Intense Day

Up and down, up and down.

Went to see a brilliant friend yesterday and felt human and me again. Had tea out afterwards to celebrate Ian's new job - poor D ate so quick she filled 3 bowls with puked up mango lassi, dosa and EVERYTHING. Or so it seemed. Full marks to the waiter who came over afterwards, seeing the puke filled bowls, and asked if I wanted it boxed up - erm no. As Ian was back from the loo by then having cleaned D up, I was able to take the bowls away and empty and clean them myself. Poor Deborah it had taken us an hour of mind-crunchingly slow traffic to get there, most of which she had filled by screaming at the top of her voice in the car. I shivered and shook with the effort of not responding until I snapped and screamed back, and then sat in gloom and guilt and self disgust. Michael loved seeing our friend's daughter, loudly announcing in the back of the car that he had had fun. I was glad but also sad as Michael has to put up with so much screaming, so much special needs, so much sometimes. it's ok and will stand him in good stead, just we need to balance, balance balance so much.

Today Ian put the bookshelves in our shrine room. He put Dad's old siddur's (prayer books) up on the highest level. Looking through them I saw the names of the auntie's and uncle who had given him them for his bar mitzvah. I even found his bar mitzvah certificate. I even, even found a book inscribed to his mum from her father. I think my great grandfather was the son of immigrants. I've also written our Christmas cards this week (yup Buddhism, Judaism and Christianity in one paragraph) , one for my aunt Judith, Dad's sister. She's going senile, my mum last spoke to her a year ago, when her speech was confused and she couldn't answer questions reliably. Of course being that she is from my Dad's side of the family where the ASD genes run rife, no one is allowed to have/display any emotion, so any enquiries I've made about her have been ignored or answered piecemeal. So sad to say goodbye to someone before she is dead, and also very hard too. I will email my cousin again to say Happy Christmas (her children are aetheists but this one celebrates Christmas for her children's sake) and also to find out how her mum is. I understand that it's hard to talk about this stuff, so maybe I am expecting too much. especially if you're not in the habit of it and if not talking about it is your coping strategy.

Went out today - much more successful. Big slides and fresh air work wonders. Saw a dog ran over and killed on the way home. Nothing anyone could do, it had run out of a field by the side of a quiet road. Ian slowed right down as he saw it, the lady on the other side of the road didn't see the dog . It was a cocker or springer spaniel and it was zig-zagging across the road, straight into the puddle the car as driving through at the same time. It got caught up in the wheel mechanism and was circled violently before being thrown off. The driver got out immediately too distraught to speak, Ian rushed up and gave her a hug (she was ok with this). I came out of the car too, some neighbours were out - all stood with our hands on our mouths, too shocked. The neighbours didn't know whose dog it was Ian was talking to them. I gave the driver a hug and then held her hand as the dog's owner came running out of the field. The neighbours told her, the driver didn't want to to talk to her, but pushed herself forwards. It was all tearful, the driver was shaking, I was shivering and the owner was a real, stoic country woman. She was not going to show any emotion - the driver said she was amazing for not showing any, and the stoic answered that was going to go home to shake and cry - brusque but kind not nasty. The owner and river hugger, the dog's body got put in a bag for the vet to dispose of, the owner said she never have let him off the lead. I hope she's not going to go home and feel like a silly old lady for having done so - I once worked with a similar, wonderful stoic who once the drama was over, quietly got on with blaming herself. We got in the car and drove off, pleased everyone was being so terribly English but in a good way about it. Still shaken and sad for the dog though and for the old lady without her dog at Christmas. The driver luckily had someplace to go - she was visiting her father, as she was taking him some dinner as he lives on his own. I hope she was able to relax there and get over the first stages of her shock, she had a dog herself. She could remember hearing the dog go round the wheel arch and I suspect she will for a long time.

Then a horrendous bed time with D and talking to my mum on the phone and remembring such a strong feeling I had growing up. Quite simple really - not enough emotions for my mum's side of the family, but far too many for my dad's side. So confusing and still makes me want to scream, lots. My cousin on my mum's side has brought the kids Christmas presents, its bizarre, she's made no attempt to contact me since before Deborah was born - she phoned to tell me her son was born. She has no money but still wants to buy us Christmas presents as her mum did when she was alive. I wrote to her a couple of years back, to say do you want too, I'm concerned that you're spending money that you don't have and it's not as if we ever really see each other anyway? She never responded, so it's a weird sort of kindness. I mean presents are kind aren't they, but I don't get why she's bought them?She didn't last year and this year she turned up on my mum's doorstep with a bag full for all of us. It's fine if she want's too, but I really don't understand it. Archie (her son who is a month older than Deborah) turned up with a present that he really wanted to give to Michael. I'm sure Michael will love it, but I last saw her 6 years ago, when my father died. I think I've met her daughter once - she looked lovely, just old enough to pull herself up on things, and at the stage where my cousin was worrying about what foods to introduce next. I've talked about this with Ian and he looked slightly askance so maybe it's not jsut em, but who knows. She has a new boyfriend so maybe she's trying to pretend our family is more functional than it really is.

Part of the weirdness is that because of Dad's lack of emotions, Mum's family all thought he was really cruel and never really understood quite how mentally ill she really is. They certainly never understood that at one point he pleaded with the hospitalfor mum to come home, purely so he could keep me at home and not re-homed as he felt I would have been, men not being fit parents 40 years ago. Particularly, Jewish Aetheist, non diagnosed Aspie ones. So for years I've had to defend Dad to them, and for years I've had to commiserate about my mum to my dad's family. My dad's family are actually sympathetic as long as I have no emotion.

So I'm totally, totally confused, and would really rather no presents from any of them. I could particularly do without Mum announcing "I only gave Alex as much as I gave you" whenever she gives her money. I'm not jealous, it's my mum's money and she's free to do with it what she likes. I'm not sure why she's reassuring me, it's never made me feel anything other than it's mum's money to do what she want's with. I guess I do feel uncomfortable that mum feels she has to justify herself like that, but I think that's her business. I think it's a shame it's so difficult for people around mum to really sort out the truth from the not so true, but I guess that's because Mum has difficulties herself.

Christmas hey? Brings out the best and worst of us. Oh and first day of Hannukah today too.

Anaemic.

Well tablets definitely having an affect as that which had been very light is now rather heavy. Oh good. Thankfully have realised today that the low mood, headaches, fatigue and irritability are related and that maybe it's not a good idea to take my calcium supplement at the same time as my iron one. So many little things to juggle at the same time.

Had a bit of a rubbish morning, went to our local children's centre and as usual was too busy supporting D that I didn't have time to talk to anyone else. Due to the lack of iron I had a huge headache and was feeling really dizzy and irritable anyway, plus M kept me up last night from 12 - 4 and 5 -6 so was quite tired. I don't often get the chance to talk to parent's at these sessions, but I feel they all know me as the mum with the disabled child... Very lonely feeling and very sad as I feel it is impacting on M as the focus is always on D.

M in super whingey mood for a specific snack, so I lost my eye on the ball, hence D getting hungry and having a huge, huge HUGE strop over a tricycle. Of course it had to be at story/singing time when it was nice and quiet. Trying to sort D out I then return to find M scooting around the room on a beanbag, fun but bumping into people potential so felt embarrassed. D is still kicking off so lots of people are staring at me and I felt totally conflicted as to stop M or at least take D some place she won't disturb story time. Thankfully D really wanted to do what I wanted her to do (which had caused the strop) and leaving her to it was the best thing. As it was so public it was all I could do not to cry.

You can guess what happened next - one of the workers asked me how I was and there were tears. As I said to her, when you get given a diagnosis, you become your child's therapist, advocate, social worker, carer, the whole lot. The mothering role get's lost. Of course it's still there, and D wouldn't be doing so well in general if I wasn't mothering but even so. Plus I have to keep M in social situations too. The problem is, people only ever want to know what's happening with D's school status, and I do tell them, and they say, "Oh you're doing magnificently Rachel, you do so well!" This is of course a wonderful thing to say, and appreciated, but quite honestly I'd rather move on from being a mother of a disabled kid who is after all a child like any other. This is going to sound ungrateful, but I also hardly ever get a drink when I go to this group as I'm simply too focussed - I kind of wish the appreciation would include the physical too. But then I'm expecting mind reading, which is unfair.

The kids absolutely love this group, and talk about it for much of the week, so I feel we do have to go regularly. Plus it's good for D to be put in supported but stressful situations and good for M to see the other kids. I'm worried he doesn't play with them much though.

Sick to the stomach with all the bloody school stuff.

Drinking very dark cocoa in an attempt to assimilate iron and cheer up. Writing this has been very therapeutic though, as today was a doddle in comparison to many, many days we have had. I don't mind how things are at all, just maybe I need to acknowledge them a little more.

Bittersweet

Went to see the gynaecologist today. Quite an interesting experience, the scan showed all fine on the inside apart from chunky ovaries. Nothing happening to them, just they look quite big.

The gynaecologist listened to my 22 year history of hormone horribbleness, agree with me that I may not have had ME in my 30's, just that it was too much trying to have work and deal with my hormones. No reason for why my hormones are so bad, just either that I'm very sensitive to the ones I produce or that I produce masses. I queried conceiving so easily and he suggested that's because I'm lucky. I will agree with that. I agree with the rest too as well. I always tell people I'm too hormonal and maybe I'm actually spot on. It's only been since my periods have come back after Michael and after the coil them getting so much worse on a monthly basis, means I can observe the hormone effects. As these are basically from just before ovulation (day 12) and last until the last day of my period (day 10), I do literally only get 2 days off a month.

He's suggested I take the mini-pill and also that I can take 2 a day if the symptoms come back stronger after a few months as generally happens. He's put me on system so I will be phoned by the clinic in 6 months time to see how I'm getting on.

Happy with the treatment, but can't express how it feels that I could have had a career and been good at what I love. I've never really grieved for the ME years, I've always just got on with it, believing that's the best thing to do. There's never really been anything to grieve, and I guess in very many real ways there still isn't. After all there is no disputing that I took about 5 years out to get better and I did which was great. I've had children too which was never part of my plan, but of course life is much better with them. Got married too, never thought I'd find someone to accept me. Struck gold there.

In my late 20's/early 30's when I started to feel so bloody tired ALL the time I didn't realise the link between my hormones and the way I felt. That link has only become clear later on. It's always been confusing as other women always agree how awful PMS is and they say, but it's only for a couple of days isn't it? It's taken me years and years to realise they probably weren't in the main talking about 2 to 3 weeks of labour like cramps (had these in my 30's pre children too), and mood swings/fatigue a go go for the entire time too. Most women do a get a substantial break each month, it's me that's unusual here. So I can stop beating myself up for feeling so pathetic for not being able to cope with something other women seem to sail through.

So that's me. Quite sad about the loss of career thing, but who know's there's maybe still time to do something once the kids are in school. Really hoping the new treatment will work alongside the coil, after all I've not tried that option before. If not, at least now I'm in the system for the gynaecologist so I will be able to access that quicker. Finger's crossed.

All I need to do now, is work on my sensory issues and on getting D sorted. M is doing just fine, but the more I can get us out the house, the more he will see people which will be good. I may even have enough energy to start contacting my friends again, this has all gone for the last 6 months or so of hormone horribleness. But let's not be rash here ...

Currently indulging in chocolate and tv, but soon am going to turn off the telly and get the kids to the chemist. Life carrying on, one step at a time.

When we lost you,

you were there in perfect sight,

I was probably dressing you, or changing your nappy,

Making your tea, or brushing your hair,

Yet you were lost.

The hardest thing was that we didn't know,

didn't know that you were lost.

Because you were there in front of us

we allowed ourselves to be convinced that you were a difficult child

"They're all like that, with their funny little ways".

We thought all you had to do was change,

grow a thicker skin, learn to adapt.

We didn't know you couldn't,

didn't know that changing you meant losing you.

So we lost you.

Suddenly we realised

we knew we hard to find you.

We took off your uniform, but you were not there

We looked in your eyes, but you were not there,

We held you tight, but you were not there.

So we let you go,

let you go where you needed too,

put up with the scratches and the blood and the screaming,

We held you tight, looked in your eyes, hugged and kissed you lots,

and you were there,

you'd never gone.

Thrown and caught by the dancing wind

The leaf shadows flicker and splash on my garden fence,

A painting of a feeling, caught in one second

And blown away the next.

Month by month

Month by month and day by day,

Another label for your needs,

Another barrier for you to climb,

Another perspective.

So many labels in such a short time,

so many diagnostic criteria

but you still manage to laugh, be happy and love,

and loved, loved, LOVED very much too.

Defined but not cut-off

Part of this life, this great big world,

Part of the great going-on beyond

And here, right here, and loved.

Holding the Universe

Holding the Universe

When you feed yourself to sleep

and I hold you close to me

I'm holding the universe in my arms

A whole wide world unknown to me

Drifting off to sleep.

Pregnant Pause

Pregnant Pause

Twisting in the twilight of the womb

You came to be part of the world

Part of the world just as you are

with your hopes, dreams desires.

Part of the world, just as you are

with a brain that hinders your speech

hinders your smile, hinders your eyes.

A brain that demands perfection,

A brain that see's fear,

A brain that see's this beautiful world

In your own beautiful, unique way.

Twisting in the twilight world

I wish I'd done a better job

Given you a brain that craved love more

Craved eyes, and feelings

Craved touch and sounds and smells.

But this is to unwish you

and that just cannot be done

For you are yourself

with your frightened brain

your anxious eyes

and your ears that hear so much.

Twisting in the twilight world

You came as you are

My greatest teacher

and your own self.

Twisting in the twilight world

You became you.

Let the world outside welcome you.

Together

Together we learn to fight and rage,

scream and shout and bite and worse

and when I wonder about those words

well let's just say I heard it first.

When I wonder about those looks

wonder what is in your books

Wonder where you learned to fight

Wonder where you learnt to bite

and scratch and scream and hate so much

The mirror talks to me.

The reflection in your eyes reminds me.

Then we tickle and laugh and life is good

And now all feels as it should

A breath and I am grateful.

Grateful to you for teaching more about love than I ever thought there was to learn.

Such a day.

Such a day of weeping and wailing,

howling and hailing

emotional thunderstorms too big for our bodies.

The ranting and railing reaches the heavens,

the lightning of words screams round and about

whipping our heads with confusion,

scratching our minds with its talons.

But.

A perfect blue hexagon

No clouds in the sky.

All curled together, loving and laughing.

Perfection as we look to the sky

The day takes a breath, we pause and we laugh

We should jump, we should scream, we should all bounce high

- we are on the trampoline after all

The perfect blue hexagon as we look up,

Aeroplanes the only white in the deep blue sky,

Peace in an unexpected place.

Such a day.

coping with...

Not quite what you might think. Talking to a mum today whose ASD child attends the school to the pre school that D attended. She thinks they're great because they cope with her son. He has meltdowns at home that last up to 2 weeks whenever anything changes at school.

It took me a while to twig that actually I want Deborah's eventual school to do a hell of a lot more than just cope with. I agree, her behaviour is certainly a lot more challenging than most 4 year old's - but she has a good excuse, and it's not as if she's autistic by choice. I'm slowing down on feeling guilty for not wanting to home educate - the children are leading me in that one. Because of Deborah's language impairments I want her to be somewhere where the staff have specialist knowledge of how to support her and cherish her and not think she's inadequate, or that she just has to get used to it or any of the crap we had before. Michael is desperate to socialise, he had 11 year old cornered today in the park offering them imaginary chips and sausages, and every time we walk past a school or nursery , he demands to go. I've signed him up for next Easter, and he went very small and quiet when we were in the nursery we're thinking about - until he got outside that was. Then he loved it. So we'll see.

As for Deborah, I'm beginning to see that the confusion with my dad's behaviour is a good thing. Sure its daunting to be told that your child is disabled, that it will be life long and no one can currently predict outcome. All the signs are so far looking as if D has normal intelligence, she does age appropriate things which is great. So on one hand I have the diagnosis, the knowledge of her disability, the actuality of having a frequently very cross and extremely frustrated child - and on the other hand I have my family. All hugely intelligent, late developers, crappy social skills and often quite brilliant in their own way. Add into this mix, my understanding of the social model of disability (through my amazing friend Sharon Woodward, who died age 36) and I kind of feel quite upbeat about the whole thing. Yes the daily grind of screeching and chivvying is still there, but I'm moving away from the professional's viewpoint and developing my own.

It's also about my feelings about everyone's right to be just who they are -a closer development of a life-long interest. Yes its been tough having a bi-polar mum and an autistic dad, but it's prepared me well for this moment. I'm stopping feeling guilty for not realising earlier that D was so different - if you'd had my family, you'd understand :) But, because I do have my family, and am now working so hard to make sure D get's more support and understanding than any of us ever did, I'm hoping she will - well it's up to her. I just hope she's happy.

Goodness - back to period pains like early labour. So today was a write-off.

The self hating not in control but just so tired and cranky.

Read and remember

Well - that's an instruction for me at least. So the next time I'm attempting to save the world/ensure my children have stress free lives whilst being the biggest stress-source ever/ control time and space continuum as we know it so that Deborah's ASD will not be a drawback in anyway whatsoever, whilst not so secretly dealing with feelings of guilt, denial, grief and rather a lot of guilt, - I need to read this post.

Here goes - Rachel - relax, You are fine - this may or may not feel true. You are a loving mother, even if you feel incapable of this right now. Actually - that last, although not a nice feeling is ok in the larger scale. It's actually good to accept and listen to your non-lovingness, it won't go until you do. The world will be what it is despite you.

Rachel - your father very probably had ASD. His are the most important mental foundations that you have built yours on. If you are feeling highly stressed, it is most likely you have gone into default, scared mode, and these are the patterns you are using to try and solve whatever is going on. It won't. Dad was globally compassionate, but as an ASD person (which you certainly have many traits of, although for you the jury is out), he also feared it and was constantly trying to fix it. So are you Rachel. You grew these foundations as a response to your father trying to support your mum through bi-polar. There were decisions made that adults could and you couldn't. Trying to control it all by thinking that you are responsible for your mum's bi-polar simply by being born and then punishing yourself for every failure (how dare you fail when you have the gift of life and have ruined someone else's?) and every success (how dare you succeed at anything when you've ruined someone else life, you deserve nothing) - well it doesn't work.

My intensity of self hatred is really quite something. It kind of explains why I'm too afraid to succeed, fail and often quite ambivalent about getting out of bed. But - it's also ok. I just need to know it's there, remind myself of it's root causes and move on. Last night I was full of the worst thoughts, had been crying in desperation in the playground as I'd been angry at D and found her ASD traits completely annoying. Ian was really cross at me, and I was cross as we'd been away where we'd had full support by staying with family and it was so blissful that it was the intense fear of coming home that triggered it for me. Deborah has been getting really challenging recently, pinching and drawing blood every day for over a fortnight has been particularly hard. Coming home was hard as she's stopped on holiday when we all relaxed and I didn't want to be so stressed I started her again.

But on the upside - we now have a specialist SALT visiting once a month who will help D communicate with us and vice versa. She's particularly keen to work with D's anxieties. Thanks to the ed psych pushing, we will also have the local pre school teacher counsellor visiting fortnightly, and I've arranged for a worker from the local children's centre to come fortnightly to encourage play skill - both kids will benefit. I'm also talking to the gp soon to see how they can help and I'm hoping to get a Home Start person soon too. And we have an OT appt in September, plus there are ways to access things to start now, and the SALT will be sending me communication stuff to use at home, so since 31st March this year (when we got the appt) - well I've been busy.

As for the rest - just remember, breathe out, let go and walk on. Be Rachel.

Too awkward to discuss

Well face to face with anyone within Deborah's hearing range. Would be totally unfair. But I have no idea of what to expect from her, as such I am constantly comparing her to other children of a similar age and end up really disappointed. Isn't that a simply awful thing to think about one's own child?

She is so beautiful, and so similar to me and my dad. It's really hard to know how to react to it all, I try to just be with it, but there is so much stuff that trips me up. After a rather thrilling car ride, when I was stuck in the back with a reluctant daughter who did not want to be in her car seat and who really enjoyed all the attention she got for trying to escape - 2 weeks ago, my bruises are still healing. It's the karmic nature that's tripping me up, the physical attacks from a close female relative, too similar to what I had with my mum. Sure that's apparently how it all works, Rev Olwen once said all these cycles come round again and again but it's tough. So many of my reactions are based on things long passed.

It's also tricky as I simply don't know what to expect and I don't know exactly where the tantrums are coming from. Plus she, like many autistic people, is almost super sensitive to emotions, more so than her brother. It's odd, she doesn't understand the outright expression of emotions, but the subtle feeling of it can have her in turmoil. Last week of PMS was fun for both of us...

I'm trying to find more support - home start have no available volunteers but have asked them again. NAS do volunteers but they only come out when your child is over 5. There's plenty of online support and phone lines, but I cant guarantee I can actually talk on the phone so I tend not to use those. I do use an online forum but find my social anxieties are sometimes a little triggered. The local educational psychologist is doing a brilliant project, but her support will be coming to end soon when she will pass me over to the local pre school teacher counsellor to do Deborah's statement. This would normally done by the school that the child is in, but obviously Deborah is not in the education system at the moment. The local special school would be brilliant for Deborah as she would get SALT and OT as part of her lessons which I think she really needs. But to get there, she needs statement and of course she's no longer in the school because of how traumatic it was for her. So fingers crossed for that one. The special school has a family support worker and an autism support worker, I'm trying to access these at the moment as well as someone else who advises on continence.

It's all rather a lot to do.

At the same time, Michael is coming on leaps and bounds, wakes at 4, loves people, chips cbeebies and trains and has the most staggeringly deep voice. They both need nurturing not a mum freaking out about being 40, and feeling tired and unable to study and completely overwhelmed by the whole disabled thing.

Tried out Kalms last week, they were very effective and also compatible with breastfeeding. They even contain hops which boost milk production. Because they were so effective I felt relieved I wasn't "seriously" depressed and resolved not to take them. Bad mistake. I've now decided I will take them when I am pre menstrual as they do work and as I only need a 3rd of the recommended dose, well it's just fine. I really should get over myself.

This bit is really quite hard. Need to remember it won't last for ever.

Funny Old Year

Nothing too deep, but just realised today it's been an odd year so far. We may have known D was autistic, but it wasn't confirmed till March. We weren't expecting to get the Semantic Pragmatic dx either, and in another letter from the Paediatrician she's mentioned sensory processing difficulties. We knew about those of course, as that's why I wrote to her asking for an appt with the occupational therapist, but it seems so much more final on paper. All the stuff with pre school and now post pre school, and trying to decide where D should go to school, well it's lot. Coupled with the very basic fact that Michael has only just started sleeping through until 4 most mornings and then waking at 6 and loosing my beautiful friend Jason (who would have vomited if he'd heard me say that) well it's been a funny old year. So apologies for all the whinging, it could have been a lot worse and there's nothing there, that isn't kind of pretty every day really, but even so. Drinks for all, we near the equinox, feel the solstice fires burning or whatever floats you boat. Or doesn't, those burning fires might be a Viking and all.

Following on

Just posted this elsewhere in response to someone else's post, but cut and pasting to here, so it sinks in a little more:

"Sometimes, for me, the closed door can be a useful metaphor. I'd decided I was going to have an HIV test many moons ago, and went to see the Tibetan Buddha statues in the British Museum. The display was in the process of being refurbished so I could only see their backs, at first I felt cross and let down. Then I realised that it was because this bit I needed to do on my own steam so to speak - the Buddha within I guess. Although that's duality but I think you'll understand what I mean. So closed doors are sometimes helpful.

I've been meaning to email you anyway - Deborah has just received a diagnosis from a paediatrician as being somewhere on the autistic spectrum, and I wanted to let you know. Michael is definitely not, but both full of life, and in the main, happy. Michael's naming ceremony is soon too.

Writing the above bit about closed doors has been a useful experience, yesterday I had a truly terrible day with the children. Whenever they screamed, I did and it carried on for most of the morning, with few breaks. Luckily lunch resolved things happily, and the afternoon was peaceful. Part of it is my feeling of being unsupported and shocked and dismayed after Deborah's diagnosis (my Mother in Law and Ian, and others do support me). Another part is that we're all ill, and I think I have a chest infection too. But its the same experience as seeing the Buddha's from the back again - maybe as well as being propelled to find my own strength there is something about the backbone of the Buddha that's in there for me too? So closed doors or backbones, I guess it's how they are for you too that's useful."

It's confirmed - Deborah is autistic.

Huge Letting Go

Drank so much coffee over half term I was completely wired. And more than a little psyched. As for the bundle of nerves that used to be stomach - well lets not go there. Actually that particular knot of nerves has been there on and off for hmmm about 4 years? Although the pre disposition for it was always there.

I've been looking for ways for it too stop ruining my life but with little success. I have no doubt it will be back either. But for right now, it feels good. Simply because last week we had shocking issues getting D to pre school - well I did, I dressed her one day, and 2 days running took her screaming self the entire length of the village just to get there, OY what a horrible thing to do. Choice worked but we still had other tantrums which have been huge and horrible and distressing for all of us. Today she has a cold so is home and this is probably the reason for the screaming, but we've decided we're not going to push the issue. If she doesn't want to go, so be it. If we end up home schooling so be it. Relieved.

Just realised why it feels so wrong

Because it is. Nursing M back to sleep and holding him with all the love of the world in my arms I realised that it's the not same with D anymore. It's not her fault, it's my huge, huge fear of what's "wrong" with her, what I've done to make it worse, not done, should be doing more of etc, etc. So every single one of my actions is subjected to this intense internal scrutiny - because basically it's ALL MY FAULT.

Good to realise this and move on. Now maybe we can have lazy days and just enjoy them.

Birthday party

We had one today for the children. It was ace. I'm exhausted but thrilled.

Scraping back the layers

Inspired by paintings...

If we didn't prize paintings for the colours,

Instead found the joy in scraping back the layers,

excavating deeper and deeper until we found bare canvas

would this be like preserving old buildings?

old ruins, old foundations?

where we have to scrape back, layer and layer until we reach rock or earth or bricks?

Each layer mines deeper and deeper into our souls,

Into each part of our culture,

incising away layer of our feeling of self.

Is this why old things and creating are so important?

Because without we'd have no way of recording that internal process

of building?

Without that would we know who we are?

Would that really matter?

When you died, then so did I.

Not all of me,

just a small significant part ,that I never noticed was there, never knew

But now it's gone it feels like oceans.

Feeling guilty about feeling guilty and then getting angry doesn't help anyone. Horrible day.

One day I will stop trying so hard,

I don't want to miss your childhood in feeling guilty,

Don't want to miss you growing, becoming you whilst I shout!

Don't want to miss your baby fat legs,

Don't want to miss your chubby fists, your love, your smiles,

Dont want to swap them for anger.

Dont want to eat ashes when I could be chasing for baby kisses,

delivered with an MMMMMMMM and a MWA!

Dont want to miss out

Bad days and guilt feel so final as if the earth has come crashing down. I wish the bit of me that was still grieving about Jason, could just let go. Maybe I have to just let all the happy in around it - I think that's probably the way. All been so ill over Christmas and all ill again a few times since, plus worry worry worry about the ASD thing (despite the fact that as D is actually ill again this week, she is doing really well) - yes I need some happy in.

Sometimes it's hard to remember how much time has passed

sometimes something happens to bring the past tumbling back

then I walk with my feet on two floors

the now and the then.

It's a very odd feeling and I feel I may be going slightly mad

but its ok, the madness of not being tied to the present being a single thing

but rather pregnant with possibilities, a million different things

and of course, just the single fact of it's existence.

So it is a single thing after all

and its folly to think otherwise

but it's useful to look down at my feet

and remember where they have been

and where they are going.

A door is open and shut, all at the same time

A wound is bleeding and healed. all at the same time,

The tree is growing, yet burns in the grate, all at the same time,

We are born and yet die, all at the same time.

After we die we shatter and scatter

Becoming the fragments of memories, snatched pictures, half forgotten conversations,

Floating in peoples minds.

We fade into their memories' DNA, shaping them and their children

In turn shaping the world.

This is our shining soul, our human imortality.

http://www.careers.brad.ac.uk/feature/jason/

This thing that should be about death and feeling distraught is changing.

Like walking under trees in rain and complaining about the wind and the rain and the noise

and forgetting that I'm there, under the wind and in the rain and listening to the noise

And that just being there, right there is enough.

Jason dying has changed so much but left it the same. It's lovely to be in touch with friends I've not had contact with for years though, his final gift in a way is love. Can't undo his karma but part of me would still like him back even though in the bigger picture it's sort of ok. Well it's beyond me saying it's ok.

Grumpy day today, but the kids were still loving. My double standards amaze me - I expect them to be calm and not cross yet what do I do when I'm tired and hungry? Have to work on that one. Probably important not to be too self-judgemental.

Reed bed rippling in the light,

is that the wind blowing

or a soul parting the leaves as they pass by?

Well today I found out Jason wasn't on his own when he died. That seems good. He phoned his folks on New Years Eve as he felt unwell, who took him to their house and called the emergency Dr. They then took Jason straight to hospital, where he either fell unconscious or was sedated. It became apparent he wasn't going to wake up, then his parents called friends of his to say goodbye. A mutual friend contacted one of these friends (Jason's ex) and kindly told me how he died. It seems terribly important to know how he died - and its a huge relief that he wasn't afraid and alone when he died.

People have been immensely kind today and I need to not overlook this in my grief. The gift of simply being here to feel this pain is quite something - I've been so overwhelmed with it all that I've quite forgotten that.

So, Louise was kind in immediately letting me know how Jason died. She phoned on her way back from meeting Steve. Greg was kind too - he owns a local coffee shop and is coffee intense! We'd been talking to a mutual friend about his autistic children, he mentioned this to us and his whole demeanour changed. We went to his shop on Christmas day, and he held my daughter's hands as she was cold and recovering from an awful bug. We've not had the easiest relationship in the past so this means a lot. It's not a tragedy to find out your child is autistic but it needs adjustments and he was talking about that. It's good to talk to someone who has trodden the same path. We also spoke to friends of ours - a gay couple as it turns out. For some reason, because Jason was gay, it was somehow healing and life affirming. Marc's mother died some time ago and I was talking about Jason. I don't seem to be able to stop, but Marc was saying some really poignant yet pragmatic things. Just that dying is inevitable and that for some, dying in their prime as opposed to lonely in old age might be preferable. Plus he urged me to do something on the day of the funeral. We've decided not to attend as it's a long way and I would be quite upset which wouldn't be great for the kids. Plus we can't afford the associated costs. I am sad about this but myself and Marc both came up with the idea of perhaps burning a photo or something.

Letting go - I've forgotten about this. In the past I've relied a lot more on this but it's been hard to do now. Another reason why is I feel guilty for being here now Jason is not. It's only fleeting but its there. Guess it's a version of survivors guilt - he was younger than me and I feel protective.

The world still turns after all. Wish I could go to the funeral. Thinking of releasing something down a stream or maybe going to the Priory although as Jason was a Christian not sure how that sits right now.

Living in the Past

Ok - today has been a good day. I have sniffed at a lot of people that " a very good friend of mine died etc etc" and not dissolved into a heap of tears. This has been a good thing. Plus I haveea actually started to feel slightly cheerful. The unadulterated wallowing although painful is obviously the right way to go.

Part of me is now back at being in my early 20's. This was of course when I saw Jason regularly, especially our tome together working in Manchesterl Museum. Its a slightly trippy experience - most of me is with the kids, arbitrating, feeding, nursing etc, just a little is wandering around, cataloguing stuff early 20 years ago. I loved that collection too! I loved sharing it with Jason as well. I also remember so many kindnesses he showed me, moving me up to Leicester, taking me shopping oce in Manchester when I'd just moved there (I've lived there several times, I don't remember which one) his general attitude that he was there to help. I remember walking into the main gate of the museum to the stores behind, him making coffee at break times, him charming the extremely wonderful Prof Rosalie Davids who I was too scared to talk to. It was a good time - and how much did I enjoy that work?! So much!

Not sure what's happened to all of that now. Not sure if it's lost underneath the pile of leaving job, being ill with ME, recovering and then children or if it's still there. Certainly the 20 year old me would be terribly surprised to be a full time mum, but the essence of me being me and carving out my path in my own style is still there. Not sure if it's even important or not.

Sunlight streams in my memories.

Somehow

this horrible horrible thing is going to be a blessing. I don't know how, I suspect it will be one of those things I don't get for years and years and look back and it will click. Jason was that sort of man.

I think this is so extremely hard for the following reasons:

1. Everyone else I've know whose died was either older than me and/or long term ill so there was't the same shock element.

2. Jason was a year younger than me (his actual birthday was 364 days after mine) so this is the first time that my entire life has encompassed someone else's.

3. This brings me back to being nearly 40 and feeling the need to seize the day.

4. This brings me to needing to see a professional about D.

5. When I was at university, it was the first time in my life that I was actually happy. I believe I spent the first term at university quite down simply because I wasn't expected to be caring for and being depressed about my mum. It was a huge learning curve to be happy.

6. The friends I formed there were in a way the bedrocks of my future life. The previous bedrock type friend was Sharon who died a few years ago (2003) - but she had muscular dystrophy so I was expecting her life to be shorter.

7. Jason was one of those bedrocks and he's suddenly and completely gone. We'd made contact over the summer and talked briefly on the phone since and it was just the same, just the same friendship.

8. We spent a lot of time together in Manchester Museum working on a project cataloguing the Egyptian collections. We got closer as friends.

9. The whole thing about Facebook is that it means you can suddenly keep in touch with people that you haven't for years - Jason was one of these. He was a prolific twitterer so he was very much there - even if he was so techy I couldn't understand half his posts!

10. He was a genuinely special person whose Christian faith and his ability for deeds to match his words was amazing. His faith alone and his way of interpreting it was inspiring.

Wish it didn't hurt so much. Such a wimp!

I turned my face to the sun,

I watched as you said goodbye.

I felt you leave this world,

and move onto the next.

The streaming sun,

knows no difference.

RIP Jason

One of my very best friends from university died from meningitis over the weekend. He would have been 38. We met up with him briefly over summer for tea but the kids were running wild as they'd been in the car all day so we didn't really have chance to talk.

Heatbroken, metta for Jason x

Back on the merry-go-round

D starts pre school on Thursday (should be Wednesday but she has a party on Wed afternoon so a day's grace is necessary). We were all very ill over Christmas so leaving the house was not really an option. When she starts back she will be too tired again to see anyone. So given that the socialising at pre school knocks her for 6 - well I'm glad I know she has at least one friend there. So hard for all of us.

Not really a point to this, feels dreadfully confused and narcissistic. Cabin fever.