Packing, packing, packing

I am shoehorning everything I can into our van. At the moment the mountains of necessities are all piled up in our kitchen and down the hallway to the front door. I haven't even begun to pack clothes yes.

Mog is quiet but seems ok. Little Fish is coughing merrily but since she always coughs her way through breakfast I'm not too worried. I slept really really well last night, with the result that this morning I am tired and not really in the mood to do anything at all.

Once we hit the road I'll find my motivation I am sure. Meanwhile I must keep on pack pack packing.

See you next week.
Tia

History is NOT going to repeat itself

Tomorrow we are off to Devon. So I suppose it is only to be expected that Mog has been awake and miserable all night. This morning quiet, floppy, withdrawn, unhappy and uncomfortable. Doctor's appointment this evening. My guess - urine infection. Doctor's assessment - chest infection. Here we go again...

So, off to Devon.
My packing - swimming things, clean clothes, a pile of books to read, food.
Little Fish's packing - swimming things, clean clothes, pads, two wheelchairs, one ventilator, big box of toys, feeding supplies, small pack of medications.
Mog's packing - swimming things (or possibly not now), clean clothes, pads, spare wheelchair covers, one wheelchair, one bath chair, nebulizer, suction machine, SATs monitor, feed pump, formula, syringes, spare bedding, body brace for sleeping in, wedge to sleep on, box of medications larger than the bag of clothing.

I drive a seven seater minibus for the three of us. I think I need a bigger vehicle!

Last time Mog had a chest infection we ended up being transferred from one hospital to another in the wee small hours. This is not an experience I wish to repeat. Last time we went to the Devon holiday cottage we ended up landing in hospital in the wee small hours of January 1st. This is also not an experience I wish to repeat. Perhaps it would be wiser simply to stay home. We won't be doing that. Whilst I have cancelled holidays for illness related reasons - Mog, Little Fish and I were due to be taking a boat trip the week Goldy died, I have made tentative and firm plans to visit friends and then had to cancel - I will only do this if the ill child is in hospital or at the point of admission.

My girls both have life limiting conditions. This does not mean, as some think, that they have conditions which limit what they can do with their lives; this means instead they have conditions which are extremely likely to limit the length of their life span. Neither girl is expected to live long into adulthood. One of these days, one of the many infections Mog catches, or one of her seizures, or something as yet unknown to us, will snatch her from this life and lead her into the next. She is unlikely to outlive me.

Living with that knowledge is something which different families do in different ways. We each deal with it in different ways, in the way which best meets our needs and the needs of our children. By explaining how we live, I don't mean to be criticising any family who makes different choices.

We could extend Mog's life by never allowing her to take risks. I could keep her home from school, keep her away from other children, take her into hospital at the first hint of an illness. For some children that is the right thing to do; for some children that is the only thing to do. For Mog it is an option, but not one we choose to take. Mog loves school. She loves to be a part of everything that happens there. We compromise - when she is having a bad patch, she does not attend full-time. When she is there all day long, the school staff ensure there is somewhere quiet for her to nap if she needs.

Mog's seizures are also dangerous to her. However the only way in which we can keep her from having them is to keep her unconscious. That would potentially extend her life, but at what cost? So we compromise again - she has enough medication to remove the worst of the seizures, emergency medication to deal with some of the more severe seizures which remain, and lives her life through an intermittent hail of other seizures and electrical storms.

Mog's chest infections at the moment are not usually serious enough to require oxygen. We have everything but oxygen available to us at home. We also have a SATs monitor, so I can be sure I will know if oxygen becomes necessary. We could stay at home, where we are close to the hospital, where we could very quickly get help if needed. But we don't yet know how serious this chest infection will be. If we do that, if I cancel this holiday, then this chest infection has suddenly become more serious. Whether or not it develops into a more acute illness, it has had a serious effect on Mog's quality of life. So I won't cancel. We will still go. When I have finished writing this I will look up details of the nearest Dr's surgery and out of hours clinic. I have a map showing all the relevant hospitals between here and Devon; it was drawn up by the medical staff at the general hospital when we left on January 1st last year so that we could get home safely. I'm a GirlGuide; I believe in Being Prepared. But I don't believe in taking unnecessary precautions. I would far rather Mog had a short, rich life than a longer, duller one. One thing which comforts me through the loss of Goldy is the knowledge that she had a good, rich life with us; that whilst she was with us she lived life to the full, to the best of her ability. I'd like to look back on Mog and Little Fish's time with us and know that the same is true for them.

So, unless Mog becomes seriously unwell overnight we will definitely be off to Devon in the morning. No internet access where we are staying, so you can expect silence from me until January 2nd. Enjoy the peace!

Wishing you all a fruitful 2008,
Tia

Happy Boxing Day

Our Boxing Day started unexpectedly appropriately, with the delivery of a couple of large boxes. Dad brought round all our presents which we had left with my parents last night. Very kind. My brother spent the better part of four hours here this afternoon trying to sort out my wireless internet connection. Unsuccessfully.

Tomorrow we have a Counting, Stella Gibbons style. Then I must pack for our trip to Devon. Last year we spent New Year's Eve in hospital. Amazingly, the people who we went on holiday with were still willing to come on holiday with us again in the summer. Where, oddly enough, we ended up spending the better part of a night waiting in hospital due to a packing error on my part (forgot to pack one of the medications). The last couple of times I've been away overnight have also been hospital related. I'd really like it if this holiday, this start to 2008, could be hospital free please.

Mind you last years' was entertaining. A cottage on a farm in rural Devon. Several families, all friends, all staying in the row of cottages, all joining together in the largest cottage to see in the New Year. Goldy, high on the atmosphere and her pizza. Mog, also high on excitement. And my darling little foster baby (emergency placement). Since Mog's medications send her to sleep within about 20 minutes of taking them, I delayed giving them for as long as possible. Meanwhile, darling little baby (DLB) was being admired all round. Until the admiration turned into concern, "Tia, does he have seizures? Because I think he's fitting". One by one we gathered around him and watched. In case this sounds needlessly laid back, we were all mothers of children with disabilities, and all very used to watching children fit. However, DLB had not previously had seizures, although he did have a variety of conditions all likely to cause them.

So, time for an ambulance. Abandoning Mog and Goldy to the party, I took DLB back to our slightly quieter cottage, whilst other adults strung themselves out along the farm and back to the main road to direct the ambulance. Great was our confusion when, instead of the expected ambulance, we observed a 40foot fire engine arriving, sirens blazing. Great was our concern and amusement - about 50:50 - as we watched it bottom out on the farm track. From this behemoth out jumped half a dozen burly firemen, all of whom converged on my little tiny baby. We tried to explain that he was fitting, not on fire, and they in turn explained that they were the First Responders; first aid trained and designed to reassure whilst the ambulance wended its way from the nearest town.

DLB had by this time stopped fitting, so they gave him some oxygen and ran a set of obs on him. It was at this time that Mog started fitting, over in the main cottage. She arrived, twitching still, at our cottage, at the same time as the ambulance and paramedic. It took a little convincing that their patient was the little baby grinning at them, and not the obviously disabled little girl twitching in the corner. However Mog's seizure did not stop, I gave her her emergency medications, trying to beat the paramedics off with a stick, and it was finally decided to take both of them into hospital for further observation. Some dear friends agreed to stay with Goldy, who was still enjoying the party and having the time of her life.

It took an hour to get to hospital, so I had the pleasure of hearing the New Year in as we drove through a town with all the church bells ringing. Very peaceful, very beautiful, just two slightly twitchy children to spoil it.

Once at the hospital it was decided to run a few checks on DLB. He did have a few more seizures whilst being watched, and was started on an anticonvulsant. Mog took the opportunity to sleep her earlier seizure off, and I tried to drowse off a little on a hard plastic chair.

We were released in the morning and a friend came to rescue us, our holiday then ended early as we had an emergency appointment with DLB's neurosurgeon, and I had in any case decided I would prefer to be at home, where I am just ten minutes from a hospital, rather than out in the wilds. Driving home after minimal sleep was an interesting experience...

Now I'm in touch with DLB's new family and I know he's spent several weeks in hospital recently, so he may well be spending the New Year back on the ward. Mog however has clear instructions she is not to pull anything like that this time. I keep telling her, she keeps laughing at me, but she'd better believe I am serious. There's plenty of potential for Little Fish to have sudden problems too, but if I worried too much about that we'd never go anywhere. At least we'll be in a nice warm cottage, not in a tent. I like camping, but not in December, not with children at any rate.

Stay well yourselves,
Tia

Peace to you

My mother will be here shortly to help me with the girls. Then we'll be off to church for a service designed to meet the needs of the younger element of the congregation, a competition to see who woke up first, lots of lively music, Vicar and Curate moving between church and church hall (no room for us all to worship together on this morning when the congregation doubles up), and somehow, somewhere in the middle of the short service, a few moments of reflection on the miracles of Christmas and Easter. After which, we will be spending the day with my parents, where wildly overexcited cousins high on chocolate and too little sleep will compete with wildly overexcited grandparents high on the joy of watching grandchildren open presents, we will eat too much and think about going for a walk but probably decide not to (it is raining a cold grey rain this morning), we will spend the afternoon opening presents and eating nuts and chocolate, and then we will come home and roll the girls into bed.

But just for the moment, there is peace in the house. Mog is listening to the radio, Little Fish is still sleeping sweetly. This is possibly the last year we can get away without having stockings; I'm sure that by next Christmas Little Fish will have been indoctrinated into the cult of Father Christmas by her playmates and teachers. For now though, I know that when I go into her she'll say "Hiya Mummy" and want to be taken straight to Mog to give her a morning kiss. She'll be excited to see Grannie and Grandad, she'll love watching the other children jump around at church, and she'll be quite happy ripping wrapping paper to shreds when we get around to opening presents.

So whilst there is peace in the house I'll be sparing a thought for others spending the day in ways they hadn't planned. For my great aunt, recovering from unpleasant surgery in hospital. For my friend, visiting her daughter ill in hospital and faced with the unbearable dilemma which comes from having one child seriously ill in hospital and other children, both well and ill, needing her to be at home. For another friend, faced with the prospect of being cut off by the phone company and left alone with a sick child and no means of contacting the outside world. For those of us (and there seem to have been a lot of us this year) who have lost a child or a parent and are facing our first Christmas without them. For the children living upstairs who were sent to bed in a fury last night and greeted by curse words this morning. For families separated, torn apart.

Two thousand years since the birth of Christ and still we live in a broken, suffering, world. Rachel is still weeping for her children. Two thousand years and perhaps not much has changed. But, two thousand years ago Hope entered the world and changed the rules. In one small corner of the world the King of Kings was born in a barn (did this entitle him to leave doors open for the rest of his life, I wonder?). Humbled himself to become completely dependent on imperfect human parents, to suffer the impotence of childhood and the trials of adolescence and then later the ridicule and revulsion of those he came to save. Two thousand years ago He died and defied death and rose again. Two thousand years ago, and we still remember. Two thousand years later, people are still talking about it.

So do take a moment in the madness to think about the reason why we celebrate today.
Happy Birthday
love
Tia

lunch for eleven.

It started well. Thanks to last night's cleaning binge, I had a good set of clear surfaces to work with. I had planned how to squeeze the dining table into the playroom, how to move the girls' chairs from there into the sunroom, what I'd need to cook and when.

And then Bob turned up. Possibly the only builder on the planet to be working on Christmas Eve. OK, they use the sunroom as their workroom, so no chance of moving furniture there. They need to walk through the playroom to get water for the cement, cups of tea, to and from the van. So no chance of having a leisurely meal there either. Rethink. Everyone who is coming for lunch is staying with my parents, should we cook the meal and then bring it to them and eat there? Excellent thought, except that Mog's birth family were planning to collect her from here at some point around lunchtime, dropping her back again some time later on. So, we needed to be here.

No problem, the cleaner has also arrived and together we move furniture around in the sitting room (I'm aware listing all these rooms makes it sound as though we live in a palace, we really don't!) to make space for the table there. Judicious moving of the piano stool means two people can share it, if one of them is a small child, which means we now officially have enough seating for everyone. Excellent.

Right, onto cooking. Lasagne sauce mulls beautifully. I have garlic and butter for the garlic bread, I have salad in the fridge. It's time to layer the lasagne and at this point I realise I have only half a dozen sheets of it, not really enough for eleven of us. I call home, and ten minutes later my baby brother turns up with a big box of it. Marvellous. Lasagne is in the oven, garlic bread all prepared, and I ask my brother to double check we have enough icecream in the freezer. He informs me we have barely half a tub. Ooops.

No problem, I still have those sixteen boxes of apple sauce, we make Swedish Apple Charlotte to eke out the icecream. Family arrives, we chat, we eat nuts, we have the meal. It is as I am removing the "barely half a tub" of icecream from the freezer that I discover the second, larger, tub which was apparently invisible to my brother. Oh well. Apple Charlotte is always nice.

Next mission is to keep my Grandmother and Great Aunt out of the kitchen as we clear up. They are on a competitive tidying binge, which would be lovely except that they are both now very slow. So we keep them occupied pouring coffee and do a lightning fast loading of the dishwasher instead.

A good day, probably very boring to read about. We are now all ready for tomorrow; Little Fish is fast asleep, Mog is in pyjamas sitting opposite me and grinning, the house is tidy once more and Mum is coming over in the morning to help me get the girls ready for Church.

I just figured out why it feels odd to be sitting here at this time of the evening with nothing left to do to get ready for tomorrow, even though our day tomorrow will be spent at my parents' house. The reason is of course that normally at this point in the evening I am getting myself ready for the drive to Goldy's Grandparents, to collect her from their Christmas (on the 24th) and bring her home to fall into bed before celebrating our Christmas all over again in the morning. I'm sure you're celebrating anyway, Goldy, but it isn't the same without you here.
Tia

Look well to the ways of your household.

There's an irony here.

Firstly, thank you to Cheryl, Copperswife, who always uses that line to sign off her blog posts. I have been reading her blog, reading back through the archives, absorbing her housekeeperly wisdom, and ignoring the piles of laundry, scattered toys, stacks of boxes, etc., in order to do so. Read a page of posts, think "oo, that's a good idea, must get organised, hmmmm try not to do too much in any one day but get certain things done each day", "ooo home made baking mix, what a handy idea", "ooo what a beautiful garden and what a wonderful relationship with her adult children". Then think "hmmm, better go and unload the dishwasher/change the washing over/pick up the debris from Little Fish and Niece's sticker frenzy earlier in the day". And find my fingers sending the mouse to "next five" rather than to shut down. Just five more posts, five more, five more. And as I did so, the more I read the more I found my eyes wandering from the monitor to the surroundings. Is computer time really the priority at the moment? No, but just one more next five, just one more month's posts, just a little bit more...

Over and over again "God bless you as you look well to the ways of your household. Proverbs 31.27. " Proverbs 31.27 in my NIV translation reads "She watches over the affairs of her household and does not eat the bread of idleness". Ouch. Still, just five more posts... Click. Click. Click. And then suddenly, ping, yeeeooowzoop (noise of a piece of electrical equipment shutting itself off), and my internet connection is no more. Deciding to take this as a Divine message, I shut down the laptop and cleaned up the worst of the child-related debris.

Waking up this morning I was greeted with the sight of a lovely clean kitchen, which is handy, as I'm cooking lunch for eleven today and it's going to be a lot easier with work surfaces and floorspace to work with.

Not being a wife, I tend to skip over the end bit of Proverbs. I'm still a Mother and a Housekeeper though; I think I need to review my outlook a little. I do like Proverbs. I was reading Proverbs when I heard that I had been approved as a Foster Parent. My fostering "promise" verses are from Proverbs 9 1-12 (not the whole passage)

"Wisdom has built her house...she has prepared her meat and mixed her wine, she has also set her table...she calls from the highest point of the city, 'Let all who are simple come in here!...The fear of the Lord is the beginning of wisdom, and knowledge of the Holy One is understanding. For through me your days will be many, and years will be added to your life. If you are wise, your wisdom will reward you."

I need to get back to that I think.
Happy Christmas everyone
Tia

Ten Minutes

It took about ten minutes to make the angel outfit last night. It took ten minutes for my sister in law to persuade my niece into it this morning. My niece consented to wear it for ten minutes during the church service, after which she stripped it off and donated the halo to my brother. Who had to wear it for the rest of the service, to the amusement of all who know him.

It was child central round here for a lot longer than ten minutes this afternoon, brother and sister in law having decided to go out for lunch leaving Niece here. She was very happy all the time except for the last ten minutes at which point her imaginary friend Esmerelda apparently decided she needed lots of cuddles with Daddy.

It will take me a lot longer than ten minutes to clean up the mess created by one typically developing toddler; I may think Little Fish can create a mess but at least if I take her out of her wheelchair she's confined to one room at a time.

Tomorrow I'm cooking for the family which means a meal for eleven. It was only yesterday I realised that this could be interesting; I have just four chairs and four stools. I hope people are willing to be very friendly!

And now to round things off neatly, our evening carer has just arrived and informs me it took her ten minutes to defrost her car before she could drive it here.

This post has taken a smidge over ten minutes to write (counting the time taken to top up tube feeds, welcome carer, and so on).

Tia

almost instant angels

First take a piece of fabric wide enough to fit loosely across the child's shoulders and allow them to take steps. This is one piece of shirting fabric, folded lengthwise so the selvedges are together.


Fold the fabric in half widthwise. The centre fold will be the centre of the front and the back. Cut a small piece out of the top folded corner. This will be the neck hole.
This is where the serger comes in handy. Serge the side seams, leaving a gap at the top for the arms. Serge around the neck hole, the bottom and the arm holes. Trim and singe the threads.

Wear over a jumper and a pair of tights, with a tinsel belt and tinsel halo.

I didn't make wings.

Tia

Baked

Today, we baked.

We started with a Cashew Nut Loaf which will form my brothers' Christmas dinner (I do love vegetarians really). First grind your cashews. Actually a very nice recipe which I will remake at some point when Friend visits; interested bloggers will have to wait until then. Sorry.

Next a quick diversion to set the girls up with some instant dinners for the next few days. Chicken and leek with couscous (I'd photograph it but apart from pretty green freckles it remains pretty much the same as these meals here).

Mushroom gravy for the Nut Loaf.

Pause for lunch and an attempt to sit down. This is foiled by Little Fish, who firmly believes that if Mummy is sitting down then she should be on Mummy's lap. Which in itself is also fine, but she's now decided Mummy's face needs to be grasped firmly so that Mummy can see nothing but Little Fisj's eyes. Sweet the first time, infuriating the 6574654th time (and yes, C, I know you've told me a billion times not to exaggerate).

Phone call number one to Family Central; the extended clan is beginning to gather at my parents' house.

Brief escape to the shops as I discover the cream cheese I added to the couscous should have been saved for the cookies. Collect ingredients for Monday's veggie lasagne at the same time, get home and realise we used the last of the garlic in the couscous too. I must pick up some more tomorrow. Or serve lasagne with cheese bread instead. Toasted bread without garlic? It seems all wrong somehow.

Back home and onto the sweet stuff. Thanks to Laura for the inspiration and the recipes. I decided to give the apricot cookies a go - didn't have any apricot jam so used lemon curd, apple butter, and home made fruit jam. Lemon curd was maybe a little runny; it seeped all the way through creating a very sticky soggy bun type thing - messy and delicious. The jam and the butter worked nicely though. Treacle crinkles worked extremely well - I didn't bother with the suggested ice water and they seemed to come out quite nicely without it. I may have to try again with the ice water and see what difference it makes, or can anyone tell me? Laura?

Note to self - next time you bake biscuits from someone else's recipes, check quantities. I now have 7 dozen biscuits of different types. Since I am the only person capable of eating biscuits in this house, this could prove challenging! It's a tough job, but someone's got to do it.

Deputation from Family Central arrived halfway through the messiest part of the baking and helped us out. Phonecall numbers 2 and 3 from remaining members of the Family Central household.

Little Fish likes to help bake. She's quite good at creaming butter and sugar, and thankfully at the moment has not twigged to the fact that this is something which tastes rather nice. Instead she is deeply suspicious of any efforts on my part to sample the uncooked dough. Aren't I supposed to be the responsible one warning her about the dangers of raw egg? It's a good job one of us is sensible anyway. LF would also quite like to help get the trays in and out of the oven, and as soon as the oven is switched on, my job becomes more complicated, guarding the door and the controls with one leg whilst balancing mixing bowl on the opposite hip, and fending LF off with a gentle push, which sends her wheels spinning to the other side of the kitchen. Mog assists by kicking whenever LF passes, occasionally managing to trap her foot in the wheel spokes.

Phone calls 4 and 5 from Family Central come as I am loading the dishwasher for the third time in one day. Two phone calls from two different people, in the same house, telling me the same bit of information, namely that Niece would indeed like to be an angel at the carol service tomorrow.
Excuse me, I must go. There's an angel costume needing to be made.
Tia

Crashing out

moar funny pictures

Sweet dreams
Tia

Chocolate Truffles

More chocolatey goodness. No Toblerones involved this time though. Sorry. Suitable for vegetarians depending on what cake you use. Not suitable for vegans. Sorry again. My mother's recipe.

You will need
4oz butter
4 oz caster sugar
few drops almond essence
6 oz ground almonds
4 tbsps cocoa powder
4 oz cake crumbs (any type of cake, dryer the better but not mouldy! I like to grate two day old madeira cake; it makes nice fine crumbs. Chocolate fudge cake adds to the intensity of the flavour but it's a little harder to crumble)
liquor or orange juice to taste (Mum uses rum, I use Cointreau, the orange juice version is very tasty too but lacks the kick. You could probably use rum flavouring if you liked)
chocolate vermicelli
petit fours cases (teeny tiny paper cake cases).

Cream the butter and sugar until light and fluffy (mix it together until it's pale yellow and soft. You definitely want to have left the butter out of the fridge for a while before doing this). Add almond essence, ground almonds, and cocoa and beat thoroughly. Add the cake crumbs and mix to form a stiff paste. You may need to add more crumbs (or almonds) if it seems too moist. It will definitely seem too moist if you use a gateaux style cake. Add liquor or orange juice - a couple of teaspoonsfull is usually plenty. But mix it, taste it, add more if you like. Knead the dough well until it is all smooth. If it is very soft and your hands are very warm, stick it in the 'fridge for a few minutes to let it cool down. Just long enough to drink a cup of coffee and find the vermicelli and realise you have just half a packet which won't be enough.

In a separate bowl, pour out the vermicelli/sprinkles. I ran out, so switched to grated chocolate halfway through which worked equally well if not better. Definitely messier to prepare though. Especially if, like me, you leave the bowl of grated chocolate standing on the bit of work surface above the dishwasher whilst the dishwasher runs through the drying cycle. If you do do that, don't panic, grab a teaspoon and eat the melted chocolate before doing anything else, then pass the bowl over to your daughter to lick set that dish aside and grate more chocolate into a new bowl.

Now take that kneaded dough, pinch small lumps off, and roll them into balls. Nothing larger than an inch; this is seriously rich. Take each ball and roll it around in the vermicelli or grated chocolate until well coated. Then put it into a petit fours case. You can't see it very well here because I couldn't get the angles right, but these cases have lovely foil outsides; green and gold and red and silver. Very Christmassy.
Refrigerate until needed, then put on a plate with my mother's stuffed dates, Flake logs, and if any toddlers present, peppermint creams with suspicious streaks all over them.

Or eat them put them into old plastic cartons from chinese takeaways nice decorative dishes, wrap them up and pass them out as edible Christmas presents.
Tia

An apology to the chocolate loving vegetarians

I'd like to apologise. My Statcounter informs me that several of you have found your way onto this blog by asking Google if Toblerone is suitable for vegetarians. My veggie friend assures me that it is in fact suitable for vegetarians, but not for vegans. It does contain dairy products. And egg. That's not why I'm apologising though; my apology is for the fact that the page you were taken to was my post entitled "Not suitable for vegetarians". Vegetarians, do not click on that link. You have been warned! So, for those of you who turned up hoping for innocent information about chocolate, and who ended up with a graphically carnivorous posting, I am sorry. I hope the experience hasn't scarred you. Do feel free to take a look at my Toblerone Brownies if you like though - these definitely are suitable for vegetarians. And anyone who likes chocolate. A much safer post altogether. Unless you are dieting.

Tia

EDIT - Lauren has given more info on Toblerone in the comments, check it out if you need to know about whether it is Kosher, vegetarian, or anything. Oh and feel free to contact her with other chocolate-related queries; it's a subject close to her heart (and mine!)

The kindness of strangers (and friends).

It's a birthday; someone should have presents. Someone, two someones actually, will. Our Community Children's Nurse called in yesterday. She brought a beautiful card signed by all our nurses, congratulating us on Little Fish's adoption. And she brought a saggy baggy bundle tucked under her arm. That bundle contained this for Little Fish.

And this for Mog.

These have been made by persons unknown, and given to the community nursing team to pass on to sick children who would appreciate them. Isn't that lovely? They're a good lap size, just right for chilly mornings . Mog is sitting wrapped up in hers at the moment.

Something which makes them extra special to me is this
This is a larger quilt a friend made for Goldy a few years ago. It lived on Goldy's bed. She slept under it in the summer, under it and a duvet in the winter, she snuggled under it when she was poorly. It moved out with her and was her nightly companion in her new house. And on Monday it came back to me. I think the other ones could have been made as companion quilts to it.

And here's a picture of Mog's new wall
Also here thanks to the kindness of a friend. Who gave her time willingly and unstintingly to prepare the room and then decorate it. Mog is sitting upright now taking a closer look; she really likes it.

Our lives are richer thanks to the kindness of strangers and friends.
Tia

Happy Birthday Goldy

If you were here with me today then we would start the day with sausages and baked beans and fried eggs, porridge and golden syrup, and a big cup of coffee to send you off to college in a good mood. Of course, if you were still alive, you'd be living in your new home; but I would have given them instructions to cook you a special breakfast.

You would go off to college, snuggled in your fluffy furry blanket, your hands dancing and your eyes bright. The bus escort would take charge of a large cake tin, full of fudgy gooey chocolate cake, or a baked cheesecake with chocolate sauce.

Everyone at college would sing to you, there would be candles for you to blow out all day long. Your companion on the bus would complain that you were noisy, but secretly enjoy laughing with you. The cooks would make cheese and potato pie as a special treat for you, assuming there wasn't already a Christmas Party in which case you'd have more sausages, crisps, chocolate biscuits.

If you had been at home, we would have ordered in a pizza and finished up with ice cream. If you had been at your new home, we would either have visited you there bringing pizza, or kidnapped you for the evening and brought you back here to celebrate. I wonder which you would have preferred?

Instead you are at Home now. And I'm sure you're having a wonderful day.

I remember when I first me you, you asked me to "sing a rainbow" and then "horsy, horsy". We went in the garden, we went for a walk. I remember those early visits, before you moved in, and the day you cried when it was time to go back to the children's home. How happy you were when you moved in for good.

You named your new wheelchair "whizzy wheelie" which earned us some strange looks when you said it fast. Painting your bedroom, getting to know your other family members, holidays with you here and overseas. Our celebrations when the court decided you should stay with me for the rest of your childhood. Camping; nights in the campervan with you enjoying the echoes and me trying to sleep. Nights in the tent and your excitement when the wind blew and the rain fell. Nights in caravans, cottages, hotels; your excitement at being away and your pleasure to be home again.

Today what I will remember is your ability to spread a piece of chocolate cake across your whole body and the entire room. I may give some to Little Fish, to continue the tradition in your name. I think you would have enjoyed helping her to create chaos, and you would both enjoy the hoover as I cleared it up later on.

Happy Birthday sweetheart.
Tia

Going through the motions

This post was supposed to be about chocolate truffles, brandy butter and a cashew and mushroom loaf. But life got in the way, and I ran out of motivation. Get up, get girls up, get girl one to school, girl two into the bus, get medical supplies, get shopping, get home. Encourage builders whilst seething inside about the fact that they still haven't finished and won't now finish before that mythical date "the spring". Unload shopping, run out of energy before putting it all away. Feed girl number two, ride the big red bus into town to pick up forgotten supplies, come home again. Receive girl number one off her bus, feed both girls, praise the builders for their progress, wave them off, put the girls to bed. Lather, rinse, repeat.

There's a party at school tomorrow. Father Christmas is coming, the girls could go for Christmas Dinner. Mog will enjoy it. Little Fish will miss it - I would have to accompany her and the diary is full for tomorrow. It's Goldy's birthday - she would have been 19. I was hoping to have the day to myself. Instead we will have builders, cleaner, Goldy's grandparents are coming down to collect some equipment and need directions to the cemetery, other relatives may want to talk, I have photos to collect; time to reflect has been crowded out by the mundane. Perhaps this is a good thing; I'm not sure. What I do know is that the world doesn't just stop for my convenience. I wouldn't mind a bit of a pause though.

I don't know if I am more concerned that people will know it is Goldy's birthday or that they won't. Her birthday has always been drowned in Christmas parties. Last year we celebrated twice, once two months early in Disney World, and once with a Christmas party at the children's hospice. The hospice she wasn't entitled to attend, because she had average life expectancy.

I always sent a cake into school or college with her; usually a cheesecake since most of her classmates couldn't chew. This year I found the perfect little gifts for her to give her classmates back in July, ordered them and they've been sitting in a box ever since. Mog and Little Fish took them to nursery instead. Goldy would have loved them - little tiny LED candles which could be switched on and off by blowing. One of Goldy's favourite songs was about blowing candles out - not Happy Birthday although she did like that one too.

Goldy never minded sharing her birthday with Christmas; as far as she was concerned the whole thing was one whole long birthday celebration. Every Christmas party had Happy Birthday sung - people used to think she was being very religious; she wasn't, she was singing it to herself. She didn't care about presents or possessions; she did care that there was chocolate cake and pizza and ice cream and a crowd of people to sing with her. Gifts were instantly tested for edibility, and then for their noise making capacity. Points for anything which made a noise when it was squeezed around the middle; treble points for anything which was a duplicate of one of her existing favourite toys. And I do mean duplicate, no variations allowed.

There's a lot of joy for this Christmas. Our first Christmas with Little Fish. I'm going to be an aunt again in the New Year, and the bump will be visiting (together with the bump's host). My cousins have just had their first baby. A friend has adopted. And let's not forget the birth of Jesus, heavenly hosts singing Alleluia, shepherds leaving their sheep, a man and a woman wondering Who they had brought into the world. Right now I'm identifying with the other mothers in Bethlehem though; the ones who didn't manage to escape to Egypt. Herod visited here this year.

Presents have been bought. Some have been given. Others are lying, wrapped or unwrapped, around the house. Cooking needs to be done. Elderly relatives need to be collected. The girls will be angels again for the carol service on Sunday, will enjoy the Christingle service on Christmas Eve.

And I won't be travelling late at night on Christmas Eve fetching Goldy from her Grandparents to come and spend Christmas with us. I won't be their "lucky guest"; their first visitor, being plied with food so that I don't steal the Christmas Spirit and take it with me when I leave. I won't be racing home along deserted motorways, listening to the Christmas Eve radio programmes, trying to be home in time to free up my parents to get to the midnight communion service. I won't be rolling Goldy out of her wheelchair and into bed, tucking her up and then throwing her Christmas clothes onto a short wash and dry cycle so that she can wear them again for her second Christmas in two days.

I know, I KNOW that she will be having an absolutely Heavenly birthday and Christmas. But I'd far rather have her here, stealing the carrots and sprouts off my plate, tipping gravy into her lap, shrieking so loudly she was in danger of being wrapped up and posted out into the garden, getting as high as a kite on chocolates and blowing out the advent candle.

So, no truffles today.
Tia

It pays to be organised

Or so I've always been told. Quite how much it pays, I've never quite managed to find out. Take today. I woke, refreshed and ready for the day, at 6AM. When our carer arrived at 7 I nipped out to Budgen's to grab some flowers for the girls' school staff (end of term gifts; I think they get enough chocolates and biscuits and 'fridge magnets so I give them something that'll be pretty for a few days and not clutter the house forever). I also managed to remember tea bags and sugar for Bob and co, and some butter for Christmas cooking. Yay me.

I then got home, raced the flowers into bags, threw some little bags together out of gold wallpaper and stuffed them with chocolate and LED candles for the girls' classmates. Woke up Little Fish, threw her into some clothes and threw some breakfast into her, and even managed to remember to wrap the biscuit tin for the bus drivers.

Phew, 9AM and I've done a full day's work. I then discover the consent form lying on the counter waiting for me to post. The post office is inside Budgen's. So when Little Fish gets back from nursery we head to Budgen's, post the letter, and pick up bread and a couple of other things I had forgotten.

Little Fish eats a quick lunch and I enjoy the bread, and then it's off to nursery for a Christmas Party. Hurrah. As I sip my mulled cranberry juice I realise that I have fogotten to buy Gaviscon twice so far today. We call back in to Budgen's on the way home.

Getting Little Fish out of the bus I realise she is a little soggy. This reminds me what else I needed to buy - nappies. I am not going back to Budgen's tonight!
Tia

Mother

Today I signed a consent form. A medical consent form. The laws surrounding consent are a bit complicated; as a fostercarer I am able to sign consent forms for anything relating to school, for permission to take photographs, for emergency medical treatment, but not for elective medical treatment. I can agree to a child having the 'flu vaccination or MMR but not holiday jabs. I can agree to alter doses of anticonvulsants, but I cannot give permission for a child to stop all medicines against the wishes of their doctor. I can consent to an emergency appendectomy, but not to a routine tonsillectomy.

Today I signed the consent form that will enable the surgeons to go ahead and give Little Fish a Percutaneous Endoscopic Gastrostomy tube (PEG for short). This is a tube straight through the skin into her stomach, through which I can give medicines and all liquids. Since birth, Little Fish has had a Naso Gastric tube ((NG-tube) tube up her nose and down her throat into her stomach). She's very good with it, she pushes it back down herself when it comes out, she holds it in place when the tape works loose, she tucks the dangly end back down her vest when it comes out. But it's supposed to be a short term option.

The surgery has risks for Little Fish; it's quite a minor op but anaesthetics can be dangerous when you require a ventilator to breathe at night. Whilst she has been in fostercare, no one has been willing to sign the consent form on her behalf. When she moved in in February I was able to sign the form as a prospective adoptive parent, but the surgeon was unwilling to accept my signature as I was only a fostercarer. Meanwhile the NG-tube has caused ongoing problems with her ventilator; it pushes the nasal mask out of position and causes it to alarm more often. So we fasten the mask more tightly than we would otherwise need to do, which in turn puts pressure on the NG-tube, which has now caused sores to track up the sides of her nostrils. Nothing major and they will heal, but if left much longer they will scar, and meantime they are uncomfortable. We have to tape the tube to her face, which makes her cheek sore, and she has developed allergies to the three most popular tapes we use for this. So, it's a short term risk (not being able to get off the ventilator) vs long term benefit - less pain, less risk of developing more allergies, less facial scarring, more effective overnight ventilation, and more independence - with a tube into her stomach Little Fish will be able to feed herself, with a tube up her nose Little Fish's arms are not long enough to hold the syringe above her head). It's a risk I am willing to take, and it's a choice I know Little Fish would prefer. There's also the visual aspect of it - a PEG is hidden by clothing, an NG-tube is visible to all, and strangers judge the child by it. It is suprising to me how many people think the NG-tube (a very thin yellow tube up one nostril) is actually providing oxygen to the child! I don't think her medical needs are anything to be ashamed of, they don't need to be hidden for fear of what other people will think. But I do think that she has a right to privacy, and a more discreet tube will give her that.

Which is a long back story to the much shorter story - today I signed the consent form. I gave permission for my daughter to have this future surgery. I decided whether I would consent to tissue samples being used for research purposes, I decided whether or not students could be present for the surgery, and I decided whether or not I would allow blood transfusions to be given if needed. It was all entirely my own decision.

And then, in the very last box, under "relationship to child", I put MOTHER.

I've had children for 8 years now, but this is the first time I have ever been able to put Mother into the little box. I don't need to cross out the parent/guardian box and write fostercarer over the top, I don't need to find a social worker to sign the form for me, I don't need to consult with other family members. I just sign, and write Mother.

A nice start to the day.
Tia

I write like a man

According to Gender Genie, that is. According to Hacker Factor's Gender Guesser I write like a man, unless I am writing formal writings, in which case I write like a Weak Man. Or possibly a European Male. Humph. According to the notes accompanying the analysis, men should not be offended if the results reveal they "write like a girl". Am I supposed to be complimented then, that I write like a man?

I wonder what makes my blog style masculine? It cannot possibly be the subject matter, surely?

So, fellow bloggers, test your own entries out (paste at least 500words from recent entries into the Gender Genie/Gender Guesser and see what comes up).

When you've done that, how about heading over to SnapShirts and try out their word cloud. Here's mine.
Pretty, isn't it?
Tia
ps. Why yes, this has indeed been a content-free posting.

You know it's going to be a good morning when

as you are leaving home to go to Church you get a phone call. It's rarely good news. In this case, it was the lady who was supposed to be running creche, bowing out as her daughter had suddenly made it very obvious she had a bad stomach bug. And before you suggest she could have left daughter with her husband, not a possibility; he was preaching. Oh, and to add to the festivities, she apologised for the fact the person due to help her with creche had had to leave the country on urgent business. Person number three on the rota would be coming but would be late. Ever felt set up?

No problem, we marched to church a little faster than usual to be met with a stone cold coffee lounge (where we hold the creche) full of high and unstable piles of chairs. Marvellous; it's a carol service this evening and a lot of extra parishoners were expected. Someone had kindly taken the chairs out of the cold store and left them in the coffee lounge to heat up for tonight. This would have worked better if someone else had not switched the heating off, and better yet if whoever had moved the chairs had considered the fact that the coffee lounge would house a dozen toddlers in the morning. By now I definitely feel set up.

OK, it's 9.03, church begins and 9.30 and children start being dropped off at 9.20. I locate the keys to the toy cupboards, wade through the stacks of chairs and manouvre them into slightly more stable positions. A teenager arrives with two heaters; we plug these in and guard them with chairs. Should stop any child no longer crawling. For some reason the sharp pointy coffee tables which are normally safely stacked along the walls have been placed artistically in the centre of the room together with half a dozen of the less stable chairs. These find their way swiftly over the counter into the kitchenette, where I will later kick them and bark my shins whilst preparing snacks.

In the middle of the furniture shifting our first "crechette" arrives; small girl who speaks no english. Harrassed parent apologises for being early, explains he is leading the service and runs out. At 9.31 precisely we will discover she has a large and smelly nappy (diaper), and no changing bag. I locate a nappy but my bag proves to be devoid of wipes. It's normal policy to fetch a parent to change a child, but in this instance it is not possible. So I find myself, yet again, up to the elbows in poo, only this time it has not come from one of my own children. Lovely. I post the child into the only available nappy, one of Mogs, and tape it up - it comes up somewhere near her armpits. Child coughs and splutters throughout the procedure and generally looks pretty unwell.

Meanwhile thankfully 2nd parent helper has arrived. We are both officially "helpers" only, not leaders, but thankfully she knows where the biscuit tin is kept hidden, and I know how to fill in the register. Our teenage helper arrives, as does another parent, also expecting to stay. This is great news. Until the message comes through; she's actually booked to help with the next group up and has got the weeks wrong. Oops. Still, she ropes in her husband who gamely agrees to stay with us.

We are in luck. Apart from non-english-speaking-snotty-smelly-nappy-girl, we have just nine other children, four of whom belong to the various helpers. This includes no pre-walkers, so the heaters are safe. Unfortunately, it does include the monster creative little individual who is at that trying stage some children go through of lashing out at any child who crosses his path. Or who stands still but is in his path. He only gets three children, and only leaves one bruise.

We have no craft activity and agree that although the official programme states otherwise, we consider this to be a bonus. Ten toddlers and a pot of glue; not the best for me or you. We make snack time last extra long. We sing many many extra verses of Old McDonald - did you know he had dolphins on his farm? They leap. We have two signing children in the creche; unfortunately the two signing Mummies (myself and the 2nd helper, coincidentally the parents of the two signing children, what are the odds?) don't know the sign for dolphins. Never mind.

Finally and thankfully the service ends and we are rescued by the various other parents. I leap over to the next group up to rescue Mog; she has it appears been sitting doing exactly nothing for the hour; I forgot to remind them that she likes to join in. Still, it's over, she joins us back in creche and we scrape the playdough off the carpet. By the time this has been done as well as we can, there is no coffee left next door. Trauma.

I head home via a quick trip to Budgens for milk and bread. As we leave the shop, the bag snaps and my shopping spreads itself across the carpark. Haven't yet decided whether that was divine retribution for shopping on a Sunday or for using a disposeable plastic bag.

The day picked up after that. Just as well really. But if it makes you feel any better, I just spilled Mog's drugs all over her bed instead of pushing them through her G-tube.
Tia

That's Life

I got the coffee. Hurrah. Didn't have to remember to buy it; a friend remembered I was out and brought some round. Now that's service! That or she's she's really scared of how poorly I function without it. I also got the bath. Of course, the bath would have been more relaxed had Bob's message informing me he would not be coming today had been received beforehand, so I didn't need to rush to be dressed before his arrival. But still, a bath in the company of an unread book, without children, not to be sniffed at. Actually, sniff away, it smelt pretty good.

Mog's room is mostly decorated. She is very pleased with it, particularly with this wall. No, that isn't her in the picture and please don't show her the outfit; she doesn't need any more ideas! Of course, in the sales pic for this wall, the room itself is quite a bit larger than Mog's. Somehow the picture looks different when it's pasted across a couple of corners with a giant perspex cot covering the coach and horses. But it was ready for her when she got home from school yesterday, and she loved it so much she refused to come out for tea last night, and only agreed to leave her room this morning after being bribed by the prospect of buying new shoes.

New Shoes. Mog LOVES shoes. Since her hip op, it has been decided that she no longer needs to wear ankle splints. Not because her feet are better, sadly, but because her tone is too high to cope with the splints. The good news as far as Mog is concerned is that this means her shoes (bought to fit over the splints) are all too big. So we have been waiting for a time to buy new ones.

Into town. A wonderful discovery; two new disabled parking spaces right in the centre of town, in the most central, perfect, spot ever. We've had major roadworks through the town centre for the past year or so, these spaces have been added in the last two days and I LIKE them! So, a good start.

Through town and over the road and up to the hole in the wall machine to grab some money. First problem; my card is accepted by the machine but it refuses to give me money. Also refuses to give me information on my balance. Worrying - I know I have money in the account, so has it been emptied by persons unknown? I have £3.27 in my purse, and a checkbook.

On to the shoe shop, where Mog falls in love with a pair of boots. Brown boots with zips at the side, embroidered with red roses and green leaves. They're yummy; I want a pair. They're not cheap - prices are not displayed, but when the shoes come in a tin instead of a cardboard box, you can be reasonably certain you're no longer in bargain city. Happily for Mog, the shoe shop takes cheques, so I pay and we head back to the car.

Home via Argos, for a new blender. Five years of daily use and our old Braun has given up the ghost. Waiting until Christmas isn't really an option; both girls need "whizzed" food and like to eat more than once a month. Argos does not take cheques. I hand over my card, preparing to be embarrassed and apologetic. But it is accepted by the machine and the sale goes through. It is however refused at the food place. Odd.

Getting home I call the number on the back of the card. This gives me two options. The first is irrelevant, the second is for all other enquiries. I hit number two and get the following message "this is a dedicated phone line for problem number one. Please call your local branch". Marvellous. It's a Saturday, the bank is shut, and by now I'm worried that either someone has nipped into my account and stolen all my money, or that the bank has decided that my Christmas shopping is unusual spending and put a hold on transactions. It does specialise in doing this at odd and frustrating times, usually when I'm trying to spend money. Almost never when I am trying to pay money in.

I find another phone number and ring it. I am put on hold. after 14 minutes and 55 seconds a woman answers the phone. In my excitement at reaching a real live human being I accidentally shut off the phone. Rats. No matter; I redial. 17 minutes and 37 seconds later I reach a second real live person. She requests my card number. I begin to read it off, she interrupts me "sorry madam, that is card X. This is a line for cards Y and Z only." Before I can start to cry properly, she offers to transfer me to the number I actually need. I thank her. 2 minutes and 13 seconds later the phone is answered yet again, by a woman who needs bank details not listed on the card. I put the card down and rifle through my handbag to find my chequebook. She gets the information she needs, and then asks for my card number again. Card has, of course, disappeared in my hunt for the account number.

Thankfully, before I am forced to hang up and shoot myself
weep
make plans to withdraw all my money and hide it under the mattress before firebombing the bank hunt for the card and redial, I notice the card. Lying in a puddle of yoghurt on the work surface. Excellent. She runs my details through the computer and decides there is no problem at all, which is annoying, but better than discovering someone has cloned my identity and spent Bob's fee. She will arrange for a new card to be sent out, and in the meantime I can continue to use the old one. More or less.

Right. Lunch. The girls have been fed and watered whilst I have been waiting on hold (multitasking), so I grab something quick for myself and then it's on to finding things to do this afternoon. We need milk, vegetables, bread, and a few other things. So naturally we spend the afternoon listening to music, playing with photographs, and listening to Little Fish discipline her baby dolls. I'll shop on Monday. Maybe.

Bed time.
Tia

An open letter to the nurses we have known

Firstly, and most importantly, thank you for looking after my child when she is unwell.

When my daughter is sick enough to be in hospital, she is usually very sick. The fact that she is always somewhat sick does not make it easier to bear the times when she is very sick. In many ways it makes it harder, since I know that not all children get better all the time. So if I tell you that my daughter is ill, or that I am worried, don't say "she looks alright to me". The signs that she is unwell can be extremely subtle; that's one of the reasons why I stay with her, to interpret for her and for you. Don't assume I ever get used to sitting by her bedside watching her fight for breath.

I do know my way around the hospital, this is true. Please don't assume this means I remember where your linen cupboard is, or that I know how to access the parents' rooms. It was only on the last day I spent on your ward that I realised there was a washing machine available to parents - this is the sort of information it would be useful to tell us when we first arrive. Or at least that second day. Especially if it's an emergency visit.

To the nurse who sat down and figured out a decent workable pain management plan and then made sure it was implemented, thank you. To the nurses working the shifts before this nurse came on board, please consider taking the time to do this yourselves. It only took her ten minutes, and it saved her a lot of time running about checking the charts for the rest of the night. And it kept my daughter out of pain.

I appreciate that there are other children on the ward, and I understand that some of them may be sicker than my daughter. For future reference though, the nurse who said "I'm very sorry but we are really busy at the moment; I should be able to be with you in twenty minutes" left me in a much better mood than the nurse who said "There are ten children here you know". I don't need to be made to feel bad for requesting help with my daughter.

Please don't be offended when I double check the drugs you are giving my daughter. I know you've read the chart; I know you've checked with the other nurse in the room. It is not that I don't trust you personally. It is simply that my daughter has, at times, received the wrong dose of medication. So if something looks different to what I'm used to, I will check that. The response "we use a higher strength solution so the volume is less" is more likely to fill me with confidence than "I've checked it, we don't make mistakes".

I understand that things get very very busy on the ward, and that certain things are beyond your control. I would therefore like to say a particular thank you to the nurse who let me know what time the ward was likely to be at its most quiet, and who suggested that I waited until then to go and find something to eat, because she would then be able to send in an HCA to sit with my daughter. I know things can change suddenly, but knowing that things were likely to be quiet meant that I could relax a little more whilst off the ward.

I did appreciate the short chats we had when things were quieter; thank you to those of you who came to see us and spent a bit of time just generally chatting and trying to bring my stress levels down. That was truly appreciated. However, to the nurse who spent ten minutes ranting about the stupidity of nurses working 12 hour shifts, and how dangerous it was to be working for the final four hours, and how easy it was to make mistakes, I'd just like to ask did it not occur to you that my daughter was being nursed by many staff working 12 or 13 hour shifts? I didn't need to know the research showing how dangerous that was; I needed to be able to have confidence in the staff caring for my child.

To the nurses who allowed me into the recovery room as soon as my daughter was out of theatre, thank you. To the nurse who didn't let me know when my daughter was out of theatre until I asked, and who then did not come and find me when my daughter was ready to return to the ward, do you know how much that upset me? I appreciate that different hospitals have different policies on allowing parents into the recovery wards and that you are not responsible for those policies and can't change them. But you knew where I was, it would not have taken thirty seconds to keep me informed.

To the nurses who put down what you were doing (when it was safe to do so) and came to watch my daughter having seizures, so that you would know what they looked like, thank you. To the nurses who insisted tonic clonic seizures were the only seizures which counted, I suggest you obtain some epilepsy training. Stat.

To the nurses who stayed on hours past the end of your shifts, in order to give full and proper handovers, in order to write notes, in order to change beds and adjust oxygen settings and give meds and speak to doctors, THANK YOU. You shouldn't have had to do that, and I know you do it day after day after day. Thank you.

To the nurses who took the time to get to know my daughter, thank you. To the nurses who spoke directly to my daughter, thank you. To the nurses who listened to me, who asked me to explain treatments to my daughter before carrying them out, and who gave me the time to do so, thank you. To the nurses who did not know how to speak to my daughter but who tried, thank you. I hope my suggestions were useful. To the nurses who marched in, spoke to neither of us, and injected my daughter or rolled her over like a slab of meat, I hope you understood that my anger was directed at your poor practice, and was not simply because I was stressed. I hope you listened to my explanations and realised that my daughter is a human being and needs to be treated with dignity. I suggest some training in learning disabilities. To the nurse who brought in stickers and feathers for my daughter, a very big thank you!

To the nurses who worked with us several days in a row, thank you. To the staff nurse who put different nurses with us every shift "because they all need to learn about complex needs", whilst I appreciate the fact that our experience will benefit other children, please think about the effect this had on us. We had to train new staff, every shift, and that is not a swift process. It meant that I was unable ever to relax knowing that my daughter was being cared for by someone who knew her. To the nurse who realised this was happening, and swapped with one of the new nurses for a few hours, thank you. Similarly, to the nurse who watched me count up all the student doctors, student nurses, student therapists all joining in on a wardround, and who rounded them all up and got them to leave us alone with the doctor for a while, thank you.

I know it isn't your job to keep music playing for my daughter when I am not with her. To the nurses who promised to keep an ear out and hit the play button when the CD finished, thank you. To the nurse who snapped that she didn't know how to use those things, and who refused to enter the room so I could show her which button to press; you left me with the choice of going without food or leaving my daughter unhappy. Why did you think that was acceptable?

To the nurse who took the time to sit down and explain what various things meant, thank you. To the nurse who wasn't working with us but who had heard we were in, and who came to visit on a break, thank you too. To the nurse who made sure the Dr sat down and talked about the implications of certain discoveries, thank you. To the nurse who sat in on the Dr's discussions so you could make sure I had heard things properly, thank you. To the nurse who popped back in again after the ward round to check that I was ok, thank you.

To the nurse who broke all the rules and made me a cup of tea one night; I think you very possibly saved my life.

To the night nurses who sat down and played a game of cards, loudly, at the nursing station - please don't do that again. I am sure a night shift when you only have three patients, when all three patients have parents with them, and when none of the patients is ill, must be boring. But keeping the parents awake with the noise of your game, that doesn't go down too well. I appreciate there is only so much admin which can be done overnight, but perhaps I could recommend some reading for you. Epilepsy awareness perhaps? Or profound and multiple learning disability? Or visual impairment training. Failing that, may I recommend reading magazines and eating chocolates as a quieter occupation?

To the clinic nurses who insist on weighing my daughter before clinics, please request or fundraise for a set of hoist scales. When I state that I do not wish to stand on the scales myself, please respect that. You don't know what reason I may have for not wishing to know my own weight. And having you know my weight and not me, that isn't a solution either! Additionally, although I can at present hold my daughter safely whilst standing on a regular set of scales, the time will come when that is no longer a safe option. I refuse to believe my daughter is the only child you see who cannot sit on a pair of scales herself - please get the correct equipment.

To the clinic nurses who think my child will not need magic (numbing) cream because she doesn't understand what is happening, shame on you. To the nurses who allow me to hold my daughter's arm steady for you and believe me when I say I have done it before and will manage just fine, thank you.

To the clinic and community nurses who tirelessly chase up appointments and treatments, phone between clinics to check progress, spend hours sorting things out for us, cheer when things are going well, send my daughter birthday cards, thank you. You simplify our complex lives.

My daughter is always going to be disabled. I am familiar with her disabilities, and I am the expert in my child. Thank you to those of you who recognise my expertise. Thank you too those of you who realise that a new need, a new diagnosis, is going to upset me as much as it would upset the parent of any other child who hears bad news for the first time. Thank you to those of you who take the time to educate me about the new needs, new concerns, who enable me to remain the expert in my child. Thank you to those who help me to have confidence in my ability to carry out new treatments, live with new risks.

There may well be times when you can't do anything for us. "I'm sorry, there's nothing more I can do at the moment" is a better way of turning us down than "that's just the way it goes sometimes" or "you always knew this was a possibility". Tread softly.

A few tips. Please don't be offended if I forget your name. I'm operating on very little sleep and my daughter is my focus. If you are a student nurse, please tell me you are a student nurse. Unless there are 12 of you in the room all at the same time I'm not likely to object to your presence. And your somewhat naive and occasionally insulting questions will be answered with more sympathy and in a more educational manner if you are open with me about the fact that you are tying to learn things before you qualify. Listening to me explain a complex query about drug interactions and possible seizures and letting me ask it over the course of ten minutes before saying "oh I'm just the student; I'll get one of the nurses to come and see you" is not helpful.

Finally, thank you to those of you who realise that my daughter is my life, she is my daughter.
Thank you to all those of you who realise that although my daughter is very profoundly disabled, she still has a good quality of life. That she does not have a DNR order, and that she does not at this point in time require one. That her doctors and I are in agreement that she is for full and active treatment. To those of you who disagree with this, the person to argue it with is the Dr, not with me, and definitely not in front of my daughter. To those of you who spent time trying to find her smile and watching her melt into a puddle of giggles, thank you.


Tia

Uncaffeinated, uncaffeinated.

I just used the last of our coffee. I can't leave the house to replace it until after lunch. Will I remember then, or will I end up in this situation again?

Tia

Bath Quest

I like baths. No, I love baths. There's something about sliding under a mountain of foam into water that is warm and deep enough to soothe away the aches, smelling gently of something which is entirely unrelated to any kind of bodily fluid. Hmm, bath "milk" isn't dairy, right?

My greatest luxury is a long uninterrupted bath. It's my treat when we stay in hotels, my hardship when we stay in hospitals (showers only), and my top means of relaxation when life gets busy at home.

Trouble is, when life is busy, the time to have a bath vanishes.

As I mentioned, I had planned for a proper bath on Tuesday. Didn't happen. No time on Monday either. Nor yesterday, rushing out to get the girls to school in time for their nativity play. This morning was a possibility; if I could just keep Little Fish in bed a little later then she would be able to eat breakfast whilst I had a bath; not quite the same levels of relaxation but a lot better than nothing.

All good in theory. However Piccadilly Circus had nothing on us this morning. Little Fish up super early. Mog also awake but since she'd been up since 2 I'm not sure whether that counts as an extra early morning or just a cancelled night. Someone painting Mog's bedroom again. Three builders working on our extension. The cleaner. And, as piece de la resistance, the physiotherapist I'd forgotten about.

A busy day, tired children, early into bed. Mog too tired for a shower even. So it was looking positive for tonight. Little Fish's ventilator beeping for an hour, but I have now fixed that. Harder to fix is the fact that Mog, having had an hour's sleep, is now convinced it's time to get up again.

That'll be negative on the bath tonight then.
Humph

Christmas Close up.

Here's our Nativity scene. The figurines belonged to my Great Aunt, an amazing woman who died a couple of years ago. Jesus is in a drawer waiting for Christmas morning. And the third wise man had an unfortunate meeting with my elbow yesterday. Oops. Still, I've read nothing indicating that none of the Magi were disabled, so I think we might get away with it.

I think it looks beautifully cosy, organised, tidy, Christmassy. That's the close up. For the full story, take a look at the picture below.
Much more like real life!

Hopefully the eye is still drawn to the tableau and the tree.

I could probably make a clever point here about where my focus needs to be, Who needs to be central and above all the daily dross. But I have a feeling it's been said before, and better.

Tia

Humph but a good lunch

The universe has a warped sense of humour. And days like this, I just know it's laughing at me.

Today was my day off. Six whole hours of me time. So it was only natural that the phone should ring yesterday, with a message informing me that the only possible time I could collect various large and heavy items of equipment was mid morning today. This is equipment which Goldy used to use, which we are now passing on to others who will be able to benefit from it.

Mid morning cuts into the day a little; it means I have an hour after the girls' bus comes before leaving to collect the equipment, and means that by the time I've dropped it off, my six hour day has been chopped to four hours. But it is good to have it all done before Christmas.

One hour between the girls leaving and my appointment. Excellent; just a nice amount of time for a bath. So I crawl out of bed a little later than usual, and throw a jumper and trousers over my nightclothes, ready to look more or less decent for when our carer arrives.

All goes well, we get the girls up, including a very last minute emergency change for Mog (thanks, kid), and I wave them off to school. And then discover decorators here to redo Mog's bedroom (something long planned but no fixed starting date). So, no bath.

I grab my coat, pull a brush through my hair and head out to collect Goldy's equipment. I've not been back to her Home since she died; it looks like the Marie Celeste- dirty laundry still in the bin, odd bits and pieces of life lying around. I have planned to take trike and standing frame; and am confronted with other bits of her life I'd forgotten about. Yesterday was all about the little girls; it seems fitting that today is about Goldy. There's a sharp sadness about all this which is mixed with a mild pleasure that I am able to collect these things and let them go to someone else; they won't be going to waste.

Amazingly everything fits into the van and I empty it into our garage and playroom. I'll sort through it later.

Onto the bus and into the city. Having finished Christmas shopping already, I have no big list of things to be done. Instead I have book tokens from last Christmas which need spending, and plans for a big indulgent lunch. I am halfway to Blackwell's when I realise I don't know the name of the books I want nor the author. No problem, time to phone a Friend. Friend replies and requires more information than "what's that series you keep telling me about?". This is a shame really, as it means I have to shout "Vampire Detective" down the phone in the middle of a crowded shopping centre. The crowds thin. I realise at this point that I am still dressed in my nightclothes, they are covered up but still present, and that I have not had my bath either. Joy.

Friend gives me the info (James Butcher, and it's a Wizard Detective not a Vampire Detective for those interested), and I head into Blackwells. Which does not stock the books. Into Waterstones, which does. Hurrah. Eight new books and still I haven't spent all my book tokens. Double hurrah.

Right, I am booked up and ready for lunch. I very rarely manage a solo lunch; and with a new book too it's a real treat. It is therefore a bit of a blow when my first eatery option is closed. The second is not serving pasta, and pasta is an important part of this meal (when eating and reading it is necessary to have food which does not need cutting up and which sticks nicely to the cutlery). I walk round the corner and find an italian restaurant. I suspect the chances of eating pasta here are reasonably high, and indeed the menu looks great. I am about to walk in, when I notice a very friendly couple waving frantically at me through the window. Knowing that if I walk into the restaurant I'll be persuaded to eat at their table and enjoy a social chit-chat, I wave back and walk on. Humph, that was my best chance at a pasta meal.

Walking on, I pass a Pizza Hut. Yes, pasta on the menu here but it's also the last place Goldy and I ate a meal together and I don't think I can face it. Next place has a promising menu but is closed until teatime. By now it's getting towards the time when I need to be either sitting down to eat or forgetting about a starter. Food is important to me, have you noticed that? I walk on, and come to a little French Bistro. Not cheap, but plenty of tables for one, and plenty of pasta on the menu. Great.

Now this is the perfect restaurant. I think next time I manage a meal here I will try to remember to dress properly first. It was not until I had placed my order that I realised quite how scruffy I was. But the waiters did not hide me in a corner nor treat me as anything other than a valued customer.

I ate.
I think I ate quite possibly the nicest meal I have had for a good couple of years, and I've had a lot of nice food in the past few years.
Champignon Farci - A big flat mushroom, stuffed with spinach, with a soft boiled egg on top and an amazing Gruyere sauce. Too good to read through; I had to concentrate on the food. And the conversation from the collection of solicitors on the table next to me.

Seafood ravioli. Mmm, 6 hours ago and I can still taste it.

The most splendiferous creme brulee.

I will be returning to this restaurant one day. But for now, time is up, I need to heave myself off the chair and waddle my way back to the bus stop. It is here, that after a brief interlude involving the most perfect meal ever, reality reintrudes in the form of a bus pulling out from the bus stop just seconds before I arrive at it. No matter, I have books and a bench. And then the chatty couple from the Italian Restaurant show up. OK, I'll be polite and sociable for a few minutes, won't kill me (I might have to kill them though). Next bus arrives and we find seats, not together. Excellent, a bit of space to digest the meal and maybe catch another chapter before I get home. Just as the bus is about to pull out, a woman throws herself through the doors, past the driver and into the seat beside me. It is the mother of one of my old school friends, and she wants to know all about everything I've been doing for the past three years. I have to break the news about Goldy.

We arrive at my stop, I leave the bus, and realise that somehow despite missing the first bus, I have still arrived home 45 minutes too early. I could have had another coffee in peace. Never mind, it was still, overall, a good day.

I walk back into the house and am hit with a mega blast of paint fumes. Mog will be sleeping in my room tonight and probably for the rest of the week I think. And now I need to go and have a bath. And change.

So how was your day?
Tia

Adoption Day

In January 2006 I was at a Christmas lunch hosted by Social Services for Foster Carers (yes, we do tend to run late). As is my habit whenever I meet my own social worker, I asked if they had any spare babies for me yet. Imagine my suprise when, instead of falling off her chair and changing the subject, my social worker instead grabbed another social worker, who handed me a little picture of a totally gorgeous little baby. Three paragraphs of info about the child, spina bifida, multiple complications, short life expectancy, and a pair of beautiful blue eyes. Fluffy baby hair scrunched into a pineapple at the top of her head.

As these things do, it took time. By July we had more or less finished the Adoption Assessment (Form F), just missing the deadline for the August Panel (Panel being the group of experts who have the job of reading all the paperwork and deciding whether or not to approve prospective adopters and fostercarers). So we hit September Panel instead. Unusually, Little Fish was staying with me in September when we went to panel; her fostercarers had booked a holiday with the expectation that LF would be gone by then, so she came to me for a fortnight's respite. Lovely for me to be able to meet her, especially as it allowed me to meet her back in July, so I did get to see some of her babyness which was great.

Panel have only recently agreed to allow adopters to attend. They haven't quite got the hang of this yet; instead of using the adopters' presence as a chance to learn more about them they instead found two questions to ask; it was very obvious that these questions had no real relevance to the decision in hand but had been thought up to give them something to ask. The first question was "why adoption, why not continue to foster?", which had been covered in huge detail as a part of the form F - I had no intention of stopping fostering but I also felt that the time was right to take on a child without having to run all decisions past the social workers first. And the second "How do you go camping with children in wheelchairs?". Answer: simple, tents don't have stairs or steps so what's the problem?

I was approved. For some reason it then took three months for us to get to Matching Panel. This is the panel which takes the lists of children waiting for adoption and the list of parents wishing to adopt, and checks for a good match. I understand that there was initially another family interested, but that the local authority had already decided I was the family they wanted for Little Fish, so this Panel meeting was, I think, pretty much a formality. They did have to agree the adoption support package though; in the UK financial support for adoption is not automatic.

It's bad practice to move a child just before Christmas, so the introductions were delayed until January. I can understand this; you want the child to associate Christmas with Christmas, not with the loss and confusion caused by moving from the people you think of as parents.

Introductions were interesting; Goldy and Mog were here of course, and I also had another fosterbaby just on short-term loan. He ended up moving out the day Little Fish moved in, so for parts of the introductory period I had four children at home. Not necessarily the most relaxing of times! We had a fortnight of intense visits, building up from a few hours to full days, with me helping her fostermother put her to bed at night too, to get used to her Nippy Ventilator.

Little Fish seemed to enjoy this time, although it was very confusing for her. She had lived with her fostercarers since being discharged from hospital age 3 months. They called themselves Mum and Dad, she had brothers and sisters and a whole life which she was being removed from. She was extremely clingy with her fostermother, screaming whenever fosterMum left the room or put her down. I don't think Little Fish enjoyed the leaving and returning bits - what she did enjoy was the chance to make a mess here. I have dozens of pictures of her emptying my drawers, spilling toys out onto the floor, scattering plastic bags. She also managed to collect a bump on her nose (fell out of a chair), scrapes on her legs (pulled something on top of her), and various other marks. She came each day dressed impeccably in ironed frills with a pineapple on her head. And left each day battered, scruffy, coated in food and spilled milk, tired and confused.
But at the end of the two weeks, on her final visit, I walked into the fostercarers' house. This had always been a cue for her to begin crying and clinging to her fosterMother. There she was, sitting on the floor in a beautiful baby girl pink and purple outfit with black patent leather shoes and ringlets arranged in that inevitable pineapple. To the suprise of all of us, she reached her arms up towards me for a cuddle. I scooped her up, she kissed her other family goodbye and was perfectly happy to be carried into my bus and driven home. There were tears when she realised we had gone, of course there were, but in those two weeks her fosterCarers had managed to move her on from relying solely on them to being able to trust and attach to me. I wll be forever grateful to them.

Little Fish came home at the beginning of February.

At that time, we were expecting Goldy to be moving out to her new home in the next few weeks. This was delayed, and she did not end up moving out until July. This in turn delayed Little Fish's formal adoption, since I did not want to send in the application until Goldy had moved on. I knew that if something went wrong whilst I had three children at home I would need the support of Social Services, and that this would be more easily obtained with Little Fish still fostered. I don't regret the fact that Goldy stayed for longer; Little Fish had a chance to get to know her as a sister, and Goldy loved babies and small children, so they (and Mog) were happy.

The papers went in to court in September, and after a couple of small delays (minor complications, nothing worrying just irritating), we went to court this morning, where a judge declared us officially Mother and Daughter. And Sister; he didn't leave Mog out.

When Little Fish moved in in February she had one word "Dat". She pointed to everything, shook her head for no, and during introductions began a wobbly "Mumma" for me which was lovely. Her disabilities mean that she should not be able to talk. She's now using four word sentences.

Litle Fish's disabilities mean that she was not expected to be able to sit up. She can sit, she can get herself into and out of a sitting position, commando crawl along the floor, and operate both powered and manual wheelchairs.

Little Fish ought to have significant learning disabilities. She doesn't.

Little Fish was put onto a palliative care regime as an infant. She failed to be palliated. We're still now picking up on treatments which were discontinued at that time and need to be reinstated. Her life is still likely to be significantly shorter than the average. But she is, in general, a happy, healthy, solid, active and busy child.

She is a very different child to the one who moved in in February. Her hair is shorter and definitely less polished. Her clothes are more jeans and t-shirts than frilly ruffled ironed princess dresses. She generally has a cut or a scrape or a bruise or some other reminder that she is an active two year old. She has glasses, she is fully mobile (and lethal) in her wheelchair. She can feed herself, and create more mess in less time than any other child I know.

Welcome (officially) to our family, Little Fish.

Tia
PS Thank you Trina for doctoring the photo at the top of this page. Isn't it beautiful?