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.

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.
Tia

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)

Randomness

Photo from a cobblers we found on holiday.

Bump!

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...

Tia

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.

Tia

Identity

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.

Tia