untangling this thing we call life…

Category Archives: writing


I love words.

I mean, I REALLY love words.

I love the sound they make in my ears, the feel of them in my mouth, the sensations they provoke in me. I love that some words simply cannot be translated – one of my all time favourite words is “gemütlich”. The closest approximation is “cosy”, but that simply isn’t enough.

It struck me today that I am not a visual thinker. I find it almost impossible to visualise a box, for example, out of my imagination. Now, give me the word “box”, and the concept is there in my head, but so much fuller than a picture…

  

In my head, the one word box gives me these pictures and so many more, all encapsulated in three, pretty, sturdy, delightful little letters. If pushed to find an image of a word, I often find myself visualising the letters… in lovely fonts or a simply Times New Roman…

This last week has seen a lot of talk and actions around words, and images. There has been much talk about the power of words, and about what rights we have. There has been much fear, much pain and suffering and much thought.

I have far too little knowledge to comment specifically on the events in France this last week. I feel close to it through my family, yet distant too – my life is restricted and I have less space for tragedies at a distance than I should? wish? need?

What I do know is that I have three children, two of them on the autistic spectrum, and that fifteen years as their mother has taught me that words are extremely powerful. And as the wielder of that power I had better be prepared to deal with the consequences of the words I choose to use. As the wielder of that power it is my responsibility and mine alone to ensure that my words are understood as I mean them to be understood.

There is no room for “oh but you misunderstood” in my life.

There is no room for “but it was only a silly little drawing”.

There is no room for “you should have realised I don’t agree with you”.

There is no room for “I can say what I want”.

I use words to communicate. To help the person in front of me understand what I am thinking, what I am hoping for, what I need.

And words, those wonderful, magical words are also the greatest traitors. Taking away any language barrier, any cultural barrier, any barrier of age, or gender, or creed, or race, words betray us all the time.

Most arguments can be sourced in the treachery of those fey words. “You say tomahto, I say tomayto”… You say “not now”, I hear, “never”. You say “I like you”, I hear “I love you”. How many times have you been headlong into an impassioned discussion only to realise that you had been on the same side, but not realised it?

How many times have you been hurt by someone else’s words? And of those times, how many times did the other intend to hurt you? I’m guessing far fewer than those who intended pain.

So words, and communication between human beings is a treacherous, quicksand of a thing. Words can make you love, and they can make you hate.

If you use words, you must be prepared for their consequences. And you must be prepared for the fact that they may have consequences you never foresaw.

In that light, the notion that freedom of expression allows any of us to “say anything we want to” is puerile. It is simplistic, it is selfish, it is “spoilt”. It is not worthy of people who feel impassioned about human rights, about equality, about freedom.

With great power comes great responsibility…

All of us who use words are empowered, and as such we must be held responsible.

Choose your words carefully. I’d love to hear your thoughts.. but I’d love them to be shared in kindness and respect…



Me, uninterrupted There was a girl, a girl that was who grew to be a woman that might have been.  She had dreams aplenty, ambition, plans as all girls do.  She had faults aplenty too – stubbornness, a lack of confidence in spite of what others saw.  A girl, like so many others. I’ll call her Me. She grew… worked hard at times and slacked off others but by and large it might be thought that she fulfilled much of that fabled potential we see in our little ones. Time came for Me to spread her wings, and the haven of university allowed for a gentle departure from home.  Gentle enough I suspect to allay her parents’ fears and gentle enough too to give her the confidence to Become. She met her One and together they forged ahead into a new life – of work, of family, of Life in short. Eldest was born full of promise and hope, as most are. A bright little boy with mischief in his eyes, a wicked sense of humour and startling intelligence. Daughter followed a couple of years later, soon growing out of a disastrous head of hair into a pretty girl whose looks were mirrored in her kindness and perspicacious thought. Not long after, the family was completed by Youngest, another little boy with a smile to melt the hardest of hearts. Life went on, uninterrupted. Me… a teacher, a musician as a girl, was also a Mother. Music and lessons and childhood flowed past in a steady stream of giggles and tears, joys and frustrations. School days brought friends and gatherings. Friends with instruments helped spend evenings playing and days performing. It’s quite possible that Me found more confidence as she grew older, and began to think once more that she might be a musician as well as a teacher.  It’s very probable that she became a teacher again as the children went to school. These children that Might Have Been… Eldest I suspect played the cello, though he probably started with the piano and violin.  Daughter was a violinist who dabbled with the piano and recorder.  Youngest loved the guitar and drums – the rebel of the lot who in his teenage years would star in several bands. And the Me that Might Have Been battled with practising, and tears and rage as those children railed against those necessary routines. And the Me that Might Have Been played with them.  At home, at school, for exams and for play. I don’t know what became of Eldest, Daughter and Youngest.  Because this is not their story.  It is the story of Me. Uninterrupted. And because it is the story that Might Have Been, it is only a tiny part of that story… the tip of an iceberg that will never be seen.   Be, the girl interrupted There was a girl, a girl that was who grew to be a woman that is.  She had dreams aplenty, ambition, plans as all girls do.  She had faults aplenty too – stubbornness, a lack of confidence in spite of what others saw.  A girl, like so many others. But this girl was interrupted, and I’ll call her Be. Her One, her Eldest, Daughter and Youngest came as planned.  The music too wound its thread throughout her life. And then the thread was cut, or tangled, or lost. From one day to the next everything changed.  Life became about illness and difference and disability.  Life became about helping three Little Children that Are make it from dawn to dusk. Eldest still has mischief, a wicked sense of humour and startling intelligence.  He also has autism and depression that hover around him like a dense fog obscuring his vision of the path ahead. Daughter is more beautiful than she could ever have imagined both outside and in.  She is kind and full of wit. She is also autistic and suffers extreme anxiety and sensory processing disorder.  Her world is full of chaos and she must forever spend vast reserves of energy sifting the sense and beauty from the noise. Youngest… oh youngest has that smile! And spark and vivacity and strength!  And Noonan’s syndrome, which brings with it a wealth of charm and adversity from tiny height to a heart that doesn’t work so well, to tubes for eating and challenges to learning. Life was interrupted. Enriched, thwarted; strengthened, twisted; brightened, darkened. Somewhere along the way, music was lost. And this is where Be’s story stops for now, because unlike the story of Me, it lives on.  It is not the story that Might Have Been, it is the story that Is. So unlike the story of Me, the story of Be has the power to change, to evolve, to adapt. Unlike the story of Me, of identity of “I”, the story of Be is a story of doing, of being, of “am”. It may not flow quite so prettily, it may not be quite so happily ever after, but it flows with a fierce sense of reality and strength, and a certainty that propels her on with a smile that reaches depths Me could never have imagined.



Sweet Girl is going through strange times – I do wonder if hormones are at play.  Anyway, despite really not wanting to, she has managed to do her homework.  She must use words in sentences to learn their spellings.  She has given me permisson to share it with you all.  The given words are in bold and blue, and you should all know that she gets extra marks for making her sentences interesting.  In the last few weeks she has challenged herself to make a complete story from the set of often disparate words… My daughter the wordsmith, how I love her!

A sovereign, in 1066, was in disguise having a coffee at Cafe Nero.  Being incognito, he found that he had to pay.  However, as this was extraordinarily rare the king, whose name was Toby, had no cash in his pockets.  Luckily he had just recently invented the cheques so he took out his feather quill and wrote a cheque to the waiter.  As he handed the cheque to the waiter, King Toby realised in a sudden tsunami of shock how utterly grotesque this person was.  He wore a hippy robe and a jester’s hat with a pale face covered in clown markings.  Queen Tobathena suddenly burst through the wooden doors and screeched at the top of her voice, “Toby, oh Toby, I have some confidential information that is essential I give to you!”.  Upon seeing the piece of parchment in her beloved’s hand, her whole body became stationary with shock.  For five whole minutes she stood there, motionless.  King Toby, to awaken his wife, tickled the beautiful lady under the chin.  Tobathena took one glance at the horrific waiter and immediately recognised him as a hugely influential newspaper reporter who encouraged people to like the king.

I’m told that this is the end.  It is designed to be a cliffhanger, but she also informs me that there will be no follow up.  That’s our lot!  I’m kind of gasping for the rest, but I shall have to live with the disappointment, for this young lady once decided rarely changes her mind.



Tonight…

I am that little boat among the storm of my beautiful Children’s emotions…

When the sun comes out, that little boat will bask in its warmth.



Oh yes, You the System, You the Bureaucrats, You the Jobsworths, You the Keeper of the Budgets, You who forget that your job is to Spend that money on those that need it.

You will always underestimate me and the others I’m lucky to count as friends, because You lack the Imagination, the Idea, the Notion that I might be Right.

I might be asking for the Bare Minimum.

I might be so accustomed to taking the Moral Highground, and Biding my Time, and Waiting, and Smiling that I will Always prevail.

Go ahead, Underestimate me,

Yours sincerely,

Mother of Special Children



Yesterday I read a lovely blog post – lovely simply by dint of its honesty.  These blogs are the ones I love to follow – those written by people who are moved to share their thoughts and their stories and who feel the pull of truth on their writing.  Dan in this post found himself writing something that he did not like about himself, and he shared it anyway.  His is an extremely well-followed blog, unlike my little corner of the universe, and people react to him with the vast array of emotions available to the human race.  Some good, some bad, and some tremendously hurtful emotions.

So he answered them today – something I believe no blogger should feel compelled to do, but something that I believe most bloggers feel to be an integral part of this strange craft.  I just read his answer today, and found it truly lovely.  Having shared a darker part of his past yesterday with seemingly no compunction, no concern about how others’ reactions might affect him, he was far far more reticent to share a bright part of that past.  Sometimes it’s harder to talk about something good we did, because we fear the idea that the good deed was a bargain with the universe: “See, Universe, I did a Good thing… now you owe me.”  Doing something good makes us feel a better person, and at immediately guilt can follow – did I do this to feel good, or did I truly do a good thing.  We are now in the realm of a philosophical discussion about altruism.

So here is my story.  About finally having the courage to step out of my comfort zone… or actually, discomfort zone… and doing something I knew to be right.

We are taught from the youngest age, Don’t talk to Strangers.

We are taught from the youngest age, Be king to Others.

We are rarely taught the difference between these Strangers and Others.

Most of us bumble along, being kind to those most like ourselves.  The old man on the bus who mumbles away to himself, possibly carrying a paper bag and looking unkempt?  He remains a Stranger.  Why?  Because we are afraid.

For a long, long time, I have wanted to be Brave.  I see the pain in people’s eyes, I see the dullness in their faces, and I want to Help.  I want to offer a meal, an ear for a talk.  Money leaves me feeling uncomfortable – often because I don’t carry any, more often because I would rather see a hungry person with a fully belly than…???  Fact number one in this tale… I have preconceptions, and I am stuck firmly in my comfortable, judgemental life.  I don’t want that money to be used on drugs or alcohol.  So the reality is that I am not giving that money.  I am holding on to it while it lives in someone else’s pocket.

This dichotomy has always bothered me, and is the reason why I struggle to hand over money to people in the street.

That’s alright – nothing to stop me handing over a coffee, or a sandwich?  Nope.  Nothing at all.  Except fear.  Accompanied, I’m afraid, by excuses.  After all, I have a baby in a pushchair, it’s not reasonable to approach a homeless person.  I’m in a rush today.  What if …???  That’s the big one… what if?

I’m working on it, ever so slowly.  The cans of soup or dog food (none needing a can opener) added to my shop if I have seen a homeless person sat outside the supermarket… that kind of thing.  But if truth be told, too little, too slow.  (Because I’m not as good a person as I’d like to be.)

And then I am a mother.  To three children, all of whom have disabilities in social functioning.  All of them find it far more difficult than their peers to differentiate between Strangers and People I Know.  One would never interact with either population, Two desperately wants to Help both populations, but is terrified of contact with either, and Three happily gets on with Anyone.

Stranger Awareness is what it’s called in grown-up circles.  Stranger Danger is the term used in school.  And it’s apt: in the last four months in our quiet suburban village, there have been three attempted child abductions.

For One and Three, this area is really very straightforward – when out and about, talk to Your People (family members, carers, staff members, people you know), do not talk to Strangers (people you do not know).  For them, this is what is needed right now.

For my glorious Two, the waters are muddying.  She asked me recently, “Mummy, I don’t understand.  People always tell me not to talk to Strangers, but what if the Stranger is hurt?  Shouldn’t I help them?  Mummy it hurts me when someone is hurting, and I really really want to help, but if they are a Stranger, I’m not supposed to?  I hate it Mummy, what should I do?”.

For Two, whose heart flows into her entire being, the pain of someone she can see is Her pain.  Her intellect may remind her of Stranger Danger, but her Heart tells her, Help.  The difficulty comes because she is incapable of determining truth from manipulation.  Other from Stranger.  And while I love her Heart, she is also still a very little girl, and very vulnerable.  And as much as I hate to close her Heart at all, I need to protect her, and I need to teach her to decide who is Other and who is Stranger… 

A couple of weeks ago, Darling Man and I took Eldest to London.  A lovely day was had by all, though the two boys returned to the station hobbling and moaning about their feet!!  We got on to the train, all smiles… a happy family having experienced a happy family outing (oh my, did I ever think that would happen!!!).  And suddenly I overheard a lady crying on her mobile phone.  I had noticed her sitting down, without more notice than I usually give to Others on the train.  Yet here she was, clearly struggling to contain her emotions, clearly in distress.

My Heart wanted to help.

My Brain went into overdrive, analysing the situation – all of which happened in about one minute.

  • She was clearly an Other, not a Stranger – well dressed, on a train obviously with a ticket, just a nice lady upset.  And yes, my Brain is Judgemental, especially in analysis mode… not really something I’m proud of in this kind of instance, and yet probably necessary to most decision making.  So approaching her posed absolutely no threat to me (or my child sitting with me).
  • Darling Man was with me, so if I approached her, I need not even tell Eldest – he did not need me.
  • Would I be helping if I went to see her?  That was a big one.  To intrude or not?  Would she want her pain and distress to be acknowledged, or was she hoping it was going unnoticed?

Truly, that last point was my biggest if not only hurdle.  And so easily, I could have chosen the easy option.  She was trying to control those tears, she must surely want to be left alone.  At the same time, her pain and hurt were screaming at me.

And I did find inside me to be a little Brave.  To listen to my Heart a little more than my Brain.  I stood, walked to her seat and leaned over to ask quietly, “Are you alright, can I help in any way?”.

She was a little “british” and tried to wave off all that pain, but her eyes were saying, “stay!”.  So I asked her, “would you like me to sit with you?”.  I suspect her brain started listing off the Other vs Stranger debate… and let’s face it, I’m a pretty safe bet: under 5 feet tall, with a slightly mad flowery dress, but nothing to make you run.  Relief flooded her body; her shoulders dropped an inch or so; her mouth curved into a smile; a few tears escaped down her cheek; she said yes please.

We had a lovely chat until I had to leave.  I did ask her if she would like me to continue with her, but she had calmed down enough to feel safe alone, knowing that someone was meeting her at her station.  I met an Other, whose name I will never know.  I learnt her life, which sparkles.  A life with Happies and Sads, Ups and Downs, a sparkly life like so many others.  And in that little moment of pain, I was able to sit with her and wait for the pain to pass.

I had no plans to share this here.  It was a Good thing, one of the few times my Heart led me past ingrained fear of Strangers towards kindness to Others.  And it was not done for pats on the back or congratulations.  It was simply the right thing to do.  But then I read Dan’s post (click on the link up above if you haven’t already), and I thought… he shared a moment of “not being Good”.  It’s not that simple – he did what the vast majority of us would have done.  And he was clobbered for that moment.  I love that as part of his response he dared to share a moment of being Good (I’d like a super capital letter there), because that is as much a part of his Being as the moment when, in his words, he made the wrong decision.

So a little, counter-intuitive part of me is daring to share a moment of making the right decision.  That, and just to put out there in the universe that while there may well be Strangers in our world, there are also Others.



There’s been a lot of chatter in the last few days about the pain suffered by people with Noonan syndrome.  It’s something that has only recently been acknowledged by the medical profession, and a beautiful aspect of the internet is that patients and their parents communicate.  Then, as a force to be reckoned with, we approach our doctors and tell them, and repeat over and over again that so many of them suffer chronic and severe pain that they eventually start looking into it, and even more eventually agree that it is definitely a characteristic of the syndrome.

Theories abound as to its cause.  For years, Tom’s pain was dismissed as growing pains.  If you could see his growth chart you would see quite how laughable this is.  Here is a child who would scream in pain every single night for years and years and years, and yet there is no growth spurt on his chart at all.  Just steady, tremendously slow growth.

After six years of this, I wrote a letter to all the professionals involved in his care, and one doctor responded, getting him referred to the chronic pain team.  His pain has since been managed.  It is far from gone, but thanks to medication and physiotherapy and a lot of pacing, he rarely screams at night.

This got me thinking though… so often when one of our loved ones is ill, or dying, or has died, our first question to the medics is a pleading, “but did he suffer?”.  And reassurance is given and sought in the negative.

I am the mother of a child who does not know a life free from pain.  Pain is simply part and parcel of getting on with moments.  So what of me and what of him?  Do we not then achieve the peace that comes from knowing no pain was felt?

The more I think about this, the less sense it makes.  I’ve been lucky enough to endure a reasonable amount of pain at times in my life.  From the time I was ten, my legs and joints were very painful – I was never without some kind of tubigrip or bandage or pain medication.  I never really though twice about it.  A few years ago I hit crisis point.  I could not walk to the end of our road without pretty much collapsing, and I never achieved deep sleep due to widespread pain.  I was diagnosed with fibromyalgia.

[I’m fairly sure this was misdiagnosed… since cutting out gluten and dairy, nearly all of my symptoms have disappeared – pain free is pretty cool! ]

So…. speaking from the other end, this is what I noticed.

Pain is not a life choice.  It is not something that one willingly enters into.  But at the same time, the endurance of pain is not actually that big a deal.  You do what you can, you take medicines if they help, you manage the pain as best you can, and then you kind of get on with it.  Your life can become very restricted, and that can impact on your mood.  But it truly just … is.  I never felt as though my identity had been taken away, I never felt as though there was no point in anything any longer.  While I am sure some people are pushed to that, I think that those extremes of pain are in a different league, and that more likely is that there is another underlying problem causing that depression.

Pain from the perspective of the person enduring it is no fun.  But it is much easier to endure it than to watch someone you love endure it.

Seeing my loved ones in pain, either physical or emotional is far harder (and dare I say it, more painful) than even the worst day of “fibro” pain I suffered (and there were days I spent constantly in tears because I hurt so much).

I come to think that our desperate plea for our child, our partner, our parents not to be in pain is far more selfish than we think it may be.  The idea of pain is utterly dreadful, and our emotional hurt is something we desperately shy away from.

Little Man comes hand in hand with pain.  And after ten years, I am seemingly quite cold hearted about it.  I still insist he gets up, climbs the stairs and comes down again if he has forgotten his socks in the morning.  Once he has told me two or three times that he hurts, I will ask him not to whine because I cannot take the pain away.  I will administer medication, heat or ice packs and massage, but whining just makes me narky, and that’s no good to anyone.  His pain is physical, and quite, quite horrid, but if I allow myself to hurt emotionally in reaction it will damage my ability to help him as his carer.  It will also give him the message that pain is quite literally dreadful… something to be dreaded.  And if you dread something, your body tenses up.  And that will increase the pain.  So in his case, it’s really a case of tough love, baby!

Sweet Girl and Eldest are much more complex for me.  They experience a great deal of emotional pain.  Anxiety, fear, dread, anger at times, confusion… all of these almost constant emotions lead them to be very fragile, and they just hurt.  Tough love doesn’t help here.

I am trying for myself and for them to learn a little about acceptance.  To embrace the fact that life is not about just happy.  That it is a constant ebb and flow, and emotions and circumstances are all part of that ebb and flow.

Sweet Girl told me last night she was panicking (she is due to board at school and is getting nervous).  My response a few years ago would have been to wrap her into my arms and try to make the panic go away… reason it out of mind.  But last night I told her that it was ok.  That she could just let it happen for a while.  This new situation makes nerves appropriate, and we know that when she is nervous she tends to panic.  So actually, panic was perfectly reasonable.  We focussed on the idea that it would pass.  She wasn’t entirely convinced, but we spoke of listening to a CD or reading an easy book to try and let the panic drain away without being fed by made up worries.  She kissed me and went to bed, and was asleep twenty minutes later.

Eldest is supposed to be at school as I write this.  We haven’t left home yet.  Darling Man has had to take the day off work, because we had fears about Eldest’s aggression.  He’s just scared.  A lot of it is Aspie reactions to transition, and a good deal more is pain that his best friend is no longer there.  And he’s big.  So we’ve restructured our day because it’s the only thing to do.  He is in pain, and I hate it.  Writing this is helping me realise that in a similar way to Little Man’s pain, if I indulge my own pain at seeing him in this state, I am not helping him.

I will allow myself some tears on my way back home later, because tears wash pain away pretty well.  But I’ll also remember that this day, today, was painful, and that’s ok.  It will pass.

Pain just is.  Those who feel it are usually very good at handling it.  We need to accept that if there was pain it was experienced, and that makes up the sum of that person at that moment.  It need not be bad or good, but I think it must be accepted and acknowledged.  After all, if those doctors tell you that your loved one did suffer… what then?  What changes?  Not you, not your loved one, not how much you love them.  But maybe you don’t feel quite so bad… well that’s some kind of anaesthetic, but it’s not real.

Face the real, because however tough it can be, it’s brighter and braver and stronger than any fiction or fantasy.



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