cannot possibly manage a full day in school in the same way she did back in July. So, whilst we're looking for answers, I'm taking her to school myself for a few hours at a time. Something which I've never wanted to do. But something which is now totally right. Not forever; I hope we'll find a more sustainable solution (because if Mog can only manage 3 hours without support in her breathing, I need to spend part of those three hours doing little things like shopping and keeping the house ticking over, and sitting beside her in a classroom doesn't really help with that). But for now, it's the right thing to be doing, and it is good to get an insight into how her school day runs.

It's hard.

Mog's teacher was Goldie's teacher, and on our first day in class, she showed me a beautiful slideshow of photos I'd never seen before, photos of Goldie in school. Beautiful photos, a precious gift (which will be all the more precious once emailed to me so I can use them myself), and a truly lovely thought. But a bit of an emotional hammer as I sat hooking Mog up to the oxygen she's never needed in school before.

For our next project, we combined the colour purple and butterflies to make a lovely name frame for Mog's photo. Again, beautiful. But local friends will understand why purple butterflies might be another hammer.

Another day, a new nurse in class (supporting another child). A nurse who knew us through yet another of our too-soon-gone friends. Another hammer.

All good, all lovely, but every one another reminder of the immense fragility of this life.

But God. Our God is able. Every year we go to New Wine, every year I come to know God in a different way. This year, we thought ahead. We booked our carers in a different way, dividing them up amongst our children to ensure all four (we camp with a friend and her two children) were covered, enabling us as adults to spend time at the feet of God without having also to spend time with children at our feet. Beautiful. Worship. Prayer. Teaching. Coffee. Lovely.

And then two days in, Mog got tired, and couldn't manage the children's sessions, and came to join us instead. And tLP decided she couldn't face the evening sessions - child or adult - and I spent my mornings with God and with Mog together, and my evenings hunched over a radio listening to the services whilst sorting meds and nebs and ventilators and smiling at a bouncy toddler jumping on our lilos.

And I was tired, and I was a little bit grumpy, and quite a lot cross, and resentful of the fact that just about everyone else on site seemed to be having a better time of it, a more fulfilling time, a more intimate connection to God, and here was I, sitting in a tent washing syringes.

And then I stopped grumbling, and just sat and listened, and finally God could speak. And He said that I was right where He wanted me to be. That this life, parenting these children, befriending these friends, walking alongside these people, sharing lives with these families, this, back in the past and right here and now, this was exactly where I was supposed to be doing and there was absolutely nothing more important than this.

We are built to worship God. But what that worship looks like is going to be different for each of us, and different at different times of life. I am a parent, daughter, sister, friend, neighbour. I was created to be this parent, this friend, this neighbour. Jumping up and down on stage with Martin Smith, as our friends got to do, is a fairly obviously awesome way to worship God (even if your trousers do fall down). Picking crusty bits off a manky gastrostomy is perhaps a less popular form of worship. But it's no less valid.

This has been a hard summer. But it's also been a summer where love has been poured out over us. Here we are, "Team Purple" at New Wine. "Extravagant Love" say our adult adult (as opposed to younger generation enthusiastic blonde carer adult) sweatshirts. "I'm God's Brilliant Idea" say Mog and her Knight's. And God has shown this so much. From the stranger standing behind us who stopped to pray. And came back to pray again. And again. Because God had more to say, and more loving affirmations to give. To the speaker who knew exactly what I was thinking. And stopped to tell me I was wrong. And loved. To the strangers who stopped another stranger to run after us (in order to ensure anonymity), and who passed on a large amount of cash to bless us for the work we do. To the artist whose paintings in the gallery were just perfect; completely right for our walls at home. 

Love poured out by strangers and friends who worked so hard on Mog's quilt, and who are working now on tLP's. Love poured out professionally, in the form of extra respite just when it was needed most. In battles being taken on by other people, before I've even asked. In solutions being found before the problem has been fully identified.

We are here because right here is where we need to be. I don't understand it all, I can't possibly. But God does. From our week in the sun last October, to a precious weekend in April, to two special weeks this summer, from the perfect bar of chocolate to finding that missing odd sock, and from waking to sleeping and even when I sleep, this is the year of the Lord's favour. His life, for me.
No matter what.

The Year of the Lord’s Favour

Isaiah 61
1 The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,
² to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
³     and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.





Tia

Love Quilts

Way back around the start of the year, we were lucky enough to grab an open spot and sign Mog up for a Love Quilt. Www.lovequiltsuk.com is an amazing place. 

Over the past eight months, we've watched and been excited to see Mog's quilt open for stitchers, and then to watch the stitched squares come in. 

Slowly, the quilt has become more visible as different people have sent in their finished masterpieces. And then the squares were sent to a wonderful quilter, to be transformed from a pile of aida into the most beautiful creation I've ever seen. 

The quilt was delivered to us this morning, just in time to take it with us for a stay at Helen House. 

It's beautiful. It's a Love Quilt. Stitched with love by friends and strangers, locally and from around the world. 

I don't know who the homeschool cross stitchers group are, nor where in the USA they are from. But I can imagine them being a group of girls a similar age to Mog, getting sore fingers as they learn to respect the embroidery needles, passing the square around and learning about tensions and techniques, and all for a girl they know nothing about. Kirsten, Kate, Trinitee, and Sophie; thank you. 

I do know a number of the other stitchers, and thank you both to those I do know and those I don't; I know it was a real sacrifice of love. 

To Kat and Gaynor who run Love Quilts, to Valerie for her wonderful quilting, and to all those who have donated fabric or funds for supplies; thank you. 

I have made blankets for Mog in the past. But this is exquisite. And so humbling to think about the many many hours of work which has gone into it. 

We're at Helen House now. Mog's had a bit of a difficult summer, and we're all three of us very ready for a break. But snuggled up under her Love Quilt, Mog has gone straight to sleep even in a strange bed, with the noises of the hospice surrounding her. 

Thank you. 

Tia (And Mog). 

Happiness is

Different things to different people (to a singer, it's a yeah, yeah yeah; to a preacher, it's a prayer prayer prayer). 

To a friend it's excellent news and a new phase in her life. To her friends and family, it's big sparkly smiles. 

To a child, it's a dress, lovingly made by three girls together. And a pile of birthday presents to give to a Grannie. 

To me, it's a fixed computer, and even more than that, it's the discovery oh photos on my phone which is somehow missed when I took them.

And a photo demonstrating what happiness means to two loving friends who live too far apart. For some of us, the day this photo was taken might have represented disappointment. A day for families to come together, and yet we needed to take refuge in our tent against the rain. Disappointment maybe. But not for them. 

And then of course other memories of the sane day, of discovering a familial resemblance between a friend and a campsite's pet alpacas (sadly no photo). Laughter, shared jokes, and two children free to hold each other when no longer restricted by gravity. 

That's what happiness is. (Earworm, anyone?). 

Tia

Six

It's August Bank Holiday again. The good one, the one which marks the beginning of the end of the school holiday; get through it and chances are you'll have about a week to sort all the back-to-school stuff, dig out piles of festering school uniforms, don biohazard suits and smuggle worse than festering lunch boxes into the centre of the rubbish bin, chase up school transport and attempt to find at least one pair of clean white socks. All in the knowledge that, very shortly, you can expect to have several hours breathing space all to yourself five whole days every week. 

And if we're not away, then Bank Holiday Monday should be a day of celebration. I don't remember the reason why we have the holiday; it's close enough to Mum's Birthday that perhaps the whole nation celebrates it. I'm sure she deserves a national holiday, even if possibly that's not really the reason. 

Six years ago, I was gathering small girls (can they really have been just five and two? Ever?), and getting ourselves ready to grab the bigger girl and head out somewhere as a family, when the phone rang. 

A phone call which changed this world forever, which divided my life into before and after. 

An accident, bath water too hot, Goldie in A and E and could I come up please? 

Did you know, if your child isn't legally your own, if you're not legally next of kin, they won't let you into resus? Instead, you get to pace around outside whilst no one tells you what's happening, and you look at the pile of drunks and people with cut lips and bad coughs, and you want to scream at them all to Go Home and stop Wasting Time because some people have had Real Accidents? Yep, turns out waiting for news, I'm not a very nice or patient person. 

Did you know, when someone is badly scalded, they wrap them in bubble wrap to stop the skin falling off? And when someone has been very badly scalded, they can't chill the burn but instead have to keep warming the person so they don't go into shock, even if that means continuing to cook the scald? And did you know, if there are no beds locally, and you have to transfer to a hospital two hours away, the nurse who goes on transport won't be allowed to give morphine en route? So you'll have to go easy on the doses when you're waiting to be transferred, so they can top you up nicely before you leave. Too bad if you get stuck in traffic on the way though. 

It was morning when the phone call came; around half past eight. It was well into the wee small hours when I got back home, and I will be forever thankful to the friends who took over responsibility for the smalls so I could concentrate on the bigger girl. But I wonder where the day went? I remember the waiting room, I remember the resus room. And the ambulance, and the giant scales at the entrance to the hospital which weighed Goldie, bed and all, and the new room, and the surgeons and anaesthetist and the generally good prognosis. But I don't remember the day. 

And yet, this not remembering, this is what I remember this week. The dates don't matter; this was the day, these were the events. 

We were supposed to have been going on holiday on the Tuesday, narrow boating with friends. They went; we stayed, and the surgeons muttered and started looking more serious, whilst the hospital rules banning under sixteens kept us apart more than the distances involved. 

Six years; more than half Mog's life, and 3/4s of tLP's. How can this be? 

Did you know Goldie was not the first young disabled adult to have difficulty with a too-hot bath? "Never again" they said, after my ex-key-pupil received second degree burns in her new care home. "Never Again" would appear to have a shelf life of around five years. 

Both girls, sorry, young women, were seriously physically disabled. Both were incapable of getting into a bath themselves. In both cases, a pair of carers both failed to notice the heat of the water as they pressed the hoist control buttons and steadied the slings to slowly lower the individual. 

They deserved better. L survived, Goldie did not. Neither deserved the pain and suffering. 

I've said before I don't blame the carers, and, well, six years on, mostly I still don't. But when the thermostat had failed, and the failsafe had failed, and all the other steps had been taken to remove risk from the Not-A-Care-Home environment, those carers were the last people who had any kind of ability to prevent the accident and skip the suffering. 

People, buy your carers bath thermometers, and insist on them being used. 

Last week I watched a small girl fold herself in two and post her feet up towards her ears to prevent her body coming into contact with water which was too hot. It wasn't dangerously hot; just too hot for that small girl's comfort. A bowl of cold water into the bucket and all was well again. I know the carer who filled that bucket, and I know she would never ever do anything to hurt that child - I know how mutual the love is between them. But we do have the ability to heat water very hot, and we don't all have the ability to assess just how hot that water will feel to someone with thinner, more vulnerable skin. Buy that thermometer. Use it. And in the interim, use your elbow, not your hand. And, if you work in a residential environment where you might be taking care of an awful lot of vulnerable children or adults, don't use the line "We're not a care home" when I query your lack of thermometers. Remember my history, humour me, and use the thermometers. 

Dipping a thermometer into Goldie's bath water would have saved her life. It would have saved her a week of agony, and saved those of us who knew her and loved her six years of grief. It would have taken less than a minute, and cost less than a fiver. 

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

Bury me in paper

Because I'm currently attempting to deal with a pile approximately six foot deep.

A while ago, I realised the girls' passports were on the point of expiry. Being the active, coordinated, organised person that I am, I waited until they had both completely expired, and then filled in various forms online to begin the renewal process.

I then put the passports back with the savings books, made a mental note of the fact Mog's SGO paper wasn't with them, and waited for the prefilled forms to arrive in the post.

Meanwhile, letters arrived warning me the girls' blue badges were due to run out, and inviting me to apply early for replacements, as they could take ten weeks.

These I shelved with the passport applications and tax credit stuff. And tax return stuff until I had a chance to get into town with both girls for passport photos.

Interlude for spinal surgery, convalescence, and a sick Mog.

And then a sudden, panicked realisation that the blue badges (disability parking permits) were due to run out next week, and that the 8 week renewal period would not condense itself into 8 days.

Fun fact: to renew an application for a blue badge now requires more documentation than a passport renewal.

For tLP's passport application, I must supply one form, correctly filled in, one expired passport, two photos countersigned on the back, and a fat cheque for sum as yet undetermined.

For tLP's blue badge renewal, I must fill out one form online, and consent to the powers that be contacting her school for proof that she really does live here. I must supply proof that she she is physically disabled. I must supply a passport photo. And a birth certificate or copy of her adoption order. And a cheque for five times as much as the badge used to cost.

For Mog I need also to supply a copy of her special guardianship order for her blue badge, and the original SGO for her passport.


Blue badge being more urgent than a passport, I decide to focus on these forms first. They take me three days. I am invited to pay electronically. I do so, only to be told online payments (the one they just collected all my credit card info for) are not possible. Frustration.

So, Blue Badge paperwork eventually collated, 14 digit tracking order attached to each pile of paperwork together with note explaining special guardianship. And then the memory that the SGO paper was not with the passports.

Nor is it with the other pile of important documents. Not in the filing cabinet, not in the emergency paperwork stash behind the computer, not in the Very Important Stuff drawer in the dresser, not in any of the book cases...you get the picture.

A thought. We always take it with us when we travel abroad; it is the proof that I am one of Mog's parents. The passports came home but the SGO did not; could it be with my friend and travel mate's paperwork?

Problem. It's been six months since we travelled, and friend has some memory problems at the moment.

Amazingly; friend puts her hands on the SGO within 2 minutes of my phone call, and brings it round.

Marvellous.

Paperwork finally complete, I am about to seal the envelope, when I realise sending the SGO off with the blue badge applications will mean I cannot apply for a passport for another 8 weeks. Not that we have travel plans, but I do like to think we might one day.

So a further delay whilst we run to the library to photocopy essential documents. And finally, finally, the Blue Badge paperwork is on its way.

Meanwhile, I attempt to fill in the passport applications. And immediately manage to invalidate one form by signing in the wrong box, and the other by putting a Date of Birth instead of a Date of Signing. Deep sigh. And off to the post office for new forms.

So, new forms signed. Friend primed to ID the photos. Two neat envelopes with everything we need. Just need to add the expired passports.

The expired passports which I haven't seen in any of the mammoth paperwork hunt I've done over the past couple of days. The expired passports which I put in a safe place with the savings books.

Anyone seen them?

And will I find them before I lose the application forms, or before tLP runs over the photographs again?

Can it please be September soon?

Hailstones and harvest

Because its been a random kind of day.

Tia

The gift of exhaustion.

Mog's been ill. Still not right, but much, much better with a couple of slightly cooler days. And after a not-too-bad day yesterday (no CPAP, minimal oxygen, only three nebs and less than half a box of suction caths), I thought we might be over the worst of it.

Until she went to bed.

I didn't see a time beginning with 12. But I was up to her at 11.40, 1.04, 2.14, 3.33, 4.12, up anyway at 5.15, and up to Amana at 6.06. * It's safe to say I was more than a little tires when our carer arrived at 7.

So we dragged ourselves off to church, where I missed most of the service thanks to a very noisy Mog, and I sat on a green chair feeling very tired and very sorry for myself and really rather blue. I do a good line in woe-is-me. It's not attractive.

And we sang to God, and I realised then I was sitting with dear friend's who would probably give an awful lot to be this tired for the same reason again. And I thought back to the help I've had this past week, from another friend who would swap months of sleep for another night caring for her son. And friends nearby, and friends further away, all of whom no longer have this "burden." And I was ashamed.

This tiredness; I treasure it. In the silence of the night I can smooth wrinkly sheets and smell my daughter's beautiful soft skin, and I still get to make a significant difference to her life by relatively small actions. A slightly awkward snuggle as I wrestle with the nebuliser, shared smiles at a successful suction, the satisfaction of hearing hoarse breathing ease as I find just the right position with just the right balance of pillows and supports. This - this is every bit as memorable and even more important than the Disney trips, the rollercoasters, the Big Moments. Because this is the every day minutiae magnified until not even I can miss it. This is why we are together, how we came to be mother and daughter; this is what I was created for. And there is nothing more important than this.


And so we go home, and I get the working nebuliser (yep, killed the other one), feed tLP and stiffen my own spine to heft her from one wheelchair to another; life goes on and I will welcome all of it.

And then tLP turns around and asks me - mid treatment - "When's she going to be dead?"

And I take a deep breath (and Mog doesn't, but she will again at some point), and try to reassure both girls that she's just poorly. But we've had too many "S/he was poorly....and then" friends this past year, and we're all scarred.

She is just poorly. And tired. And we are managing alright at home, with lots of help and cooling fans coming. So we talk about how, most of the time, getting poorly ends up with getting better again. And tLP asks to make chocolate brownies, and so we do, and this - and eating them - was also what I was created to do. With incredible expanding stomach to protect my daughters from the same fate.

I'm in bed now. Just waiting for the washing machine to stop spinning, so I can yank out anything which needs ironing, and hang it up before our ironing lady comes in the morning. Because here's the thing - yes, I'm tired. But I am not alone, and we have our ironing lady and our cleaner and our mower-of-dead-lawns-and-gentle-lecturer-about-the-importance-of-watering guy. And so there's very very little I actually have to do, beyond caring for the girls. Which is good, because there's very little else I'd rather be doing. God knows what He's doing.

Mog's coughing.
Must go.
Tia


*side note: wish I could remember useful things like sort the blue badges before they both expire next month, fix the printer, find the stapler. But instead I am blessed with the ability to close my eyes and see all the times I was dragged out of bed. Not counting the leaf-on-the-head special cat treatment.

One of Those Days

A day with a lie in, as Mog was in respite.

A day with a nice appointment in the morning, a hospital appt in the afternoon, a lazy evening (see above re: Mog in respite).

A wheelchair accidentally purchased - looking to be just right for tLP, once she has permission to self-propel once more. Some chatting and sorting of payments, courier, etcetera and so on.

And then.

Mog unwell in respite, being well cared for and no need to panic, but thoughts and phone calls to try to sort things out.

News from another friend about the tragic and unnecessary death of another young adult with learning disabilities, in a different and unrelated bath accident. People, baths are dangerous! Enjoy them, use them, make the most of them, but employ common sense and basic health and safety protocols around them. Please.

A friend's daughter unwell, and another friend also struggling. More unwellness from Mog, and a request to visit before the afternoon's hospital appt.

A quick trip to respite to see a Mog on CPAP in the middle of the day, with new meds not helping and heat definitely hindering. A decision to try to hurry tLP's appointment, and then to fetch Mog and bring her home. Not because respite can't cope, but because a middle of the night crisis is easier to deal with here than it is eight miles away.

Off to hospital, and squeak into the last parking space. Into a suspiciously empty outpatients department. Oops, wrong hospital. Off to children's hospital, now 20 minutes late, but never mind; clinic is at least 90 minutes late, so that won't make a difference.

Back to Mog, scoop her into the bus, enjoy the air conditioning, and crawl home through the rush hour.

Arrive home to find nurse from respite has beaten us there, and is waiting to help us unpack, and sort Mog. Hurrah!

A different kind of semi-relaxed evening; Mog "not right" but being supported by very nice nurse. Who is also managing to entertain (or be entertained by) tLP. Carer turns up to help tLP too, and I sit down to catch up with the rest of the world. And discover a message about this morning's nice and exciting meeting, which had completely slipped my mind. Oops.

Many apologies.

Girls in bed, new meds given alongside old, and Mog settled, ish; asleep but very very not right. Still, her SATs are better than my friend's daughter's; and if her resps are better than Mog's, that's probably because she has a ventilator not just CPAP. It's the kind of contest we like to win, although we'd quite like it if there weren't a loser.

And for now, the house is quiet. So I need to make the most of that. If anyone was expecting me to have done anything today; I haven't. Sorry. Here's why.

Tia

Mog's Sunday.

It was a ROSY Sunday; the annual picnic for ROSY families. Beautiful surroundings, bouncy castle, tattoos and balloons, Soundabout, and children, children everywhere. Oh, and peacocks.

Mog wanted to stretch out on the soft green grass, but wasn't interested in joining in with anything else. Soundabout - one of her favourite activities - ignored completely, not even the hint of a flicker of a smile as Soyndabout Steve sang and played for her. Perhaps she, like me, was rather too aware of the huge number of Soundabout children missing from the gathering. Empty chairs. A lovely afternoon, beautiful weather, good friends, oodles of cake. But too many missing children this year.

And then time to go home, ad for complicated reasons to do with the occasional apparent injustice involved in being the youngest child when the older one has finished exams and left school, combined with transport issues, it was necessary to call in and visit some puppies on the way home.

I didn't bother unloading a non-responsive Mog from the car. She'd opted out of everything else, wasn't talking to me or being particularly present at all, and had been enjoying a fine game of seizure tennis with a friend of ours earlier in the day.

But after tLP and our friends had had their puppy fix (ok me too, seriously people, is there anything cuter than a pile of 8 week old puppies all scrambling for food and love?), one little puppy was brought out to say hello to Mog.

And non-responsive, mostly absent Mog left the building, to be replaced with a very enthusiastic happy smiling utterly absorbed 11 year old, who was completely besotted by the pile of scrumptiousness attempting to lick her chin.

And then we callously returned the puppy and drive home. But Mog remembered, and wanted me to make sure that school knew so it could be her news item.

And now both girls are ganging up on me and demanding a puppy. It's not happening. We are not having one. However much tLP makes bambi eyes and Imi shouts her silent yes.

But I know she enjoyed the snuggles. - just see the difference between Mog with puppies, and Mog with perfect afternoon full of Mog-centred attention and activity.

Tia

In my little garden.

This house is definitely ganging up on me. Currently, it's the computer playing up, having added refusal to recognise the keyboard to refusal to print anything.

This means picture posts have been few and far between, blogger app not being willing to allow me to assign any kind of order to uploaded photos. But eventually, the choice becomes, blog with the photos out of order, or call time on the blog and retreat to a corner somewhere.

So here, in an annoyingly out-of-sequence fashion, is the story of tLP's garden.

A friend and I went out to a garden centre one day. And found a rather lovely raised bed. We thought this might in fact entice tLP away from the iPad and into the great outdoors.

It did.

Sadly, it came as a flat pack, with no assembly instructions, and no handily marked holes for inserting screws.

TLP and I spent a frustrating evening collecting blisters and achieving very little.

Then a friend came to our rescue and managed in 15 minutes what we had not managed in several hours the night before. Hurrah.

So tLP and I filled the new garden patch with soil. Lots of soil. 120 litres of all purpose compost, finely mixed with enough water to turn it into a slightly solid slurry (say that six times swiftly). And then tLP planted her vegetables. Purple broccoli, sugar peas, round carrots, and a giant strawberry plant.

And the sun shone, and the watering can moistened, and just two days after planting, the strawberry plant yielded its first fruits. And now tLP is gathering 1-2 strawberries a day. And one day I'll get a picture of a ripe one, freshly picked, but for now she's eating them as soon as she can reach them. Which is good too; anything which gets her eating something vaguely healthy without complaint is a Good Thing.

The peas are winding their way up some seriously abbreviated canes, the carrot tops are waving freely, and the purple broccoli is a very defiant green still. Planting density is around 9 times what's recommended. But it's just outside her bedroom window, and she can see it from her bed, and she loves it.

Here's hoping the vegetables grow as nicely as the strawberries. Question for those in the know; I can see for myself when the peas and broccoli will be ready, but how does one check the progress of the carrots?

Tia

Tired

Yesterday afternoon, I stood up to do something, and I realised that I wasn't tired. For two blissfully energised hours, I stayed not tired. If I sat down, getting up was just a question of straightening out. Moving from one room to another just entailed picking feet up and putting them down again in slightly different positions. And when I reached my destination, I knew what I was supposed to be doing at it.

I heard every word of every sentence anyone spoke in my general direction, not phasing in and out of conversations. I coordinated a real proper several-steps-involved meal, and persuaded tLP to eat it. I piled Mog into bed and pyjamas and didn't feel lightheaded with the effort.

And then the fog rolled back in, and the vagues stole my thoughts, and someone or something strapped invisible weights back onto my legs and arms and neck and back, my ears were filled with treacle once again, and I was back to being tired.

It's been a long time since I wasn't tired. So long in fact, that I'd forgotten what normal felt like. I used to have energy. Getting up off the settee wasn't something I had to plan.

This will pass. Being in hospital, and then being home with a very reluctant convalescent who needs frequent attention overnight and full on attention all day is both tiring and thankfully temporary. Demousing the house was fairly full on too. Planning and hosting Mog's Marvellous Birthday Party was well worth it, but definitely added to gravity's already exceptional pull. Working to a deadline on a few minor projects has added to the brain fog. Its been a rough year for many reasons. I can see where it's all come from.

But still, I am surprised. Normal was good - how did this level of tiredness become my new normal without me noticing it? And what, short of abandoning the girls completely for a few days (not an option for several reasons) can I do about it?

In the meantime, kindly forgive the extreme "blogging lite" which has been going on lately. I'm just starting to realise quite how tired I actually am. Too tired to put that sentence in better order, certainly.

Must go, Mog's fitting (don't panic; it's normal. But I need to adjust her cushions so she doesn't bruise her arm on her bed side).

Tia