Friday, 27 January 2012

Mostly Good

Everyone up and off in time for school; two girls into chairs with no fussing and two cats sniffing each other instead of hissing.

A long deep bath, interrupted only by the occasional pair of blue eyes peering over the side, querying why on earth I'd want to mess up a good waterbowl by climbing in with bubbles.

A minor panic at the realisation I'd left myself just four minutes to get dressed, and then an inevitable interruption - this time from school saying Miss Mog was all "white and spiteful" and Just Not Right. I did however still manage to be clothed and decent before being picked up; I'm sure my friend was grateful for that.

A diversion to collect a fairly limp and pale Mog from school, and then on to the important business of the day - coffee with the ROSY ladies (and George). Where else can you go, be introduced to someone for the first time, and find people uttering the warning "there's a lot of poo talk, just so you know"? And there aren't many places where you can sort out an evening out, babysitters for that same evening out, and the loan of a changing bench for three weeks in the summer all without having to put your coffee cup down or pick up a phone. Nor are there many circumstances where you can be sniffling over the death of a friend's child whilst simultaneously discussing the creation or arrival of each others' children - conception, birth, death, poo and parties; we cover it all in just a couple of hours.

Move from coffee on to lunch; more chat, more laughs, more yummy food and a good prowl around the antique shop. Must. Resist.

Fortunes safely unspent, and home to the post. No much awaited parcel, just a speeding notice and offer to attend a Speeding Awareness Course or else take points and a fine. Grump.

A Grannie visit, and a photo of my precious newest nephew, born on the 25th. Congratulations to the Scottish contingent! And well done on finding a name which is truly unique and sounds well beside his sister.

And then the best news of all (because new baby news I've had for a couple of days now), two cats sniffing and finally kissing before settling down in different corners of the same room.

Tuesday, 24 January 2012

Fluffy Stuff

Grolly is not best pleased with life right now.

There's a house invader. And he seems to be filling this house just as much as he fills the doll's house.

He's a lap surfer,
A child-fisher (it's possible she's a kitten-fisher, but it seems to be about equal),
phone hogger,

and power napper.

And her nose is seriously out of joint.

That said; it's not going too badly. They've met each other and had the odd hissy stand-off, but nothing more. Overnight, Benjamin has the sitting room and his beloved computer table, and Grolly has the rest of the house and the whole wide world. During the day, they both have most of the house, Grolly has exclusive access to my bedroom and the cat flap . And I'm only feeling a little bit like neutral territory when I have kitten on my shoulder peering down and cat at my knee, determinedly not looking up.

There is more to life than cats right now, but they do seem to be a fairly huge part of it.

Friday, 20 January 2012

New Arrival

No, not the one family are waiting for (but all the best with that, Y!) Nor yet a temporary fosling. But please meet Mr Benjamin Boots.

Please also ignore any typos, as he's standing on the keyboard trying to help me type.
Unlike Grolly and Gotcha when they came, he shows no fear.
Meep. Please come and play.

Excuse me.
Normal service may be resumed at some point when he deigns to slee.p. (extra full stop delicately inserted by one white paw).
Tia0000 (those OOs too)

Thursday, 19 January 2012

Tuesday, 17 January 2012


This letter arrived for Miss Mog the other day.
It's come from the same hospital which has repeatedly sent out letters cancelling an appointment and rearranging it for exactly the same time and date, so when I read the new appointment I initially thought this was the same thing. And then I checked the original date again, and realised that no, this was a genuine shift of date and time,

So why, then, did this appointment time ring so many bells?

All was made very clear when I opened the Little Princess' post
Sorry, tLP; your sister's stolen your appointment.

Shame; for a brief moment it appeared that I would have two children having appointments on the same day with the same consultant. It was very nearly joined up thinking...


Monday, 16 January 2012

On a lighter note...

Because things aren't all grim here, and we do actually have quite a nice jolly time most of the time,

A missed photo opportunity - Grolly Beast playing with Mog's switch. Apparently, a toggle switch is just the right shape to really get behind those ears when you're moulting. Apparently, a cat using a switch to say "Hello" repeatedly is the Funniest Thing Ever if you're a girl under ten and living in this house.

And, in other news, did you know, I am the Mother of God? There's promotion for you! Who cut her back aside, the Little Princess' other big query is "Why I not got a Daddy?" And yes, we talk about her life story, we talk about her birth father, we talk about how there's just me so if she wants to keep me as a Mummy, she has to manage without a Daddy. And then we talk about how no one has to be without a Daddy because we all have a Father/Daddy God in Heaven who will be our Father if we love Him. And we talk about how Jesus loves us, and how if we love him and ask him in, he will always be with us, so we will never ever be alone, not even if it's night time and the lights are out and everyone else is asleep in different bedrooms.

We find bits of the Bible where Jesus says anyone who loves him is his brother or sister. And tLP is delighted. She has a Daddy God in Heaven, and now she has a Brother Jesus too. A Daddy and a Brother who love her, and who will always be with her, and who are always ready to listen and to keep her safe. But wait, see, because I am her Mummy. So if Jesus is her brother, well, you see where this is going? My middle name is Mary, after all.

The world can be a very confusing place when you're six. And possibly even more confusing when you're the mother of a six year old.

Oh, question for the wise readers. Anyone got any recommendations for a nice friendly "where do I come from?" type book which is preferably literal enough not to go down confusing side alleys regarding aliens or the laying of eggs, no special sneezes, and ideally one I can adapt to include cesarean sections and adoption too? Failing that, anyone fancy writing one?

Many and varied are the conversations I never thought I'd have. One of the bonuses of having a neuropathic bladder is that you're very familiar with medical names for various body parts. Explaining that no, you don't squeeze babies out of your urethra and they won't block the catheter has to be one of the more unusual things I've done this week.


Sunday, 15 January 2012


Sometimes, I can be startlingly slow on the uptake.

For four years, I have rubbed creams into this back. Removed and replaced vests and swapped t-shirts for pyjamas and got cross when she wont do it herself, traced the march of her spine from vagely midline to its current very off-kilter position.
And it only occurred to me a few days ago that the Little Princess has never seen it herself. She rubs it, runs her fingers over the squishy bit and says it hurts, patters delicately down exploring the change in sensation from full feeling to anaesthetic, and occasionally finding a rougher spot. She asks me, and I tell her it is her lesion, her myelomeningocele, her spina bifida. The spot where her nerves came out of her body, and the reason why her legs and various other bits don't work so well. She nods, we talk about the difference between her Spina Bifida and Mog's Cerebral Palsy, and we talk about everything she can do and how whizzy she is in her wheelchair and how much I love her and how precious and special she is to me.

And then she snuggles down to sleep, and I pat myself on the back with how efficient I am at explaining these things, and life goes on.

So this time when she asked, I took a photo. I showed her. "That's not my back. Who cut me?" I explain, once again, that this is her lesion, her Spina Bifida, the bit where there was a bag of nerves hanging out of her back. That no one cut her, but the scar is from where the doctors put everything back inside.

She remains adamant. This is Not Her Back. And I think, should I have shown her earlier? I haven't been hiding it from her; I just never thought about the fact she hadn't seen it. And I realise we haven't discussed scarring from her upcoming surgery.

My little girl has a scar on her stomach from where her VP shunt was inserted, and a weepy oozy hole where her gastrostomy lurks. We've counted up the tubes, and she knows roughly where each one of them will be, but I never thought to ask whether they will need to cut her open too. I assume you can't chop a bladder in half without making an incision to insert the knife at least. This time next month, she will have a pattern of holes and tubes on her front, as well as this new-to-her long scar and birthmark on her back. War Wounds from the battle against her broken body. How do I give her a good body image when we're throwing so much time and effort into, and putting her through so much pain in order to patch up and improve that same body?

She has a zip at the back of her neck, a bald patch behind her ear, a permanent record of previous surgeries. Her forehead has a neat white scar - her fringe hides it, but people have been known to ask if she was shot in the head. Nope, it's another battle injury - the pressure sore formed by prolonged use of the only mask suitable for Non-Invasive-Ventilation when she was much smaller. Smaller, more delicate scars cover her ankles; an unsuccessful attempt to straighten her feet. And a long fat scar winds its way down one hip, the hip which is now firmly attached to the leg which has been surgically shortened in order to reduce the risk of it dislocating again.

All these, she knows and accepts. She sees them and does not question them; occasionally likes to hear the story attached to them, but they are just a part of her. They will, no doubt, be added to over the years. Already we have another major surgery lined up for when she recovers from this forthcoming major surgery. But these she can watch growing. She sees the dressing, spots the stitches, screeches as they are removed, and supervises the scabbing over and the new skin forming.

And now suddenly she has been presented with a new picture. The back she strokes so carefully, stretches gently and twists out of achey postures and into newer ones which can't be comfortable, the pudgy squidgy bits with no bone where bone should be, and the fluffy hair bit where no hair should be growing. All this has been known to her fingertips for as long as she has been able to reach behind her. But seeing it has been a shock. We talk about those other children she knows, or knows about, who have Spina Bifida. We talk, once again, about the job nerves have and how her nerves can't send messages properly. And we look at the picture of her back, o I can talk about her nerves and trace a pattern on her back and on the photo at the same time. But "That not my back. Who cut me?" remains her response. And as she sleeps, the nightmares are back, and she wakes up complaining her back hurts.

And it doesn't matter that I think she's amazing, it doesn't matter that God thinks she's brilliant, it doesn't matter that there are hundreds of things she can do. Because there on her back is a giant great scar, commemorating the quirk of development which led to her disabilities. And she'd like to know who cut it.


Thursday, 12 January 2012

Having a Laugh?

It's just a bit of fun, that's all. Knock on the door, ring the bell, rattle the letterbox then run like fury. Stop at the corner, watch the face of the woman who gets to the door, laugh loudly so she knows it was you, then run some more. All good fun right? Never hurt anyone, right?

Well, let me tell you a bit about what happens here in this house when you do that. See, thre's one girl in this house who is hypervigilant. Any noise when she's going to sleep causes her to bolt awake again, panicking, in case Mummy is about to disappear. She's adopted. Whilst she was never abused or neglected, I am her third Mummy. The first one grew her well, nurtured her in her womb for nine months, probably dreamed of her precious new baby. But my daughter didn't go hoe with her. She spent a few months in hospital, then went home with a new Mummy, one who loved her and cared for her, and kept her safe until her forever Mummy could be found. And then she came home with me. And it doesn't matter that all three of those Mummies loved and love her; deep in her soul there's an injury; an abandonment, the conviction that I will one day walk away and she will be on her own.

Every time the door opens - and she can hear the handle turn in her deepest sleep, so deep rooted is this fear - she thinks that's it. She wakes up, scared, needing reassurance. She hears the voice of our visitor, recognises a friend or carer, smells the takeaway I may have ordered, and accepts that this time, it is ok. I am going nowhere, and she can sleep again.

But then you knocked. Who is there? No one. She doesn't understand that. Two boys playing a silly game. She definitely doesn't understand that. She is suspicious; this must be a trick. This time, this really was the time when I was going to walk out, only she has caught me out by waking up. She'd better stay awake all night, in case I try again. And she'd better call out regularly, just checking I am still there.

And then I have an other girl. This one has epilepsy. Loud noises give her fits. Friends, family, carers, they all know to let themselves in quietly if she's gone to bed. So your fusillade was hugely unsettling. Seizures, electrical discharges misfiring through the chaotic caverns of her brain. A stack of fireworks being set off in a small box. Killing off random braincells - and she doesn't have all that many to spare. Epilepsy kills. There's a chance one day that she won't come out of one of these seizures.

And so as I stand at the door, and I see your laughing faces, before you turn around and run off, I don't give you the satisfaction of even thinking about giving chase. I close the door, quietly, and try to reassure one child whilst moving things out of the way of the other, calling out to one girl so that she knows I haven't disappeared whilst piling pillows up against the hard sides of the other's bed, giving her space as her limbs thrash uncontrollably. And then, noting the time, in case I have to give emergency medications or tell a paramedic later, I leave her in her seizure and go to calm the hysteria.

Do you get a bigger laugh out of that?

Wednesday, 11 January 2012

Soundtrack to my life

Because Miss Mog has found her groove again, this is what we're hearing from after school until the Tizanidine terminates all thought, and from midnight until the Tizanidine does its thing again at 5am.

Don't try to interpret the Little Princess - they both think gobbledygook is funnier.

And, because life is just that interesting, I (hopefully) include links to two of my regular evening noises with no prize other than infinite kudos to whoever correctly identifies them both. Alternatively, this will be yet another blank post with baffling references to invisible links. Bear with me; I can't upload videos any more for some reason so am trying audio files instead.

Edit: because I am not technically literate, this is not something which is going to be happening tonight. Or any time soon. In the meantime, hopefully, here is the video which I couldn't get to upload earlier. Sometimes my life is unnecessarily complex.

Oh, and does anyone know how to convert voice memos from the iPhone into a more transportable audio file?


Tuesday, 3 January 2012

Beechenhill Farm

It's a family tradition now that we go away for a few days after Christmas and before school begins. Well; mostly before school begins. The company varies, the location changes, but the constant seems to be that we leave extended family behind, gather friends, and find somewhere peaceful then spend the next few days destroying the peace.

A lovely week in Shropshire last New Year; but with a fairly significant disadvantage of a non-accessible cottage. Two steps down to get in, and a picturesque but not pretty precarious steep wooden staircase to get to the bedrooms.

Beechenhill Farm made up for all of that.

Their Cottage by the Pond is an accessible, 3 bedroom cottage converted from an old cowshed. It's beautiful. Big, wide, sliding doors. A bathroom approximately three times the size of ours (although a hoist over the bath would have made it perfect), shower chair and mobile hoist and profiling (though not height adjustable) bed. Two downstairs bedrooms, so neither Friend C nor myself had to be noble and volunteer to carry children upstairs.

Plenty of space for all three wheelchairs (unless one of the three is a six year old who drives a tank and insists on sitting in doorways in it), and a very beautiful wood burning stove in the sitting room.

And views like these from the windows. Well, mostly views like the one at the top on the left there, or huge great walls of cloud, the High Peaks apparently having their own little mini micro climate mostly consisting of thick blinding rain. But with views like this on the one day it didn't rain, we'll not complain about the rest. Even in the rain, it was a spectacularly beautiful place to be. Soul food.

Stomach food too; we were able to buy milk straight from the milk tank, and had eggs, sausages, bacon, so-fresh-it-was-still-warm bread and a nice pile of readymeals all waiting for us when we arrived.
We tried to persuade the chickens waddling wide-legged around the yard to lay extra fresh eggs, but sadly they didn't oblige. The Little Princess did get to go on a mini expedition to meet the calves and refill the milk jug though; it probably doesn't come much fresher than that.

We will be back; a thick folder full of ideas for accessible outings and even rating accessible pubs and restaurants (we decided to avoid the one where only the crisps were recommended) and we didn't begin to scratch the surface of it. I think we may need to see this place in all its various seasons.

And then a nightmare of a run home, with a poorly Mog who decided the vibrations of the van were the perfect percussive chest physio. This would have been helpful, if it didn't mean we needed to pull in every 15 minutes or so to suction the loosened gunk, turning a predicted 2.5-3 hour journey into an epic 6 hour marathon. She's looking great now though; it was clearly exactly what she needed.

Oh - and how could I forget? A new first for us; enough electrical sockets in the bedrooms that we could hook up CPAP, ventilator, humidifier, 2 feed pumps, sats monitor, video monitor, and still have a spare socket for reading lamp without having to use a single extension cable. We can't do that at home!

We will be back.


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