Friday, 27 August 2010

Day Off

Little Fish had a lunch date today; a friend picking her up after Holiday Club and entertaining her for the afternoon. Bliss. Mog and I could have sat and enjoyed the silence, but instead we went off for a very civilised ROSY coffee morning; three girls and two Jacks and lots of twitchy giggles between them. Fun.

And then lunch with just one of the Jacks plus his mother and another temporarily child-free friend. Proper lunch (well, paninis), with actual conversation. Real, proper, meaningful conversation. I'd say uninterrupted by spilt drinks, but I spilled mine; I'd hate for it to be a truly civilised mealtime. But no need to sort squabbles or answer inane questions about why ketchup is red or how it's really not a good idea to pour yoghurt on the table and how you cannot take that chocolate bar into the children's play area and no I'm not going to put you on the rocking horse I'm DRINKING MY COFFEE. Just peaceful, calm, conversation with two peaceful and non-verbal children unable to spill any secrets shared and quite happy to be listening in.

A stroll around the garden centre and then I think we blew our cover. Despite being active child-free, we went, not through the plants and clothes and garden furniture, but to go and prod the pigs and giggle at the goats. To try to provoke the parrot into saying hello, to watch ferrets squabbling over a drainpipe and helpfully bounce each other through the trap door, and to make plans for filleting a four foot sturgeon. To go all gooey over the guinea pigs and count the chickens (after they were hatched) and shudder over the less attractive sea life.

And I'm not quite sure how it happened, but I'm wondering what it says, that even on a precious day off in August (and these are rare creatures indeed), we choose the childish things. And enjoy them.


Wednesday, 25 August 2010

Because it bears repeating

Are you a carer? Something not quite right about the place where you work? Missing equipment, water too hot, lacking training? Don't sit on it - speak up and if your managers don't listen, go over their heads.

Are you responsible for bathing someone who can't bath themselves? Test the water. If there's no thermometer shout loudly (or buy one). If you're using your hands, take the gloves off.

Are you caring for someone and realise there's been a terrible mistake and the person you are caring for has been badly burnt? Get them away from the heat and under cold running water and keep them under that cold water until help comes.

Are you a parent or decision maker considering Supported Living over a more traditional Care Home environment? Fewer regulations and more freedom and a more homely environment is great, but bear in mind some of those regulations might just save lives, even if they're cumbersome and unwieldy the majority of the time.

Are you a manager? Consider that emergency first aid possibly ought to be a priority when training your new staff; if the unthinkable happens you want your staff to be able to act without thinking and act in the right way.

And are you hospital staff? Please review your policies and allow Foster Carers to be considered Next of Kin; it is just possible that the woman who cared for the injured adult for 7 years might know that adult better than the carer who has only been with her for a handful of days.


Monday, 23 August 2010

Special Kids Camp 2010

Two small ones very happily shouting at each other. "Hello!" exclaimed Mog's switch, fruitily. "HeRROoOoooooOO!!!!!" replied her friend. And on. And on. And on and on and on and on.
And how can this boy be this tall now? The first Special Kids meet up I went to, he was a teeny tiny little boy with delicate, wispy hair. He wobbled over and plopped himself on my knee to watch the sheep over the fence.
One of our neighbours.
And a worryingly increasing breed of subterranean cyberman masquerading as a tent.
You just know it's going to rise up in the night and assimilate all within its path.
Good times.

Not great times; we came home a day early as Mog was ill. And by the time we got home she was really not very well at all. But, a lot of medication, a good medicinal chest-beating, a night on CPAP and a reasonable amount of prayer, and she woke up (eventually)

Thursday, 19 August 2010

Wet wet wet

With side orders of cold, damp and soggy. English camping weather at its finest. Little Fish is delighted; I told her if it rained we could eat at the campsite cafe. And then the heavens opened and the weather forecast predicts more of the same for the rest of the week. Joy. Mog is less impressed; her new preferred horizontal position doesn't work quite as well in the driving rain.

I didn't want to come away this week for many reasons, one smallish one amongst many being the fact that I put my tent away dry after New Wine, and I didn't want to get it wet again. And now I'm hunched in one corner of that same tent, wedging the groundsheet over the sod cloths with anything heavy and non-electrical, mopping up a large annoying puddle in the non-sleeping room (and very thankful it isn't the sleeping one), wishing I hadn't upset the many men on site who didn't help put our tent up. Mainly because they arrived after us so couldn't.

Still, we're here, and we've spent a beautiful day catching up with friends we only see one year to the next. We've met new friends, seen children we've only met through photos, and eaten chips. That was about the plan for the week anyway; can we come home now?


Monday, 16 August 2010

Without God, the best we can do is the best we can do.

Been turning this sentence over and over since I heard it at New Wine.

The best I can do is never ever going to be good enough.

It's not good enough for Little Fish; she wants more of me, she wants me so close that she dribbles on my feet all night when we camp, she wants me so glued fast to her side that I can scarcely get out of her bedroom at home and close the door before a desperate wail calls me back in to tweak a strap or tug a sleeve or inch the duvet up her shoulders.

It's not good enough for Mog, who needs someone to interpret for her all day long, to push her glasses back up her nose and empty her stomach of bubbles and massage away the neck spasms and uncurl her toes and pick her nose and smile at her and stroke her cheek and tickle up her dimple.

It's not good enough for the people who phone, whether friends or loft insulation salesmen (really guys, do your research - ground floor flat!), who get half of me whilst the other half wrestles to silence a small child, or else locks herself away from the screaming child and then wonders what the child is doing out of earshot.

It's not good enough to win me any kind of place in Heaven, if getting there is going to rely on my own efforts, on me achieving any kind of perfection all by myself.

It's not all bad. The best I can do is sometimes quite good really. I can bake a chocolate brownie cheesecake whilst holding a small child and mopping a floor and listening to the radio and holding half a conversation with someone in the next room and keeping an ear out for the school bus and testing the fish tank and doing the washing up and writing a shopping list, and I only end up testing the dishwater for ammonia and sprinkling fish pellets in the brownie mix occasionally. At my very very best, I can even sometimes manage to get all three of us up, dressed, hair brushed and out of the door on time despite our carer not having turned up. And generally only one out of the three of us will be wearing odd socks or strangely stained clothing, and as long as that one is me and not the girls I'll take that as job done.

But it's still not ever going to be quite good enough.

Last term, after a year of trying to sort school transport, I stopped trying. I sat down, wrote a long letter to anyone I thought might be even vaguely interested, telling them exactly why I couldn't do the impossible. And after a year of trying to make it work, fretting over it not working, putting one child's life at risk in order to get the other child to school, we now have a solution. A solution which was out forwards within days of me stopping trying.

And I'm thinking about those days when the alarm doesn't go off, when the carer doesn't show up and the bus is late, when book bags have done a runner and the girls have both woken up with birdsnest hair, when uniforms are in the washing machine when they should have been hung out the night before, and when there's no pen to sign the permission slip and no change in my purse to pay the optional charge. And I wonder, I wonder, what would happen if, instead of me taking a deep breath and leaping into the fray shouting orders and trying to do sixteen things at once, I instead sat down quietly and texted God "I can't do this - help!" And then actually waited for a reply.

Trust in the LORD with all your heart and lean not on your own understanding. Prov 3.5

For I can do everything through Christ, who gives me strength. Phil 4.13


Saturday, 14 August 2010

Walking with Giants

Or possibly simply visiting model villages with friends.
Trains, trains,
and more trains!
Mini things to keep the minibeasts happy; time for the older generation to catch up on a year of the life unblogged. Enough rain to remind us this is England, enough coffee from enough different coffee shops to keep us going.

Safe journeys back to Argentina.

Thursday, 12 August 2010

Are you my best friend?

It's a constant question from Little Fish these days.
Hey, you. We are friends, you and me. Are you my best friend? I am one of your friends, wisely replied one teen last week.
But is my sister my best friend? She is my friend and we are sisters and I love her, actually.
Are you my best friend? We can play together because we are best friends.
Hey, do you want to hold my hand so we can walk together, cos we are best friends you and me. Um, Mummy, what is that boy's name again? We are best friends, we are.
And I love P cos he is my very best friend.

But I am not friends with you, Mumma. It is not kind to make me sleep in my own bed.

Last year's friends claimed Little Fish was the best hugger in the school. The year before's friends claimed she was the best kisser in pre-school. Best friends, in the world according to Little Fish, hold hands and obey orders. Amazingly, so far in life, she's not found a shortage of children willing to go along with this.

There are good things in Little Fish's world. In her world, if you know each other's names, you are friends. And if you are friends, then there is nothing more important in the world than holding hands, cuddling, and playing. I suspect she may have some of her priorities more right than the rest of us.


Wednesday, 11 August 2010

Something Missing

So New Wine was great. Camping in fields so dry that any rain was completely absorbed by the parched earth, disappearing without trace and making it possible (if your blog name is Little Fish) to roll all over the field again. A vast tented city with the bonus of hot and cold food and solid shelter always available. Lots to do, lots to see, plenty of people.

But something was missing.

And yesterday, as I stood in the pouring rain, having given my coat to a Nigerian Guide who was camping without one, incinerating fish in newspaper, baking cakes in oranges, and stirring embers under cheesy chips; watching myself turn from pinkish white to ash and mud coated grey and brown, the thick smutty smoke seeping into my hair and eyes, the rain gently soaking through my shirt and running down my back, dripping gently into my jeans, I stood back and thought "Ah yes, I remember now."
On balance, I think I could carry on missing it quite happily.

Monday, 9 August 2010

The Illusion of Depth.

Living with children with profound disabilities can provide a short cut past the social chit chat sometimes. Forget the weather (easy to do when you haven't been outside all week), forget politics (except how they might impact on various policies and allowances), and forget the regular child stress about my child possibly not having very many friends or maybe getting a cold or whether or not to allow your teenager to pierce her ears; we're concentrating on whether this child will survive their latest illness, that child will ever be able to sit upright again, or if the other child should have surgery which might help but might kill them.

It cuts through a lot of the clutter.

So we meet friends, online or in person, for cake or for a week away. And there are smiles and laughs and tears and we swap fears and we talk about stuff which terrifies a large proportion of the population of this country. And we know that death is not a distant stranger, and somehow in talking about it, by acknowledging the reality that we probably will outlive our children, we make that truth something we can live with. And then we do talk about the general life clutter too; we dip deep and we float about in the shallows of conversation, and we make another date, and we do it all over again.

And it's refreshing, and it is so good to be with people who understand.

And it serves to hide so much.

Did you know, for example, that I have been blaming myself for my daughter's death for the last three years? And before you rush in to say I mustn't blame myself, that there are in fact good and solid reasons why I do bear some responsibility. Did you know that I've been totally unable to forgive myself for that? And unable therefore to accept forgiveness from anyone else?

Did you know that I have been unable to praise God freely, with my heart as well as my head, stumbling about over my prayers (well actually, you might know that if you've ever heard me), that I have been unable to trust God with the lives of my other girls, despite blaming not Him but myself for Goldie's accident?

Did you know that I have been weighed down, browbeaten, by my guilt and shame over things both recent and long past? And that through all this, I have been calling out, apparently unheard?

If you did know all that, congratulations, because I didn't know it all myself.

I have just been on holiday with friends, with church, and with God Himself. Which is fairly awesome really. And God, and God's people, met with me, and didn't hate me for the things I have done. And I am forgiven, and I am loved, and this is a new day that the Lord has made. And that was just the beginning.

I think things just got real.


Friday, 6 August 2010

Time Out

Too much to blog about and too much not to blog and both at the same
time. So, rather than spending time which bits to write down, I
decided to step away from watching and concentrate on being.

This afternoon though it was definitely time to watch again. A silent
but windy camp, most adults at various seminars. Mog relaxing with her
iPod. And Little Fish attempting wordsearches and sudoku with a friend.

We'll be back home in a few days and then I'll try to put sonething
down here. But in the meantime, a brief hello from a very happy Tia
and family.

Much love to you all,

Sunday, 1 August 2010

Sunny Shepton Mallet

So rare I had to prove it.

So far, so good. Mild panic over missing poles, happily before we left
rather than after we arrived. Motorway closed, but we still made it
here by lunch time. A herd of young men descended to pitch the tent,
gallant women appeared with coffee and diversions for the girls, and
suddenly the mammoth pack might just have been worth it.

For those curious to know what we forgot, it was milk (ours not Mog's)
and matches. But with a self-igniting stove and coffee on tap just
next door we might just be set for the week.

It's a beautiful evening, Mog and C are off at evening praise, I'm
sitting outside the tent with a blissfully refreshing breeze cooling
my toes, all around are the sounds of fellow campers settling in. And
if it weren't for the fact that Little Fish is lying in the tent
screaming and sobbing about not being tired whilst simultaneously
being totally unable to keep her eyes open, life would be pretty



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