Saturday, 28 February 2009

I like Saturdays in Spring, how about you?

Spring has sprung
and the garden is waking up. I'd make this into a beautiful "Tia and her girls spend a brisk spring day doing wholesome type things in their garden" post except that we didn't, and the truth will out. We might have done, except for the fact that the cats appear to have abandoned the shady flowerbed under one of our flowering currants in favour of the lawn, which is as a result covered in cat poo, in various stages of disintegration. On a plus side, the flowerbeds are looking great! But until I can bring myself to somehow gather all the piles of poo and post them somewhere (I'm thinking the compost bin wouldn't be too happy to have them?), we won't be spending a lot of time sitting in the back garden.

So, we did what girls do in times of crisis. We went shopping. We had three things on our list. One hour in, we had acheived this:She's pleased with them.
Little Fish on the other hand is less easily impressed. She was measured, she was given a few pairs to choose from. I then vetoed half the pairs due to allergies (how can a child be allergic to shoes, ridiculous), at which point she decided she didn't want any new ones at all. My bank balance thanks her.

Or it would, if she hadn't then decided we needed "dinner shop, pleeeeeese Mummy?"

Since by this point we also needed to do the cathing thing again, it seemed like a reasonable suggestion. We found a cafe with a perfect "have to cath a small child" cubicle, did the business and had a nice lunch. And as we left the cafe, Little Fish picked a tiny bit of leftover from her knee and popped it in her mouth, chewed and swallowed, and then turned to me and said "that was a lovely dinner, Mummy, thank you very much." Sometimes it's nice having a verbal child.

No luck with the rest of our shopping (side note: where do you buy big girl pants for little girls when Woollies and Adams have closed down, and the only other shop in town only stocks frilly knickers for babies and cropped ones for six year olds?), so we hit Waitrose where LF was delighted to bump into Grannie and Great Grannie and Grandad. Mog meanwhile declined to show off her new shoes and indicated her disdain for mere food shopping instead.

Home again, and back to chaos. Home to two cats, who are both seriously disgusted with me. Comeback has been placed on a renal diet, to complement his kidney and thyroid medications. He is not impressed with this, licks small amounts of gravy and then stands in the middle of the room, crying loudly. Goway is fascinated by the ludicrously expensive renal diet dried food and insists on emptying the bowl, refusing to have his own high-protein food. Little Fish sees me standing in the middle of the room coaxing them both to eat their own food and talking about how delicious it is, and decides to try it out for herself.
And then it is bedtime, and I separate Little Fish from the cat food and parcel her into bed. She is not impressed with this and tells me "Wee Wee in your Mouth Mumma". Now there's a curse. Mog is even less impressed, and switches from quiet but happy to full of spasm and scream and outrage before I have even closed the sides to her bed. We had four hours of this last night, so rather than wrestle through it again I fish her out and put her into her armchair. Where the roars settle to whimpers, but the problem is not solved. I clip her collar back around her and she relaxes. This is not great; she can't wear it twenty four hours a day, we don't have enough socks to keep changing the covers, she will get such a sore chin from it.

So I have a cat who won't eat his prescription food, a cat who won't stop eating the other cat's prescription food, a girl who won't stop eating and one who won't stop crying except to demonstrate her beautiful stridor. I'm considering rethinking my position as functional adult in this household, any takers?

Tia

Friday, 27 February 2009

The Princess and the Pin

Remember the story of the Princess and the Pea?

Mog is our very own princess. She always knew this, but we now have proof. Here is her bed.
She's not been very happy in it for the past couple of nights. And so I took it apart and put it back together again, trying to make it comfortable for her. And I took out the sheepskin, the thick fleece blanket, the beanbag. And found this
Pointy end down, but clearly enough even through all those layers plus a fairly substantial inco pad, to cause her to toss and turn all night with barely a wink of sleep.

I took it away. And this was going to be a post about how sweetly she is now sleeping without it digging in. But unfortunately she's just woken up howling, so it won't be.

I wish I knew what was bothering her now. She's had her medicines, she's had painkillers. The bed is smooth, she's been fed and winded, she has her favourite music playing softly and she was tired tired tired. She isn't fitting, she isn't puking, she isn't constipated. She is just plain miserable.

And it's a shame; she's had a really great evening. A better evening than we've had for months. She was alert, bossy even. Kicked my grandmother as well as Little Fish, got really excited about the idea of shopping for Spring Shoes tomorrow, and obviously bored by the idea of shopping for birthday presents for other people. Shouted over Little Fish's own Birthday plans until we reached an understanding about what she'd like for her own birthday. Shouted again over our holiday plans until we agreed with her that yes, we would be on holiday over her Birthday this year. Paused for a short seizure, and then carried right on in shouting and kicking until we had identified her wish for strawberries with chocolate cake for her birthday. And only after those points were decided would she agree to sit quietly and listen to Little Fish decide on her own Birthday treats. It was fun!

And then she got ready for bed, and she was happy. And she got into bed, and she was happy and settled and relaxed. And now she is weeping and wailing and I don't know why.

Suppose I'd better go and try to work it out really.
Tia

Thursday, 26 February 2009

Camo-cat

Watch where you tread!
Tia

Growing a family

It's been three years now since Little Fish joined our family, four years since I first heard about her. Mog's been here for seven years, and I first met Goldie ten years ago now. If the girls had been born to me on the dates when they moved in, there would be the same age gaps between them as between my brothers and I. And in a neatish twist, I was the same age when each girl arrived as was Mum when we came along.

So far, so parallel.

But my parents did not have to prove their ability to parent before they were allowed to take their children home from hospital. They didn't have to stand in front of a panel and be asked questions about their reasons for wishing to parent, valid questions perhaps about why I was choosing to adopt after years of fostering, but inane questions too about why I take children camping. I don't mind being asked, but I did mind having to dress up in my best clothes, leave my girls with a relative stranger to sit in a room in front of a judicious looking panel, a panel with the right to approve or disapprove my application to adopt, only to be asked how I pitch tents.

I'd say that all my parents had to do was get (and stay) pregnant, except I know that's not necessarily easy or possible, and I'd hate to appear flippant about something which causes so many people such heartbreak.

But there's no requirement for birth children to have their own bedroom. The hospital midwives don't come to visit prior to discharge, ensuring you have plug socket covers (which may actually be more dangerous than having uncovered sockets, at least here in the UK), keep your wine in a locked cupboard, and have no foxgloves or other dangerous plants in your garden. When you go for your 22 week scan, the scanner doesn't insist on interviewing your parents and best friends before giving you the results and the photograph.

Try growing your family without giving birth and not only are there hosts of rules and regulations*, you're also regulated by the opinions of those who have the power to make the decisions. People who look at the paperwork and not at the family, who have their own ideas about why I might be doing this or what our lives must be like, rather than knowing us and seeing how we are.

Imagine being told you're pregnant, and three days later discovering you aren't after all. That's pretty much how it feels when you're told a new placement is coming and then the situation changes, or people change their minds, and there's a brief phonecall saying "Thanks, but you're not needed any more". It doesn't matter how little information you had about that particular placement; for those three days you were juggling bedrooms, sorting clothes, checking through the diary to see what might need tweaking. And then you're left with an empty cot and a box full of newly cleaned and organised popper vests. And yes, of course there will be a next time, but there's no timescale, no guarantee it won't happen again next time, only the ache that it wasn't the case this time around.

But more than that, there's the knowledge that nothing I can do can change this. There are no vitamin supplements I can be taking, no routines to follow, getting more rest or losing the stress isn't going to change the outcome. It's all down to a group of people, most of whom have never met me, who look at the information on the paperwork. And I know, on paper, we're never going to be the first choice. Single parent, two high-need children, what on earth is she doing even thinking she could take another?

The really important things get somehow lost; they're not so quantifiable. I'm actually pretty good at this, or at least I think I am. Sounds arrogant? Perhaps. But then, this is what I was made for. This is what I do; it's my job and my life and my love. It's not easy - nothing worthwhile ever is. That doesn't mean I shouldn't be doing it.

Little Fish would love a younger sibling, for however long or short a time. Mog just thinks small children are funny, especially when they cry. I know what I want. And I know there are so many children out there, surely one at least must be in need of our kind of fruit-loop family? It's been nine months since we were needed for anything more than a very planned respite; three years before that. In those three years, my girls have had two new first cousins, two second cousins (with a third on the way), and have seen friends' and classmates' families grow by one or sometimes two siblings. And yet we wait, knowing we will always be at the bottom of the list, only used once there aren't any spare beds anywhere else, and the "Mumma, why I not have a baby?" question gets as hard to answer as the "Mumma, why I not got a Daddy?"

It is of course right that the child should go to the best possible place. It is right to have more than one family under consideration; children should not be placed by defaultbut after careful consideration of all the options. Plans can and should and do change at the last minute. And decisions should always be based on what's right for the child. But another time, I'd like to see "Thanks for your kind offer, but you won't be needed" replaced with "I'm really sorry, but..." I didn't offer; you asked me, and I said yes. Now you're saying no, please be aware I might find this somewhat disappointing. And please don't prolong the phonecall by talking about something non-urgent which could wait for a while.

Tia

*I'd here just like to say that any regulation which actually works for the good of the child, which keeps the child safe and is genuinely child-centered, has my full support.

Wednesday, 25 February 2009

Perspective

Today has been a frustrating day, full of petty annoyances.

Having to wait in for the engineer from the company which insure our hoists to come and check the work that the engineer from the company which supply the hoists did a few weeks ago.

Waiting in again for the wheelchair repair company to bring Little Fish's new wheel, an appointment which has been rearranged several times - firstly as insufficient parts ordered, secondly due to weather, thirdly due to weather again. The engineer turned up today and discovered that he still did not have all the parts necessary, so gathered Little Fish's wheelchair up and threw it in his van, where it will now sit until he does have the full piece of kit.

Turning the ten minute walk-to-preschool-drop-child-off-walk-home-again run into a much longer walk-child-to-preschool-move-all-waiting-parents-away-from-door-of-disabled-loo-cath-child-then-drop-off-and-try-to-explain-urodynamics-to-uninitiated run, followed by somewhat truncated free time due to need to return to preschool early to do the next cathing session. The actual process takes around two minutes, but having to be somewhere to do it every two hours makes getting anywhere else to do anything else at all rather tricky.

Little Fish turns four next month, the continence service around here will supply free incontinence supplies after a child's birthday. I phoned the health visitors to get this set up. They told me to phone the continence service direct. I phoned the continence service. They passed me on to the continence nurse. Who passed me back to the health visitors to get a referral done. Who then didn't know how to do a referral, and then did, but needed to fill in a lengthy form, and needed to phone back another three times to check different parts of that form.

A long chat with the school nurse (not for preschool) and the realisation that training school staff in cathing LF is not going to be a quick process either; I am going to be tied to two hourly visits there as well as to preschool until at least Easter.

Several chases around the house to pin down both cats and pump them full of pills, spray one full of steroids, etcetera.

All of us home finally and a speech therapy session for Little Fish sabotaged by LF who refused to cooperate in any way, shape or form.

And then this news


I've lost one child. Every family is different, but I do know a little about how it feels to have a child die. And now I have one child who is the same age as little Ivan, with severe cerebral palsy, severe intractible epilepsy, and who has had a rough few months. I was holding her extra tight tonight, but she objected and wanted to go to bed and listen to music. So she is cooing in bed, and I am writing this.

My heart goes out to Mr and Mrs Cameron. There was a fair amount of publicity over Goldie's death at the time; nothing like the mass news-fest happening at the moment, but more than enough to turn our loss into public property. I hope and pray that the Camerons can switch off the televisions and silence the radios and hide the telephones for a while whilst they adjust to this new and emptier world. And I sincerely hope that they will be protected from those who would try to tell them it was all for the best. A family mourning the loss of their precious oldest child who was much loved.

I'll take my frustrations, please. I'll keep the phonecalls, the appointments, the running around achieving nothing and just trying to catch up with myself. It is infinitely better than the alternative.
Tia

Tuesday, 24 February 2009

Mother in Training?

Now how long before she's reliable enough to take Mog for walks for me?
. video
Tia
ps - and how long before the council repair that fence and people stop walking and cycling over my garden?

Monday, 23 February 2009

A cathing wee will go...

This morning we had a follow-up from December's Urodynamics appointment.

Little Fish started on her "wee wee medicine" in January, and has been having beautifully flushed cheeks ever since. We were warned to watch out for urine infections; instead we have had some wonderful side effects - the oxybutinin has dried up her dribble, enabling her to pronounce her "S"s and move her tongue without drowning, it's given her a healthy glow and lovely warm fingers, and she seems to have been managing to go longer between wees.

So the plan for today was to sit Little Fish on her "wee wee nurse"'s "wee machine" (a special commode which measures flow and output) until she performed, and see where we should go from there. In preparation for this, we have spent the last 48 hours measuring Little Fish's input and output, a process which involves, scales, syringes, gloves, and if you aren't familiar with the process I strongly advise you not to use your imagination.

The charts were filled in, the nurse reviewed them, LF sat on the pot. And nothing. And nothing. And then a lot more nothing. So we moved LF over to the bench in preparation for a quick cath; at which point she rather kindly let loose all over the bed liner. It's obviously not the first time the weewee nurse has had to deal with this; she knew exactly how much it weighed dry so was able to work out that our clever Little Fish can now widdle 44mls at a time. Not bad; back in December it was more like 10mls.

Next step, empty her completely, which revealed the not so great news; she still had over 100mls sitting tight in her bladder. Discussion with the consultant needed, so Little Fish and I headed over to the waiting room, where we had a rather handy informal consultation with the respiratory nurse and made friends with a child waiting to see the gastrostomy nurse. And we waited. And we waited. And we waited... and then two hours later we were called back in to hear the verdict. And we emptied her again and she had 200mls sitting there.

So as of today, we are beginning Clean Intermittent Catheterisation.

We have the world's dinkiest little catheters
They extend like this:
And then open out like this:
And the rest I'll leave to your imagination.

Those who are familiar with the process will be familiar with the issues of invisibility I had this evening; I think I was more traumatised than Little Fish. We'll all be impressed though with the fact she has been dry between all the cathings; we might be needing to buy big girl pants rather sooner than we'd thought.

This and other arrangements we've made over the past few weeks seem to be combining nicely. The three-year "operation continence" could actually be achieved over the next few weeks.

But, before we get too smug about it all, there is a down side - until we've got the world trained up I'm the only one who can do it, which means I need to be calling in on her every couple of hours, wherever she happens to be. M, if you're reading this, this is no time to be poorly! Hurry up and feel better soon!

There's another down side - it's yet another thing I have to wash my hands for. Anyone got any good recommendations for moisturising soap? And someone needs to invent some nicely scented and non-drying alcohol gel - do you think dunking my hands in Baileys would have a similarly cleansing effect? I'd lick wash it off...
Tia

Sunday, 22 February 2009

Little Fish Language

The world word according to Little Fish.

Ella BellaGammy BusCarpetMost hideous evil awful torture device ever invented to torment man or beast
Which is why she has been nagging me for the past few weeks to "Cut my AIR cut my Fringe cut my AIR pleeeeeeeeeeese Mummy".
So, overcoming my reluctance after her last snip, and with a gulp for the loss of her beautiful waves,
I made a start.
And trimmed, and snipped, and combed, and snipped some more
and then stopped.
And it's not perfect, but it's a lot better than the last one!
And she is very happy with it, and the brush now moves through her hair like a knife through butter on a sunny summer's day, so I suspect the neighbours will be happier with it too!
Tia

Saturday, 21 February 2009

Chocolate Friendship Pastries

What do you do when you have a friend visiting and no inclination time to get to the shops?

Take one pack of puff pasty and roll it out thinly, spread it thickly with chocolate spread.
Add chopped nuts and melted butter.
And roll it all up, sprinkling the top with more nuts and melted butter. Kindly ignore the mushrooms.

Cut into slices around an inch thick, and shovel them onto a baking tray. Panic at potential blandness, and add more chopped nuts, brown sugar and melted butter. Melted butter plays a big part in this.

Throw into a hot oven until they look like this:And then fish them out of the butter ocean, and let them drip dry cool down.Share and enjoy!

We have just had Friend to stay. This is Friend who is coming to Switzerland with us at Easter, Friend who is therefore committed to spending two weeks in extremely close company with all three of us. Friend has not seen Little Fish for a while now, and is not terribly used to small children. She had an interesting visit, and fielded most of the constant "Wot you doin? Why?"s very well.

And then we stayed up very late, and sorted out train tickets and other holiday ideas, and then moved on to drinking wine and setting the world to rights, and then somehow it was 3AM and we were still up chatting.

The joys of small children; you can post them to bed reasonably early and have lots of silly grown up chat, and catch up on life plans and swap inane insults and analyse family dynamics, and catch up on trials and frustrations, and share sadnesses and be all excited about bright futures, and get very very giggly over nothing much at all.

The hardship of small children; if you post them into bed in good time, they wake up in good time too. Mog began her morning stirrings as we were busy making up the guest bed. And Little Fish followed too few hours behind.

I am woman, hear me roar snore.
Tia

Friday, 20 February 2009

Bob

Back in November, I had a message from Bob the Builder, saying he would be along in a week to finish our building work. When I replied only with "fine", and not "oh that's wonderful, fantastic, really looking forwards to seeing you and I'll stock up on teabags", he told me I was being very monosyllabic and then didn't turn up.

I got in touch with him again last week, and he said that he'd be out this week to finish off. It's not the first time I have heard this, so I took it with a large pinch of salt. And made plans as usual for us. Imagine then my joy, when he did turn up, on Monday, as planned, at the same time as my cleaner. As my cleaner cleared surfaces, Bob proceeded to empty windowsills onto the clean surfaces, scatter tools across the floor, and make cheerful plans for how to finish the job he started back in 2006.Thankfully, the friend who was visiting with children, including a very busy nearly-two year old boy was able to go and do her shopping and turn up later; she didn't miss Bob but she did miss the cleaner; I think our cleaner might just have spontaneously combusted if faced with six children partying on top of Bob disorganising. Bob worked hard for a few hours, and fitted a new plinth under our cupboards. He emptied the windowsill of clutter, and measured it up for a new piece of wood, for the fourth time in my memory - he has cut at least two new sills in the past but they have then vanished before being fastened down and finished off. *And he then broke the news that he wasn't quite sure how to make the ramp to connect playroom and sunroom. Now considering that Bob was aware from the start that my girls would need to be able to get in and out of the house, and considering that he built the sunroom with their needs in mind, this is more than a little annoying. He and his mate tidied up and hoovered (a Bob praise; he always aims to leave the house cleaner than when he arrives. I'm ashamed to admit that's frequently not difficult to manage), and left, promising to return on Wednesday or Thursday.

Friend and I could now allow the children to explode into the rest of the house, where they found the ballpool and bounced in and out happily so we could get on with the real business of the day, drinking tea and chatting. The children developed a great game of fishing in the pool for various toys - we have a lot of toys which talk, giggle, vibrate or light up if you press them, squeeze them, or walk too close to them. Great for children, great for inducing heart attacks in older people. So they would run in, bringing their latest find, and half a dozen clear balls for good measure, show it off, then run off to find the next Good Thing. It was only after they'd left that I found the orange box with the pliers, set square, hammer and LARGE SAW in sitting on the side of the ball pool. Way to go, Bob! And sorry Friend, but hey, at least they thought the noisy toys were more fun, right? No photograph as I picked it up and put it somewhere safe. Too safe; I have just searched the house and can't find it.

So, friends left, we rested, had another busy day on Tuesday, and then waited for Bob on Wednesday. And Thursday. Oddly, when we came back from visiting other friends yesterday, items had been moved off the windowsills once more, but no further signs of progress. And I suspect the windowsill clearers may have been more feline than furtive sill-measurers.

It's Friday. Our cleaner will be back in an hour, we're off out for the day. Will we come home to a finally finished house?

I did just mention to Bob that we now have further building works planned and that various inspectors from the local council will be in and out to measure up and move walls, etc. I was hoping that would inspire him to finish up; I now suspect that was optimistic.

Tia
*is this the most boring photograph ever to appear on a blog? Probably.

Wednesday, 18 February 2009

Dear Hospital,

We had an "urgent" appointment today. Now I don't know about you, but when I have an urgent need, I usually need to meet it within hours, if not minutes. Still, I accept that hospital time has a different flow, and six weeks is definitely better than six months. And the secretary chasing the appointment did apologise for the delay, which helped.

We'll fast forwards over six weeks with a child who is regularly obstructing her own airway, and get to today. Our appointment was at 3.30; we were in the waiting room for 3.20. There was a nicely printed note saying that your doctors aim to see everyone within thirty minutes of their appointment - fair warning I suppose.

Ninety minutes after our appointment time, we were finally ushered into the doctor's office. Not to see the consultant as arranged, but to see the registrar. The consultant was not available today. The registrar had none of my daughter's notes and no explanation for why the only information he held was three sheets of A4. My daughter's notes fill several files. The reg. took a partial history, and then carried out a 3 second examination.

He then explained that the problem was not one which surgery could fix. And that we needed to see the consultant. We know we need to see the consultant, we were under the impression that was why we had attended today. He informed us that we need to arrange another sleep study, but that even if the sleep study does show obstruction, it is not a surgical problem. And told us to make an appointment with the consultant for 2-3 months' time.

We got out to reception to find no receptionists. May I please suggest that your receptionists do actually stay in reception until there are no more patients in the waiting room? I appreciate this may cause you to have to pay them overtime. But we weren't the only patients trying to hand in the "please give this letter to the receptionist on your way out to arrange the next appointment" letters. There were in fact patients still waiting to be seen, in addition to the small queue of people waiting to go home.

Including travel time, and parking time, and waiting time, we spent around 4 hours on this appointment. We were accompanied by our community nurse, who had much better things to do than sit around in a waiting room all afternoon. We gave up one day in the middle of our half term holiday in order to do this. I appreciate that, had the notes been available, we may still have been sent away for a sleep study. But at least I could have felt that the doctor did know why we were coming to see him. I also appreciate that the consultant is busy. But we have now been sent away again to wait for an appointment with the actual consultant. If, when we were offered this appointment, it had been made clear that this was not in fact the appointment we needed, we may well have chosen to wait a few more weeks rather than waste our day achieving nothing.

My daughter gave a demonstration of the problems she is having during the appointment. We showed a video of a more significant episode. And the registrar we saw sent us away for twelve weeks. That'll make 18 weeks since we were referred, urgently, by another doctor who was unable to help. And over 26 weeks since these problems started. How many more weeks would you like this child to continue to struggle before someone decides to stop referring her on or back and actually to treat her?

Tia

Tuesday, 17 February 2009

A Family Funeral

Though I am dead, grieve not for me with tears;
Think not of death with sorrowing and fears,
I am so near that every tear you shed
Touches me, although you think me dead.
But when you laugh and sing in glad delight,
My sould is lifted upwards to the height.
Laugh and be glad for all that life is giving,
And I, thought dead, will share your joy in living.
ANON

Today we met to say a final goodbye to my Great Aunt. The church was full, the folded chairs were filled behind the pews, there were people standing at the back. The village turned out to say goodbye, the family came by car and ferry and 'plane to pay their last respects.

We, the family, got to hear about the lady the village and town knew as a keen golfer, bridge player, active member of the church. The Margaret who served on church committees, organised the flower shows, was leading a frantically busy life right up until the moment she died, in the middle of making lunch for friends.

They, the village, got to hear about the sister, aunt, great aunt, great great aunt, who had so much time for her nieces and nephews and all in the younger generation. The teacher and lecturer who was an international pioneer in her field. The keen sportswoman who represented her country for a time.

We, the younger generation, heard stories about the big sister who taught her younger sister to drive, and pulled the car out of ditches when necessary. The aunt who excelled at charades and who took her neices and nephews during the long holidays, who was always ready with entertainment and love.

And we were all for a while drawn together to celebrate the life, and mourn the loss, of an extraordinary woman. If I live to be ninety-two, then please let me be as active and as loved as she was. And if I have to die sometime, then please let me too wake up one morning, plan my day, and simply never get to finish it.

It's not a bad way to go.
Tia

Monday, 16 February 2009

Stinker, Sharer, Sibling, Carer?

There's an interesting conversation going on in one of the forums I frequent, about whether siblings of disabled children should be expected to be carers too.

I've spoken to parents on both sides of the debate. Some who believe that the non-disabled child should not be affected in any way by having a disabled sibling, must be free to live their own lives, must never be asked to carry out any caring task whatsoever. And some who believe that's the luck of the draw, we're all family so we're in this together, now please wipe your sister's chin, we're going out.

Little Fish is a sibling. She's also a disabled child, but for the purposes of our debate, she is the more able sibling. I appreciate that she is only three at the moment, and that an awful lot of three year olds enjoy helping Mummy with whatever Mummy is doing. But Little Fish can operate Mog's feed pump, come and find me when Mog is having a seizure, pick up the things Mog drops, push her from room to room, and generally carry out a long list of little things which make Mog's life better and mine easier.

Does this make her a carer? Or does this make her a sister? If Little Fish were the older child, and if Mog were the baby, all this would be pretty normal wouldn't it? Big sisters have been called upon to wipe mouths, push buggies, burp babies for as long as there have been big sisters and small people. So is it the age thing which makes this different? Or the fact that Mog will not one day wake up able to do all these things for herself?

I do know this, that Little Fish would be devastated if I pushed her away every time Mog needed help. They would both miss each other, if I started showering Mog solo, rather than allowing Little Fish to lather Mog's hair for her. And Mog would be pretty miffed if I started racing through all her care needs, so that I could post her back into the corner to get on with the real business of raising my more able daughter.

Little Fish's dolls all have disabilities. You wouldn't know it to look at them, you wouldn't know it if you were to buy them in the shop either. But once they come into this house, they become disabled. They all seem to need the regular baby related things; feeding, changing, cuddling, stripping naked and never being allowed to wear clothes. But they also need to be hoisted regularly. They finish their bottles (which may be fed via mouth, nose, or stomach), and then they are burped - like this
I don't force Little Fish into a caring role. But she is far, far happier when she is able to share in Mog's life. And realistically, that means sharing Mog's care. Or are there non-caring tasks a sibling can take on? If and when Little Fish learns to read, when she reads a story to her big sister, who will be the carer then? Will it be Little Fish, entertaining her poor sister? Or will it be Mog, patiently listening to her little sister and refraining from kicking her when she stumbles over the words? Or will that be a normal sister:sister thing? When Little Fish puts Mog's music on, is she being a carer? Or a sister? Or using Mog as an excuse to play her own choice of music?

I'm not sure it's possible to separate out "care" from "living". We live our life, and a large part of that can revolve around Mog's care and nursing needs. To exclude Little Fish from those areas of Mog's life would be to shut her away from her sister, not good for either girl. But at the same time, to place expectations on Little Fish that she will always be responsible for doing these things for her sister would be unfair to both girls too.

I remember, as a young child, changing my baby brother's nappies. I don't ever remember being told to do it, but I remember offering and being allowed to help. As an older child, I remember babysitting my younger brothers. Did that make me into their carer, childminder, nanny? Or just their big sister? Why is that different if the less able child is less able due to disability, rather than age?

I also remember asking not to be the boys' after school sitter any more, as I didn't want the responsibility. And I remember that request being honoured by my parents. I think maybe that's the key - I could do it, I was capable of doing it, I knew how to keep the boys safe and what to cook for tea, but I didn't actually have to do that on a regular basis unless I chose to do so. Perhaps that's the same for the siblings in this scenario - if your brother or sister has epilepsy, once you are old enough to know what to do, you should probably know where the emergency medications are kept and how to call the ambulance, but you possibly shouldn't be placed in a situation where you might have to do so, unless you are happy to have that responsibility?

I do know this, that shutting the non-disabled child out, not talking about things in front of them, not including them in the disabled child's life, does not protect the child from worries and concerns about their brother or sister. Children are not stupid, they will pick up on the thoughts and feelings of the adults around them. Including the child, all the children, may mean having some painful conversations. But the conversations are important.


Meanwhile, and on an entirely different note, take one cat with a sore head. Add this collar:
And end up with this:
One even sorer head where the cat has repeatedly cannoned into every piece of furniture in the house, in reverse, until successfully wedging his head between two chair legs in order to force the collar back off over his head, neatly removing the scab as he did so. Trying again will result in a larger wound in an even shorter time, and trying again will result in the cat vomiting in fear before taking off up the curtains.

Meanwhile that caring little sister will be convinced that you are torturing the cat (and to be fair, she was probably right), and will chase you around the house as you chase the cat, sobbing "No Mummy NO do that" and grabbing your legs to stop you moving at all.

The steroids have worn off, and Goway is stressed and itchy. We took him back to the vet tonight, to learn that on top of the asthma and excema, he now has a heart condition too. A big steroid injection to help with the itching, a big antibiotic injection to help with the weeping crustiness the scratching has caused, a large collar which the cat will refuse to wear, and the threat promise of new heart pills once the cat has recovered from the indignity of all the injections.

I just hope this lot works.
Tia

Saturday, 14 February 2009

A Day in my Life

It's the 14th again, and so Jenny is kindly hosting A Day in my Life again. Many thanks.

We had a bit of a Groundhog Morning here; for a good hour or so my life consisted of wash hands, suction child, wash hands again, deal with incontinence, get half way through before washing hands again to suction child, return to incontinence issue to discover the need to start again there, get nearly cleaned up before having to suction again - two bottoms and one cough and just not enough hands. I calculated that I washed my hands at least 15 times that hour, and added in another 5 missed handwashes too. I think I have some intact skin somewhere, but I think it's reached the elbows.

Things did calm down after that, and I celebrated my reprieve from the endless handwash/child juggling routine with a nice solo bath. Bliss.

And then it was a beautiful Saturday morning, far too nice to stay in. So we blanketed up and set off into town.
It's a strange sight now.
Empty windows, closed doors. Here is where we used to find socks and lightbulbs, batteries and notebooks, vests and screws and felt tip pens. Growing up, here is where my wonderful little kilts with sewn in polyester vest came from - I did love those. And I can still remember the frustration of having put the jumper on first, and having to strip to get the vest and kilt properly in place. So pleased Ladybird will continue even if Woollies is no more.

Walking down through the precinct one defunct travel agents, one dead shoe shop, one closed children's clothing shop; every third shop either To Let or boarded up.

Down to the market square where one young man was valiantly trying to prove that the world could not be fixed or healed until every sinner has repented.
Round to the one remaining children's clothing shop, a quick dive in and out and two happy girls. Back towards the town centre,
And then on to Waitrose via the post box.
A nice mouthful of rare steak, courtesy of Waitrose Saturday tastings, and a brief meeting with Grannie and Grandad, also shopping, much to Little Fish's surprise.

And then a brisk walk home. We are thankful for these.
Newly created ramps, which mean we no longer need to use this one
to get back to our house. Now if the council would just fix the fence here
it might save our lawn from total destruction.

Home then, and a bit of a sulk about swapping out of the power chair into the manual.
Closesly supervised by one very sore cat.
It's good that he's got more energy. But scalping himself really isn't the best use of it. Perhaps he really is allergic to cat fur, and is trying to remove it all? I feel another trip to the vet coming along; I have piriton to give him, but he coughs and hisses and spits, and the stress of having to take the tablets causes him to scratch even harder - not really the plan.

Lunch, and then time for a break. I took the computer, Mog chose the music, Little Fish took the camera.
I think she's improving.

I also think I need to lose weight.

Little Fish evidently felt the need to prove that our floor is occasionally visible.
And that we had been using this far too much this morning.
And then it was time to play with our latest purchases.
LF loves puzzles. That's not true; LF loves getting other people to do her puzzles. She can do the very basic "put this piece of wood into that wood shaped hole" type puzzle, but the more complicated jigsaw style ones leave her confused and cross. So when she spotted this one earlier I thought it might be a good halfway puzzle.

I was wrong.

How can a child who can count her way up to 21 and back (the number of scoops of powder we use to mix up Mog's feed), who can add 2 girls and 1 mummy to get 3 peoples, who can add 2 boys to get 5 peoples, who can prime the feed pump and set it going, build a tower, and whitter on for hours effectively communicate her thought processes, be so totally unable to put one shape next to another shape and match them up? She used to be good at this (for her age); and now she seems to have stagnated.

Hey ho, another set of puzzle pieces to pass over to anyone foolish enough to sit down next to it.

Meanwhile, I think it's safe to say that Mog approves of the socks we found for her Hensinger.
And then it was teatime, and "I sit on your lap and you feed me tonight, please precious Mummy?", and Upsy Daisy Yoghurt time, and sit on the potty time, and have a super long phonecall with a friend time, and then bedtime for small people.

And now Comeback is prowling around my ankles mewing for his medication, two girls are sleeping sweetly, Julian Lloyd Webber has just finished playing a 'Cello medley to us all, Goway has vanished into a tight corner somewhere, and it is time I found my own bed too.

And that's A Day in my Life for this month.
Tia

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