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Hmm, better than Kermit's nephew I suppose.

Post 21

Sitting on the stair

I wasn't sure myself. Should do now anyway.

I was glad that you hadn't.

James the VIth is said to have owned a very large pearl that was found in the Ythan. So I looked for oyster shells in the midden but without digging around. It felt like destroying evidence to dig around, though the next storm will wash more of it away.

Blows dust off

Post 22

Sitting on the stair

Lot of life's too short in that last post over other place.

The place where I keep account of the beans is a hospice. Don't think I've said before and don't want to state it over there. There aren't that many around and I like to let off work frustrations there occasionally.

It's a very positive place but every now and then it yanks you up short. Like yesterday evening, leaving work, there was a young man sitting on the grass in the gardens leaning against a tree. He was having a smoke and a time out I guess. The tree was between him and the buildings. He had one of those plastic name bracelets on.

Some colouring of thoughts there too I think. Writing another encyclopaedia is no way to spend a life. Writing things that open minds, give new experiences, touch hearts, turn dull metal into glowing ore, that's not a bad way to spend a bit of life.

Blows dust off

Post 23


Hey, you found it where I couldn't. I never realised that the subject title was so...minimal.

You are very wise, you know that?

Blows dust off

Post 24

Sitting on the stair

Wish that were so. Feels least so over here.

And I missed checking this thread last night while messing with Joddan.

Minimalism - thought that would attract least interest from any passers by, should have been a small h though.

Blows dust off

Post 25


Is sosmiley - hug

Blows dust off

Post 26

Sitting on the stair

smiley - hug Is not.

Proving point I think. Would you say you were stubborn?

Blows dust off

Post 27


No way. And I'm not talking to you until you withdraw that remarksmiley - cross

Blows dust off

Post 28

Sitting on the stair

Oh smiley - smiley! In that case, since I think it's true, I withdraw it immediately.

Blows dust off

Post 29


Actually, in order to be stubborn, you have to listen to the other person, in order to disagree with their position and stick to your own.

This means that as long as I'm not paying attention, I'm obviously not being stubbornsmiley - nahnah

Blows dust off

Post 30

Sitting on the stair


Blows cobwebs off

Post 31

Sitting on the stair

Your 'I've been there' stuck with me the last few days, I just wanted to say.

Also, your not being cut up reading that entry. I accept that, I do, except... Thursday evening was difficult with J. After he went to sleep, I was...I don't know... but thinking how cutting up it, that evening, other stuff, all was. Had been. Is, actually. And remembered what you'd said and thought 'yeah, right'. These things are true and untrue at the same time.

Nearly logged on here Thursday night for that sympathetic ear you offered. But was too tired for sentences and anyway, I don't feel I need to post for that.

Friday, Saturday were good. How n and m do this 7/365 though... I'm pathetically shattered after three days.

Pulling my socks up now, to go deal with spider leg bits and make tea.

The edible kind of course, not the undrinkable kind.

Blows cobwebs off

Post 32


I'm going to reply at length later - I found this while on the run this Monday morning.

Just to say, my qualms on that other piece were really because experience tells me that own catharsis might be others' pain.

J in my thoughts. And for you and those around him, remember that after you've given all you can, never regret not giving what you couldn't.

Pinsmiley - smooch

Blows cobwebs off

Post 33


Damn that was supposed to have been a smiley - hug

(OK, as a special treat you can keep the other...)

Blows cobwebs off

Post 34


More time now.

I was thinking over this today, and I first of all decided that there are two separate strands here. I thought "SotS is in a real situation and one that I can relate to, whereas that other Entry isn't real to either of us".

So I came home resolved to talk about just the real strand of J. But do you know, I'm suddenly not so sure? There's something that Ian seems to be wrestling with that might trouble you, too.

I overlooked it because it's an aspect of your position that I've never faced. When it's your own child, you don't contemplate how much you should do, because it's your responsibility to do it all. With hindsight, I can now see that this is a simpler position than I recognised at the time.

I took it upon myself, not consciously but still actively, to make sure Caro didn't get frazzled and that the other kids didn't miss out too much. So I spent a lot of time with Alex, taking the load off others and relatively able to switch off myself. If he was shouting all night, I'd get him up, sit us both in front of the TV and just doze a while - that kind of thing. I know now that it worked because I did what I thought was enough, even though Caro and others never would have stopped at that. Nonetheless, those others were still relieved that I'd taken charge.

Thing is, I really don't know if it would have worked if I hadn't that direct parental responsibility. Caro too. If you get involved, where do you stop? Do you even get pulled into a mindset of caring for parents as well as child?

I think I know you well enough to see that you are always going to be selfless in these things. You would sacrifice a lot if you thought it might help, wouldn't you? But it sounds as if you gave too much this weekend. It took it out of you in a way that left you less able than before, even if that setback is only temporary. Such an experience suggests in itself that you need a rethink.

There's nothing that teaches pragmatism quite like special needs. As someone who helped us a lot put it - you have to do what you know you should, but that means you should also know what you have to do.

It's hard to say much more without knowing J and his circumstances better. I just want you to know, we can discuss this as much as you like, however you like. I'm apart from that whole world now, except in the one sense that I want to help others to live in it using the positive discoveries I made in my own time there.

Pinsmiley - smiley

Blows cobwebs off

Post 35

Sitting on the stair

You with Alex in front of the TV - I see m do that quite often. It has an 'I've got him now, you don't need to worry' feel to it. That actually seems a pretty good thing to aim at.

I lost some sort of balance this time, I need to find it again. You've given some things to think about. The caring for parents - of course. She's my sister, I hate to see her as tired as she often is. Not physically - they're both super-fit - that's what the triathlons are about. But... maybe focusing on that isn't best. Make sure J's ok, the rest follows? Or is up to them, perhaps.

J being ok - I want happy though. He doesn't do happy as often now. He's more fragile - if he misses any of his usual drinks for a couple of days he's verging on being dehydrated. There seems little margin. Not really eating enough either at present. Not since just before Iceland didn't happen. His Doctor changed one of his medications then, and a range of problems flared up. The keeping his food down one persists. He gets such enjoyment from food, n and m, and J's Consultant all want to keep away from feeding by tubes.

[You know his eye specialist still won't say definitely that J can see. Ri-ight. Friday tea time, he had a yogurty thing for pudding - was enjoying it. He'd had a large chocolate brownie mid afternoon so I wasn't intending giving him any more chocolate. He caught sight of the chocolate square hidden (I know he can see) behind a coffee cup. His face lit up, he refused any more yogurty stuff - you should have seen the utter delight when he got the chocolate. Can't see indeed. What he won't see is boring plastic toys held in front of his nose.]

Thursday evening, though, he refused to eat or drink anything and was obviously having bouts of pain. I let that get to me too much. I don't really know how not to. They're trying to find out what's wrong, but it seems to be taking an age. I worry that they'll just settle into a new, not so good, routine of coping. N is worried that it's simply a worsening of chronic problems. They can only get worse.

I don't like cataloguing all J's problems. It pulls all the focus onto the bad stuff. The grit rather than the candles. 50 years ago a child like him wouldn't survive a couple of weeks - now, medical knowledge developing the way it is, who can say.

Pin, what's good talking to you, is that you put J at the centre. As my sister would, I realise. I tend to put J, n, m and k at the centre. Friends here (RL here), that I talk to - they tend to put me at the centre and that ... misses the point.

I could easily take my mind off this, get back into my routine - I don't want to. I want to work out why I'm off balance and fix it. I told n it would be easier to look after J more often than less often. It would be - you need to spend time getting in tune with him and how he is.

You're a good sounding board. And a good giver of hugs. When you don't hit the wrong button. I got lucky - could have been that guy with the leer waving the pint about, or even an accidental teacup...

Thanks Pin.

Blows cobwebs off

Post 36


The leering pint-guy is really OK when you get to know him.

Anyway, good philosophy, working it out rather than shutting it out.

I'll mull all this, and maybe say some more soon.

Take caresmiley - hug

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