I've been thinking a lot lately of the fact that when life runs smooth(er), I find myself not writing so much.  As though happy times were less worthy of recording than rougher times.  And I was thinking that I must try and redress this if only as a way of retraining my mind to find the noteworthy and funny in happenings.

So tonight, I am sat in my rather lovely and cosy sitting room watching three grown-ups and two animals make sense of the new.  It's quite funny to see how the humans are almost more aware and cautious of the two animals' welfare than each is of their own.

One animal is Nimbus, our cat.  A fairly large but placid specimen, Nimbus runs away from trouble rather than facing it and much prefers his own company to that of others.  To his credit, however, he does clearly sense distress in his people, and will often be found on the bed of the child who is most in need.

The other animal in question is Sox, my in-laws' new dog.  Compared to Nimbus' 5 years, Sox is only 7 months old.  A funny little mongrel, she is small and black with white Sox.  She is full of energy, very loveable and clearly a bright sparky little thing.

How frustrating that words fail me!!  The "big"ness of Nimbus, the new noises that emanated from each of their throats.  Even sweeter and funnier, the concern of all humans around them that Sox should be kept held of, that Nimbus should get the message that this is indeed his territory.  It was all lovely, and funny and endearing!  And stirs up thoughts as yet unclear concerning relationships in general... I will have to keep my heart and mind open and wait for them to crystalise.

Nimbus having left the house earlier has since come back to eat.  He is happy in the knowledge tha tthe dog will not go upstairs.  After some hilarious staring, Nimbus has now changed tack.  He saunters into the sitting room elegantly, looking at Sox as if to say, "You, thing, you are held.  I, Nimbus, cat, am not.  I will now sit calmly in front of you and lick my nuggets (Tom's preferred word for his privates!).  I, Nimbus, cat, am not afraid of you."

Sox, being a dog and a young one at that has kowtowed quite happily.  It has to be said, however, that when Nick looked at the cat and declared that Nimbus would clearly be quite happy with a dog in the house, you could have seen sparks fly from that cat's eyes!

With a giggle in my eyes, I bid you all a goodnight, and wish you the words to share the good as well as the bad.

I newly have an amazing woman as a friend on Facebook.  A little pocket of the world is filling for me with these awesome girls, ladies, warriors, women.  I only wish that that little pocket were closer!

So the other day this lady who is so often full of grace and patience confessed to having lost her temper with her children.  Her grief and shame bled off the screen and she pre-empted our comments:  that such a thing is only human, that the children would shrug it off, that things would be better the following day... that maybe she had been provoked and that children need to know and understand that they have gone too far.  For once I did not comment... I have so many thoughts whirling around my mind concerning anger that I wanted her words to allow them to make their way onto paper.  I also wanted to respect her ability to share a sad moment with us and respect her request for quiet.

That same respect for her compells me to try and spin the jumble of fibres in my mind into some kind of yarn.  I cannot hope for a beautiful result that might make a delicate pashmina, but if my thought yarn could result in some soft socks to warm cold toes.

For as far back as I can remember, I have feared, even dreaded my anger.  The loss of control that I felt could overcome me and hurt others was enough in itself to enable me to reign in those emotions and carry on.  I was far from being a perfect little girl, but by and large I was quiet.  I remember clearly ensuring that I must not hurt my sister, however awful she was because I would either get into trouble or lose control and really hurt her.  The howls that followed any little scrap were testament to her understanding of a parent's response to cries ("Benedicte!  Leave your sister alone!!!").

As I write this now, I am so careful to choose my words.  I am slowly coming to understand and realise that anger is not a "negative" emotion.  That emotions are simply that... feelings that well up inside us as a reaction to circumstance, thoughts, the people around us that we care about.  For several years now, I repeat to myself that "behaviour is communication" when I witness and endure the awesome anger and sadness of three children who daily wrestle with a life that most adults would struggle to cope with.

With a lot of help from friends, therapy and the biggest teacher of all: life, the idea that emotions are as normal and neutral in intention as a heart that beats or a leg that rears up in response to a reflex point being tapped has begun to seat itself deep into my soul.

Sadness has been easiest for me.  As painful as sadness can be, I can hold it in me and keep it safe.  I can allow myself that emotion and recognise that it is a part of me, that I am allowed to feel it in all its intensity and that I can also find a place for it deep inside me and continue to live in its company while not being overwhelmed by it.  Anger is much harder.

While sadness lives inside me, anger wants out.  Anger held become so destructive as to leave its host quite emptied and weakened.  By the time my anger had done with me, I no longer recognised it as such.  It mutated, changed, altered to something quite unlike its fiery beginning.  By the time I allowed myself to fall of the cliff that was my life, it was like a stalker.  Quiet, so close to patience because of my life with my children, that it took me a long time to realise that anger had a very big part to play in that fall.  Not least because anger had such a big part to play in the fact that I lived my life as if holding on to the edge of a cliff by my fingertips, always refusing to give up and let go.

I still do not know how to manage anger, how to live with it and let it go, transformed.  But now I can recognise it, and if I do not welcome it, I at least acknowledge the validity of its existence.

That said, I have clear social and emotional boundaries and I am able to contain any anger in situations where outbursts would be unacceptable.  Nor do I feel it appropriate to release that anger in reaction to a child's misdemeanour.  After all, "behaviour is communication".  If my child's behaviour is challenging, then in nearly all cases it is because that child has been unable to communicate a need, or understand another.

My three children all have great communication difficulties.  They also lack those taboos that most of us grow up with: the fear of adults and authority, the "knowledge" that some things simply cannot be said or done, the shock that comes when a boundary is crossed without permission.

My children have also lived lives filled with pain, both emotional and physical.  They have had to fight for attention more than most due to extreme circumstance.  A little boy with cancer who took his mother away from his brother and sister, whose mother could not be by his bedside each day he was in hospital.  A little girl who learned to wash and dress herself because Mummy had to be at hospital or managing big brother's major meltdowns.  Another little boy who was regularly overwhelmed by life, but whose mother was constantly in and out of hospital with baby brother.

Anger thrives in circumstances such as these.  Indeed why should it not?

And anger in circumstances such as these is a violent and untamed monster.  Shouts and screams are at some point joined by name calling and gestures mimicking attack.  And eventually, when circumstances such as these do not subside, shouts and screams are not enough and physical attack and violence pour out.

Many call out "unacceptable" and "he/she must not be allowed to". 

I ask you, who is most at risk in these attacks?  Mummy who is bruised and battered both on the outside and in her heart?  Or that child who has been overtaken by the monster of  anger?

Zack frequently was unaware of such incidents having occured.  He once recalled one saying, "everything went dark.  I could just feel how angry I was and how I wanted to hurt you.  Everything was black, even the sky was black, but I could see.  I could see you, but not with my eyes."

Kesia seems at times to feel the anguish of hurting me even as she is launching herself at me.

Tom says simply, "I can't help it".

These are not bad children.  Nor is their anger bad.  For Zack, anger at that time came from the terror of not knowing what lay ahead for him at a time when I could not homeschool anymore and we simply did not know what would happen.  Kesia sees her world change at a pace that she cannot follow, and her confusion eventually overwhelms her.  Then the slightest mishap leads to anger.  Tom lives with the increasing understanding that he is "not like",  without any understanding as to why.  Sadness is a big presence in his life, so big that it translates to anger.

My question to the universe, the world, you is this: if we are together in the feeling that anger is a legitimate emotion and that repressing that anger is not a solution, how can we release that anger?  And how can I help my chilren release theirs without hurting themselves or others?

This is my yarn so far.  I am not a spinner... I love, admire and respect the work of spinners of all kinds who make such beautiful yarn.  My yarn today is clumpy and irregular, I know this.

I've sat and started to write here several times for the last few months.   Each time, I open up a little text box, and there are so many words, so many thoughts and feelings that all of a sudden a big blank happens between my head and my fingers...
I have updates to do... In particular, I owe Post Pals an update...  So I must pay that debt first, and hope that it gets me started.

Every time I write an update I expect things to quieten down.  I feel so humbled each time I open the door to find more post for my kiddies - even me (thank you Wendy for the oh so regular hand made cards).  I do not keep track well enough of the beautiful cards and letters people from all over the world and for that I am so sorry.  Often, I find pen and paper and resolve to keep note of you all.  So far, I have failed miserably, and can only convey in these updates the smiles you bring into my home.  Words are too few and too poor to express how I feel about this.

As ever, life continues to be a journey of ups and downs and unexpected pot-holes... quite a bumpy road this life of mine! 
Oh my glory, I've just realised that I have not updated since March!!!

The big news for Tom is that we attempted to make do without tube feeding.  He became very unwell during the first half of the summer term, with a lot of vomiting that I haven't seen for years.  School was taking it all out of him, and between the exhaustion, vomiting and terrible temper, I became quite concerned.  I did get an emergency appointment with his endocrinologist as the growth hormone treatment seemed the only new element.  It was a good appointment - one of those doctors who listens to me and with whom I can have adult conversations.

On the growth hormone front, the treatment is working really well.  Tom's growth has been exceptional.  Possibly this is the source of the problem... Despite this fantastic growth, and true bravery from a little boy who really does not like needles, I have been utterly unable to increase his food intake, be it through the tube or orally.  So... more growth, but no more food.  Kind of like trying to run a big truck on the fuel tank of a fiesta...

My concern was that the GH was affecting his heart - so we concluded that checking his heart before continuing would be wise.  I'm still waiting for the appointment, but other things have taken my attention, so I am waiting rather than chasing.  The plan is to start again, but at half the dose to see how he does.

The issue of tube feeding reared its ugly head once more at that appointment - how unusual it is to have a child of Tom's age be tube fed.  Especially without clear cause.

So I went home, to a half term house with Zack and Kesia in full-blown stress mode: shouting, crying, screaming, running away from home.  Not to mention Tom refusing food, both mouth and tube.  And I had pretty much had enough.  Of making feed, of having to fight with Tom each feed time, of doctors looking at me as though I were the one insisting on tube feeding needlessly.  So I stopped.

I explained to Tom that we were going to see how well he could eat.  And I watched.

Long, painful 4weeks short...

He did SO well.  At first.  The first three weeks went well.  He didn't eat loads, but it was regular, and he was drinking good amounts of milk.  He even gained a little weight each week.  And then, week 4, he just "couldn't" eat anymore.  I can't explain it differently.  He just wasn't hungry at all, even giving him access to the kitchen at will was no good.  He lost 5% of his body weight that week.

As much as I try to keep myself together, my emotions run very high where Tom and food are concerned.  Watching him lose weight was hard.  On the one hand, I have to show doctors that I am doing the best I can to get him off the tube.  On the other, I have to be answerable to family members who see Tom getting skinny and pale and listless.

End of week 4 we started night feeds again.  Tom chose to do that rather than day feeds.

End of week 5 I had to start full feeds.

I've had to take him to the optician - he had some strange shadows on the white of his eye.  She confirmed that it is a sign of malnutrition.

We're back on track.  It's taking time to get him back to his version of full health.  And it's taking time for my heart to mend.

I will write the rest a little later...