Sweet Grass

We're home from hospital (hurrah, huzzah, and much additional rejoicing), we have our own beds, and I have the opportunity to indulge myself with a long phone call to Friend.

My friend is slowly watching her mother slip away as Alzheimer's alters her personality, and struggling to remember the mother she used to know so well, who is currently being replaced by someone who is nearly, but not quite, entirely unlike herself. It's hard.

Hard too is my friend's struggle to contain her own embarrassment at some of her beloved mother's kinks and quirks; traits being magnified and shattered under dementia's kaleidoscope. Trying to reach beneath the surface and decide what's important; is it my friend's embarrassment, or is it how embarrassed her mother would have been to see her doing some of the things she is starting to do now, or does none of this matter as long as her mother is happy and not hurting anyone else?

It turns out my friend has had good practice in this, and in working things out, she has given me another precious memory.

When, at 26, I gained an 11 year old daughter, I immediately stepped out of sync with friends and family. That my daughter was severely disabled lessened the gap for some, but created an impossibly wide one for others. It was the start of a general reshuffling of relationships; an unsettling time, but one which has made my life today do much deeper and richer than I could ever have imagined.

Friend is one of the few pre-Goldie friends who made it through to the after years. She has no children of her own - I don't think there is a link! But tonight she reminded me of her own baptism of fire into this brave new world of mine.

Goldie and I lived in a terrace house, close to the town centre. Friend was visiting, and it was a beautifully sunny summer's day. I had dressed Goldie in a newish outfit (not purchased by my); white jeans and a sparkly white T-shirt. With her hair red gold in the sun, she looked particularly angelic, and she was definitely up for a walk into town.

We did whatever we needed to do in town, and then went to the Abbey Meadows to feed the ducks and find an ice cream.

With hindsight, giving Goldie a chocolate ice cream was possibly not the wisest plan.

But she loved it. Arms waving, fingers trembling, hair shaking, she spread that ice cream far and wide, eating enough to give herself a sugar high, and smearing the rest over clothes, body and chair, with a glee which only Goldie could ever truly produce.

Friend looked on in horror as white jeans gathered ice cream drips and dribbles, and bits of cone found their way into eyebrows and ears. And Goldie sang and shrieked, rocked and danced in the sun, attempting to grab anyone close enough to join in the fun.

It being summer, the paddling pool was open. It was warm enough, do Goldie and I dunked ourselves, fully clothed, in an attempt to rinse off the worst of the chocolate goo. This had the rather unfortunate effect of spreading dilute chocolate ice cream across parts not formerly coated, whilst plastering Goldie's golden halo to her face. Oh, and dissolving the sun cream in watermarks across her face.

It is here where Friend's experience and my own begin to diverge. Because once reminded, I can picture Goldie at this point. And she is radiant. She has seized the day, and her face is alight with pure joy. The chocolate and the wet and the general chaos are just echoes of the day, proof that she has extracted every ounce of enjoyment from the experience.

Friend sees a loud mess. Being pushed by an adult also no longer even pretending to be in any way groomed or organised.

Goldie sees an opportunity. And as Friend tries to work out how she can possibly avoid associating with either of us as we walk back through town to our house, and as I think about what we still need to buy for tea, Goldie hears the silence and decides to entertain us.

Now Goldie loved her stories. By which I mean, she loved Her stories. Particular versions of particular tales, always told in the same format with the same dramatic pauses. She had them off by heart. I still have them off by heart. And on this occasion, Goldie decided to retell the story of the Three Billy Goats Called Gruff.

This was one of Goldie's useful tales. Stand in front of her in a shop, blocking her view, and you might find yourself being told "be off with you, ugly troll...much fatter than I am." But today another part of the story held her interest. And to Friend's utter mortification, as We walked through the crowded town centre, chocolate and grass stained, filthy but very happy, Goldie held her long hands out in front of her, waves her fingers in front of her face, stimming on the pattern between light and shade on such a wonderfully sunny day, and celebrated the fact the billy goats could go "Trip trap, trip trap, over the ricketty racketty bridge, into the meadow, to eat the sweet grass." Only, being Goldie, she mumbled most of the sentence, meaning the only audible parts of her speech were "Trip!" (mutter mutter incomprehensible) "Sweet Grass!" (wave hands, rock, screech, repeat).

It was, then, a defining moment for Friend, who had to attempt to step out of her acute embarrassment and into seeing Goldie as a girl totally happy in her own skin. She could, as so many others did, have quietly opted out of our lives, or found ways to keep up our friendship without being humiliated in public. But instead she opened her eyes and tried to enter into Goldie's world. A little bit. And still very thankful this was happening in our home town and not hers.

It is, now, one of her fondest memories of Goldie. And it's helping her to review the way she sees her mother. I hope it helps.

And as I write this, although it really wasn't planned this way, I realise that today is May 31st, and that it was on this date 13 years ago that Goldie moved out of her children's home and into my life. I think it's fitting we should remember a happy Goldie day on one of our happiest days.

Tia

2 steps forwards...

We aren't home. TLP isn't able to eat or drink very much, so is back on a drip. We have four sets of doctors all offering different theories as to why. I think the spinal surgeon who did the operation's theory is probably the most likely, and most of the other doctors seem to agree it is at least possible. However she's now been passed over to a different team who think things slightly differently, so we shall see.

Her spine looks great. She's grown a lot - 3-4 inches I think. Her pain is pretty well under control. The incisions are healing nicely, the X-rays look great, and she's up and in her chair and getting busier all the time.

She managed to eat a small amount today, and only half of it found it's way back to us again. And (gross description alert; don't read if you don't do bodily fluids) last night's vomit was a lovely pale yellow and orange rather than the deep dark green and black bilious yuck she's had all week. Which is, I think, good.

Sentences I never thought I'd say though "Yes, it's a very pretty pink. But put it back in your tummy now please."

Lots of air erupting from everywhere which is great, and a softer although still swollen and tender stomach. But progress. I think.

Tia

Mobile again

4 days post-op, off all lines and drips and monitors, out of bed and on the move! She amazes me. Next step, find a hairdresser, as I've chopped at least a foot off with green disposable stitches, not my finest styling ever.

Back pain generally pretty well controlled by a paracetamol, codeine and diclofenic cocktail. Sadly her guts are still distinctly under-impressed, and most of what she eats and drinks makes it way north not south, whilst an ever-increasing mound of air rounds her stomach out and has doctors drumming on it in joy at hearing something so hollow.

Trump-juice cocktail is harder to track down, but it isn't slowing her down too much.

That said, last night was particularly hideous due to blocked catheters and vomited pain meds, so I'm hoping for a much quieter night tonight.

Tia

Stupid

Stupid is tLP's word of the day.

It's all stupid. Surgery was a stupid idea, HDU is stupid, nurses are stupid, doctors are stupid, and I am possibly the stupidest one of all.

I can understand that. A bunch of doctors sliced her open at neck and pelvis, slid rods down under her skin, and screwed them into her spine in places. It's sore. And the morphine makes her itch, and itching makes her wriggle, and wriggling jiggles the sore bits, and then it's more sore. And a cuddle might make it better but we're all telling her to stay still and not sit up.

We're all very stupid and she hates us.

But - and here's where I hope blogger on the phone doesn't shuffle the photos - take a look at her back in the blue tshirt, a couple of years ago. Take a look at her back minus the tshirt, 12 months ago. Consider the fact she has grown shorter, not taller, since then. And then take a look at the picture of her back behind the pillows currently supporting it.

That's quite a difference.

I hope she'll forgive us when she can get back in her chair and see for herself how she has grown.

It might take a lot of salty crisps though.

Tia

On her Birthday.

Butterfly Beth
So delicate, and yet
Your wings fluttered
To great effect.

Beautiful Beth
Your face serene
All peace and light
You showed what love means.

Baptised Beth
Washed in worship waves
Protesting when
The words got in the way.

Bereft of Beth
How can this be?
Broken no more, whole and perfect and pure.
But we break as we see you fly free.

The force is strong strange in these two.

Take one busy, active, intelligent six year old boy who lives, sleeps and breathes Star Wars. Add one determined eight year old girl who has no idea about anything Star Wars related, apart from the fact her friend really really likes it. I should probably rectify that. Maybe.

Anyway, it's not a particularly likely partnership. But somehow it works

 Biscuits and cakes get baked and sampled and smeared across the kitchen floor

 Neighbours and passersby are perturbed by the appearance of two Jedis; one who doubles as a Ninja without extra pay.

 The grass gets crushed into submission, to teach it to grow when the gardener is away.

 Miss Mog gets to sit and listen and giggle mightily all day long.

And I have the satisfaction of a small child fast asleep before half past six in the evening.

I'll spare the Ninja Jedi the photos of his stint as hairdresser, good as he is with a very girly purple comb.

And I'll spare the world the sight of the Doctors/Police/Ambulance/Hospital/Dark Side mission which seemed to involve bare toes, many arrests made with the aid of a bandage and a yoyo, and a largish box of pencils.

But a good time was definitely had by all. Friendship. Strange but true.

I'll leave tLP with the last words "Mummy, Mummy, he has left something behind. He really has left something behind, look Mummy, he has left behind ME."
Tia

Oops!

So I'm wondering, is this the 3d version of "This sentence is a lie?"