Monday, 31 October 2011

Playing with photos






It's Monday. The girls are back at school, Great Grannie is back at home, and I have the house to myself and no special agenda beyond making bread for 25 before we go to Helen House. And I have 130 photos from our week away.

I have been playing.

And, after several hours of tweaking, I have finally beaten the printer into submission, forced it to talk properly to the computer, and persuaded the pair of them not to auto-crop my photos into the shapes they wanted to make them.

Hurray for quiet days.

Thinking though of friends whose days are not so quiet at the moment; ill health in themselves, their children, their parents, complicated legal stuff around the world and closer to home, and I wish I could send them all to a quietly empty autumnal coastline for some rest and refreshment.

Tia

Monday, 24 October 2011

Monday Morning Musings

"Owie owie owie, Mummy, owie all over my body." At just past midnight, and again at half past one. Bing ding bong beepbeep at just after five from the humidifier, and then the ultimate insult "Mummy, this is too loud I want to sleep alone." Me too, and so far the noise has all been down to you,little one.

Silence.

And then seven o'clock, and "is it morningtime yet Mummy?" Incoherent snarl. And she lies back and chats to herself instead.

"Monday, Tuesday, Wednesday, Friday. Monday, Tuesday, Wednesday, Friday. Monday, Tuesday, Wednesday, Friday." On and on. Cunning torture, or genuine error? Either way, it is effective. THURSDAY, I find myself growling, and I can't pretend to be asleep any more, and the day proper begins.

It does get better.

A full day of rain but some lovely cowl, a nice Manor, a fine collection of flat irons and many memories from Great Grannie. "We were to bottom of the scale really; we only had two live-in maids and Groom." I suggest that possibly the live-in maids and Groom were lower in the social scale, and the blank look reminds me that such people were not on the scale at all a century or so ago.

Groom, who also did the milking, drove the Governess Cart, polished all the shoes and saw to the boiler, was paid £1.13.03 a week, on which he supported his two maiden sisters. I can't help but wonder how this compared to the school fees for Malvern.

These are memories worth recording somewhere.

And I realise it's now Monday evening, but it's been that kind of a day. And now we can't eat until we solve the last crossword clue "Cotton Twill" A_I__. Any ideas? I'm hungry.

Tia

Thursday, 20 October 2011

Shiny!

Eight years ago, we moved house. We had a very simple plan; pack up, drive across town, unpack, be reasonably sorted, then take Mog to Helen House for a couple of nights, get Goldie to hospital for a minor op, and have both girls out of the house so I could get things straight.

Things didn't quite go to plan. The mortgage money didn't reach the relevant bank accounts until late afternoon, and without it, the estate agents weren't going to hand over any kind of key. Eventually we had the key, and I had just long enough to tell assorted people which bedroom belonged to which of us and remind people that under no circumstances were the removal men to be allowed to assemble Goldie's bed (complicated profiling hospital bed, we had a spare bed for her to sleep on that night, and the medical company were coming in the morning to put it back together again), before I had to run with Mog and introduce her to the hospice staff.

Mog duly settled, I left her in good hands and returned home to find that everyone had interpreted "do not assemble the bed" to mean "we'll do Tia a favour and assemble the bed", incorrectly and invalidating the service contract on it. But I'm not bitter. They'd also helpfully unpacked the kitchen, sorted beds and bedding for everyone for the night and beyond, begun to unpack all the rest of the boxes but ensured we had a wheelchair spot all the way through the house. Organised chaos.

Friend went home, family went home, and Goldie and I settled down for the night. In the morning, we escaped the house just as the workmen arrived to dig up the drive and build a ramp to the front door. Mog being reasonably happy at the hospice (it was her first ever visit), Goldie and I went off to hospital. Where we sat. And waited. And sat around some more. And waited some more. And eventually they found a bed which did have bed sides, and someone came to clerk us in, and then she went down for her surgery.

It occurred to me then that my plan may not have been entirely sensible - rather than having time and space to unpack without the distractions of the girls, I had in fact committed myself to being at home to unpack and sort workmen, being in hospital with Goldie, and being at the hospice with Mog. Not my finest plan.

But still, we survived, and we all came home. And then the fun really began. Goldie's minor op turned into three months on bedrest. And so she lay in her bed, giggling, as the hoist engineers came to fit a hoist in her bedroom. And she giggled for the whole eight hours it took to drill giant holes in concrete blocks to fix the hoist to the ceiling, finding the whole thing hugely entertaining as they attempted to barricade her off with her wardrobe, protecting her bed and her television from the worst of the dust, and shuffling her around the room as they attempted to find the best spots for the hoist.

And slowly, we unpacked. We moved from a three storey Victorian terrace to a '60's flat. We swapped huge bedrooms for more useable living space. So nothing quite fitted where it was intended to go. And the spare boxes ended up in the corner of my bedroom, and in the cupboard in Goldie's room. And the house began to feel reasonably assembled.

Fast forwards a few years, and Little Princess is moving in. At 22 months, she moved with her entire life to date in cardboard and plastic boxes. And it all got wedged into the bedroom we were now sharing, in the cupboard in Goldie's room, and in odd corners wherever we could find the space.

Fast forwards again, and Goldie has moved out. We are having all our floors taken up, covered in latex-free screeding, and then latex-free flooring being laid on top. The house needs packing into boxes, we need to move out, and when we move back in again, Little Princess moves into her own room. We unpack the necessaries, and the "might be useful one days" get stuffed into the corner of my room, and the cupboard in what was Goldie's room and now belongs to the Little Princess.

A few years later, and I am in the process of super-cleaning the house. I have a system, it's actually very effective, especially for the first few rooms. As I sort, everything which does not belong in the room I'm sorting gets put in the room where it should be. If that's a room which is already sorted, I put it away, otherwise it gets dumped on the floor/windowsill/bed/wherever. The first room gets sorted in 5 minutes which is a nice motivator to carry on. Second room takes a little longer, as anything belonging in the first room needs putting away. Third room takes longer yet, and so on. My bedroom, as the worst room in the house, I tend to leave until last.

And then just as I have finished the rest of the house, an emergency foster placement has me setting up a cotbed in my room for the Wahooligan. He stays with us for just a few weeks; the cotbed remains a fixture for the next three years. It becomes my wardrobe, my actual wardrobe being increasingly inaccessible due to the ever-increasing tidal wave of general cruddage, seeping slowly across the floor and leaving me with stepping stones from door to bed. Boxes are stacked, 3 foot high, in front of my drawers, and loose papers and other stuff heaped up and around the chair and onto the wardrobe.

Redecorating the bathroom left a large builder's trug full of bathroom equipment filling the gap between cotbed and my own bed, and more clutter found its natural home under the cot.

Enter Grolly. We are going away next week. She can't come with us. She can't go to our regular cattery as the vet thinks she isn't ready for her boosters yet. I'm not willing to put her in a cattery which accepts cats without vaccinations. And she is so clingy post shed escapade that I don't think she will cope with just a daily visit to feed and water.

And so a friend willing to come and house sit for the week we are away is hugely appreciated. Except that, unlike an odd night here and there, it feels a bit mean to say "Hi, thank you for rescuing us, please camp out on the sofabed." So sorting out the room, at least enough that it was possible to reach the bed without jumping, open the door properly, and have some floor space to put a bag down suddenly became a priority.

Several hours in, it occurred to me that I should have taken a before picture to scare me into never letting it get this bad again record for posterity. Not wishing to go back to utter chaos, I took this mid sort pic. Actually seeing the armrests on the chair mean the big pile-o-stuff has been reduced by several feet.
Two days in I was seriously convinced this would never ever get done.

But, today, after 5 bags have gone to the Helen and Douglas House shop, with another 3 bags waiting to go, with four boxes ready for the tip, a recycling bin filled 8 days before it's due to be collected, a rubbish bin also full but due to go out tomorrow, and a small forest's worth of reasonably confidential documents shredded (and, worryingly, just a small handful of documents actually worth keeping), I can see my floor.
And it is shiny!It isn't perfect. But oo look at all that floorspace! Add that to the three wheelchairs and two specialist armchairs Demand took off my hands earlier this month, the various boxes of "use it once a year" stuff which has made it back to the garage, the major clearing out of the cupboard in the Little Princess' bedroom, and I am pleased to say that not only is the last house-move box finally unpacked, but that the house itself appears to have grown by several feet in each direction.

And the best bit? We're going away for a week, home for a few days then away again, so by my reckoning, I can't possibly mess it all back up again until at least mid-November!

Tia

Sunday, 16 October 2011

Ruby Wedding, the remix

Aimer, ce n'est pas se regarder l'un l'autre, c'est regarder ensemble dans la même direction
This quotation from Saint Exupéry has been hanging on my parents' kitchen wall since we were children.


Family legend has it that when my Father wrote to his brother, asking him to be best man, my uncle wrote back accepting but on condition Dad was his best man the week before. I wonder what the rest of the family thought, spending two weekends in a row attending twin brothers' weddings in different family-of-the-bride dependent locations? Perhaps it's best left consigned to history - big year for my Grandparents, certainly, and I suspect they were thankful to be parents of the grooms and not the brides!So a wedding happened, and a marriage began. And several children, much travelling (anyone else camped (under canvas) for three months straight from California to Canada, down to Mexico and back again? With three children under 11?), lots of growing older and sharing the same vision, and


seems appropriate really.

Forty Years on, and the two Ruby Wedding Celebrations were spread out a little farther (to allow for a rather jolly trip (not by me) to Zanzibar in the middle). My Uncle and Aunt's party in August, and Mum and Dad's yesterday.Lots of preparation involved in turning the church hall into something suitably Rubily festive, without hiding the Guide and Scout noticeboards since Guiding and Scouting is how Mum and Dad met, and since Dad's old Scout Leaders were able to attend. Importing the youngest and newest Guiders as washer-uppers and drinks-servers seemed quite appropriate too, really.

Friends and family filled the hall
Four generations , plus friends including some not seen since the wedding. Warmth and laughter and conversation, scones and sausage rolls and sleeping babies.
Toddlers on trikes
and an attempt to summarize a marriage in 50 photos or less.
And then toasts, and more friends whipping through the clearing up in record timing, and more food and home with two tired grandchildren, knowing that the other Beales Junior were either present in Zanzibar or are preparing for Grandparent invasion in Scotland next month. We thought of you all. We're thinking of you still actually; wishing you were here to help plough through the piles of mini pizzas and chocolate brownies, and wondering if you have any ideas to use up champagne which was poured out and then not drunk.

Big thanks to everyone who helped out, and bigger thanks to Mum and Dad, for making the decision to get married and to go on being married; for putting up with everything we put you through and to keep on being our parents anyway; for giving us a stable loving home, and giving your children and now your grandchildren an example of what it takes to grow a good marriage.

Happy Anniversary! And I'm so pleased that finally there were no other family Graduations, Weddings, Dedications or other events to get in the way of actually managing to celebrate with you.

Much love,
Tania

ps - Dad - we really did have a party for Grandma and Grandad - anyone else in the family care to prove me right on this?

Thursday, 13 October 2011

Artwork

This picture belongs to the blog entry immediately below it. But either my computer or else the entire world is playing up, and I can't post it there. So here it is; enjoy.

Tia

Sweetness

Sweetness is:
  • a small child, waking up every morning and calling out "You are my favourite person in the whole wide world and in the universe."
  • the same small person, wanting something; "Axcuse me, if you possibly, could I have maybe a piece of paper?" Or a wipe, a pencil, a cuddle.
  • half-stirring, as I give her her late night meds "Aahhhhh. MY Mummy...." and drifting off gently again.
  • or at midnight "I sorry I waking you, Mummy, but please may I have a turn over? I am not comfy in my hips."
And she is mine. Discharged from hospital when she was as well as the medics ever thought she would be, and placed with foster carers who loved her and kept her safe as the search for a permanent family went on. And with a long and complicated set of gloomy prognoses she waited, and I waited, and the courts and social services did their bits, and then finally she was mine, and I was hers.

And now every morning I have a daughter who needs "ten kisses" to store on her fingers in case she needs them during the school day. And I have a daughter who hugs the bus escort and thanks her for looking after her on the drive home. And I have a daughter who makes friends with everyone she sees, or at least everyone who will slow down long enough to respond to her hello. A girl who brings me dandelions and pages and pages of illustrated stories only she can tell me. A child who loves to sneak up quietly, and rest her head on my arm, or slide her hand inside my cardigan and hold on gently; she has a hundred different ways to snuggle in.

And she's here through adoption. And it did take a while - she was two years and nine months when the adoption order was heard in court. Twenty two months when she moved in with me. Eighteen months when she first visited our house, fifteen months when I first met her, and nine months when I first heard of her existence.

With hindsight, some of those delays should have been avoidable. Christmas slowed things down for a month. There were two separate panel meetings, one to approve me as an adopter, and one to approve me as her adopter. Three months could have been saved if they had both happened at the same time. August and summer holidays slowed things down again.

But, she came when the time was right. If she'd come earlier, I would not have been in a position to foster a child who has since become quite special to us. She would not have had her familiar foster carers to support her through adjusting to overnight non-invasive ventilation, but would have had to have learnt to cope with that whilst also learning to live without them. I would have had a year or more juggling three extremely complex children, rather than just a few months. Social Workers would not have had time to sufficiently examine other prospective parents. Sometimes, adoption needs to be slow.

And four years on (not that today is any kind of anniversary; just that adoption has been in the news, on Women's Hour, on You and Yours, and therefore on my mind these past few days), the delays don't matter a bit. True, I missed her baby days; I didn't get to see her first birthday, her first Christmas, her first taste of real food. But I got her first drink, her first non-pureed food, her first words, her first reading and writing. And I get all those things I listed at the top of the page too. They're mine, because she is mine and I am hers.

It isn't easy, it isn't perfect, and adoption doesn't create a new birth family. There are issues to do with adoption, as any adoptive family knows. There's loss, such a lot of loss. My daughter had just one extremely loving and experienced set of foster carers from when she left hospital until she came to me. But that means that on that day when I finally picked her up and drove off with her, knowing I didn't have to bring her back again, she lost her second set of parents. She loves me, I love her, but that loss takes its toll. The fear that I might disappear on her one day is always there, however deep down it gets buried in the good times. And there are questions. Some I can answer, some I can't. All difficult.

But despite all that (and the tantrums, and the challenges, the crayon on my walls and pencil on my furniture, the destruction which comes with driving a tank), the Little Princess is my Little Princess. And that makes me one of the most favoured ladies in the land. Teams of people weighed things up and decided I was the Little Princesses best option. And they handed her over, and let me get on with it.

The statistics say adoption levels are reaching new lows here. I know that, to an extent, Special Guardianship is taking over. And that's all good too - my Mog is mine through Special Guardianship and it is absolutely right for all of us involved. But if you're considering adoption, then why not investigate it further? You can't have the Little Princess; she's mine, I found her first. But take a look here at some of the other children in the country waiting for new families. You don't need to be married (I'm not), you don't need to own your own home (I didn't back when my first children came), you don't need to be employed or earning vast sums of money (financial support can be made available if you are adopting a "harder to place" child). Do you have the time, space, or energy to find a /Little Prince or Princess of your own? My life is immeasurably deeper for it.

Tia

Tuesday, 4 October 2011

Finding a place in the world for a Little Princess

I was on the computer when the Little Princess and Mog came home from school this afternoon. the Little Princess graciously allowed me to finish reading before demanding CBeebies. Which is good, as I was scrolling back through this post over at the Henn House.

tLP was fascinated with little E-F. She has Spina Bifida, just like me. She has a wheelchair, just like me. She has jelly on her back (ultrasound), just like me. She has to go to hospital, and wait, and sit, and see doctors, just like me. She has catheters, just like me. She has to have operations sometimes, just like me.

And then we clicked to the previous post. Such beautiful photography. But what are those? Why can I not stand up like that? My splints are stupid and I actually do hate them. Meltdown.

There's only a couple of inches in it. If her lesion had been a couple of inches lower, chances are she'd be able to walk, like every other child and adult she knows with Spina Bifida. Then again, if her lesion had been a couple of inches higher, she'd probably be either dead or totally ventilator dependent and without the use of her arms. But that's small compensation when you're six.

tLP knows she has Spina Bifida. And she knows that's why her legs don't work. And why she gets to spend so much of her life at hospital, at appointments, with therapists. It's why she needs catheters, and why she can't balance well enough to do them herself. It's why she needs spinal surgery, and it's why she can't have the operation which would fix things up the most effectively, and will have to go for a more complicated and less successful patch up job instead.*

Most of the time, she thinks of herself as pretty able (or possibly, pretty and able). At school, at Godzone and at Rainbows she has friends who include her just as she is, and she would identify herself far more with her able-bodied friends than with Mog and Mog's peers. She's used to people envying her wheelchair - and only gets upset when small boys attempt to take over steering or button pressing. If she's in her manual chair she'll push it herself or gladly commandeer a friend to push it for her - and so far, her friends will happily line up to give her a boost when needed.

And then she sees someone who might really be "just like me", and realises they can do that bit more. And I know she doesn't see the fact that for E-F, walking isn't the simple ballet her classmates dance, but the huge achievement rolling across the floor is for tLP. She just sees "that girl like me" suddenly "not like me" after all. And I see how much walking does mean to her, even though she doesn't really talk about it much. And the best and most evenly cut little squares of cheese with matching squares of ham, and a raisin and a cube of white bread with no crusts can't compensate for that.

But then she wants to know more. And she isn't envious, she's impressed and excited for little E-F, this little girl she's never met, but who is mostly "like me". And she shelves it, and we watch some CBeebies instead. Which is, as it turns out, a wise choice. Because right there, right then, on Mighty Mites, there is a little girl sitting on the floor "like me". Who is then in her big power chair "Like my old chair" and showing the world how to do ten pin bowling with a big ramp to roll the balls down. And our own Little Princess is an equal again; she can bowl and she can she can drive her own chair, and there are other children out there like her and they are having fun, and she can have fun like that too.

GiggleBiz comes on next, and there's a little girl with a naso-gastric tube, and "that was like I was having that one day", and hurrah for CBeebies and for blogging parents who are willing to throw open a window onto their lives. So we move on towards bedtime, and I wonder whether tLP realises how different her bedtime routine is to most of her friends, but decide to shelve that for another day. And we read Charlie and Lola, and she does some excellent sounding out and I don't kill her, although I quite want to, for insisting that g o o d spells DOG, and I leave her on the pot for a minute as I go to fetch her drugs.

And then I hear muffled thumps from the bathroom, and stand in the doorway watching as she picks each leg up in turn with both hands, dropping her foot back onto the floor then twisting to reach down for the next. Lift, drop, repeat, lift, drop, repeat. "Look Mum, I am walking."

And it matters.
Tia


*Complicated, but boils down to the fact that she can't have rods to the base of her spine as the base of her spine is split and frayed rather than being one solid lump, and can't go through her back to get to her spine as the myelomeningocele has left too much scar tissue and wodges of spinal cord. Deeply untechnical explanation.

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