untangling this thing we call life…

Category Archives: music

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.


There’s a lot on my mind!

Another wonderful blog award has come my way.  I know many bloggers are very cynical about these, comparing them to chain letters, but for me, spreading appreciation, kindness and sharing wonderful writers is nothing but good!  However, tonight is not that post because I have neither the enrgy nor the time to dedicate to it…

I have a huge amount of untangling to do with regards to a recent news story: that of a mother who “stole” her son away from doctors.  The little boy has a brain tumour and radiotherapy is the next course of treatment.  His mother says no.  As a mother with some experience of childhood cancer and with many, many (far too many) online friends whose children have and had cancer I believe very strongly that a patient (and in the case of young children their parents) must have the choice to refuse aggressive, damaging treatment, especially when results are far from guaranteed.  It’s a very controversial topic, I’m aware.  Which is why tonight will not be the night for that post either!

Mental health!!  There’s another thorny tangle in my mind.  I have, over the past several years, had a number of battles with depression.  My biggest hurdle, and that of doctors trying to help me, is that my depression is not clinical.  I think they call it situational.  Of course, the stresses of my life tend to go on long enough that what is initially situational does turn quite major and clinical.  And the horrid thing about depression is that once it takes hold, there is no “just get on with it”  available to you.  I’m not far from having to decide whether I need to consider anti-depressants again, but it is a tangly question.  I’m not against them as such, they got me through a very difficult period.  But they come with side effects both physical and psychological, and I’d rather not!  It’s a tangly tangle that would certainly benefit from some writing to simplify it.  Again, too thorny for tonight!

Which brings me to the conclusion that although I have much that I need to lay on the page in order to gain a little clarity, I have to wait for some emotional energy to return after a gruelling couple of weeks.  And yet, I need to write because the act in itself is so beneficial to my state of mind.  And also because I know that in writing here, I am able to share a little of myself with loved ones who live too far to knock on my door and make me a cup of tea!!

So tonight’s topic is that Family Day I promised us on Thursday!  As with all such promises it involved high expectations and thus came with a few little lows, but on the whole we had a lovely day.

I began with a surge of adrenaline equivalent to that experienced by a normal person doing a bungee jump.  (My brain provides me with utterly excessive amounts of the stuff for ridiculous reasons – I hate this chemical more than you might think, and cannot for the life of me understand those who actively seek it!) In this instance, I was quite stressed because I was expected at school to accompany the choir for its Christmas concert.  This would have been absolutely fine if it had been held in the afternoon as scheduled.  Instead, the time was changed at the last minute and the concert was held in the morning.  Which left me double booked, with the children having their Christmas ride at ten o’clock.

With a little ingenuity and the advantage of having two vehicles, Darling Man and I had worked out a plan that would get the children and their teaching assistants to the stable on time, and me as close behind as I could.  I duly took the children to school in the car, only to get out of a badly smelling automobile – drat that Sod who rules my life!!!  (For those who do not know it, I refer to Sod’s Law… click away!)  Having phoned Darling Man he appeared unsurprised, having experienced a similar problem recently (could he not have warned me???!!!).  On top of a high level of adrenaline to start the morning, I experienced another little surge… heart rate jumped a little higher, acid reflux good morning… oh the fun!!!

We decided that Darling Man would collect the four as  previously arranged, and would wait for me with engine running…

I cannot say that I enjoyed the concert.  Everybody performed very well, but my mind was firmly on the clock…  Heart rate loud and fast, and frankly interfering with my ability to keep time comfortably.  How tempting it was to speed up the choir pieces (with the excuse that I couldn’t see the conductor!).  I didn’t, because I am basically good!!!

And goodness won, because I left at ten o’clock and was at the school door before the children!  Hurrah for me!  Of course, my body was not so quick to respond and it was about forty five minutes before all bodily functions returned to a satisfactory base line…

I love to see that real smile... Thank you RDA!

I love to see that real smile… Thank you RDA!

I have not written yet about the amazing organisation that is Riding for the Disabled, but that is another post waiting patiently to be written.  Little Man has been riding with them for about two years now, and we have seen astounding improvement in his core stability and strength.  Sweet Girl has just started and for both children, this half hour of the week shows them at their best.  They smile, they are truly happy.  They feel safe and cared for by staff, volunteers, parents and ponies.  They each have “their” pony, and a real bond builds over time.  Little Man has been riding Jim Bob since he started, and Perry is Sweet Girl’s pony.  She shows real promise as a rider,but what the experience offers her is a chance to build on her self esteem, a time to let go and be herself without judgement, and the emotional support without which she could not manage this activity.  Despite her ability, she would not have the confidence or courage to ride in a more conventional class.


Tom is absolutely in his element… his riding school, with Jim Bob on the way, dress up and Christmas music. Happy lad!

Christmas ride… so much fun!!  The ponies get dressed up with tinsel (well, not Rollo, who cannot abide dressing up… we suspect he may be autistic).  His rider from our group is an amazing little boy who also has autism, and agrees wholeheartedly with Rollo on the subject of disguises.  Along with a giant Christmas tree in one corner of the riding school is lovely cheesy Christmas music, and the ponies, children and volunteers then perform their ride.  This is choreographed so that the ponies perform figures of eight, allow those children who are able to to show off their trotting, and generally show themselves to their best.  The children are usually asked to wear red, which while a great idea is quite tricky over a big winter coat.  In view of this, I chose to make some tabards that would be easy enough for most children to manage (large head holes, no armholes to negotiate), and would not flap as this can spook the ponies.  In the event, only my two chose to wear them, but I have now donated the five tabards to our RDA group in the hope that they will be enjoyed by other children too.

Little Man is helped full time at school by the lovely, straightforward and dependable Mrs K, while Mrs V helps Sweet Girl at the beginning of each school day.  Both of these wonderful ladies have a lovely affinity for my children and make school possible for them.  It was a real pleasure to be able to invite them to this event, and they both seemed to enjoy themselves thoroughly – despite the cold!  It has to be said that Santa was very slow to hand out his presents this year, and our toes were froze by the end!!!  A cake and drink in the hut helped warm our cockles before we headed back to school to drop off the grown-ups, and home with our outlaw Little Man! (Sweet Girl is only able to be at school in the mornings at the moment, so we were only “stealing” Little Man away).


Christmas tree 2012

Christmas tree 2012

We had a very gentle and slow afternoon.  A family viewing of “Love Actually” to start the Christmas season, and then decorating the Christmas tree.  Darling Man found a selection of Christmas music to accompany our job, and the children had great fun rediscovering our baubles and decorations.  As with all such activities it was over in a whirl and left the children high as kites, and the grown ups exhausted and a little flat! 😀

We now have a lovely, warm sitting room with a beautiful Christmas tree.  Next week, we are to have the visit of a chimney sweep so that we can an open fire to the picture, and some marshmallows on sticks for the perfect evening!

Family Day was good!

Music Note Bokeh

Music Note Bokeh (Photo credit: all that improbable blue)

I’m standing quite quite still, because there’s a feeling that if I move this fragile thing I’m glimpsing from the corner of my spirit will disappear.  I don’t know what it is, but it’s come out from hiding quite suddenly without warning and is standing in the wings like a young wild animal.

Before life became the ball of tangled yarn that is my familiar, I sporadically experienced panic attacks.  They came and went a little like summer storms: sharp, sudden, violent but ultimately brief.  In the midst of the panic it was almost impossible to imagine a state of being that did not include the drum of a heart beating wildly, that bitter metallic taste in the mouth and the feeling of riding a wave of fear so huge that it threatened to engulf me.  But soon enough, it was over.  And once gone, it became difficult to imagine why and how I could have felt that way.  Thus is the nature of the panic attack.

Yesterday, I played the piano.

I’m still standing in the wonder of this, and I’m doing my best to simply experience it.

This afternoon, once the children were up showering I found the time to give in to the pull of it once more.  All day, two things have happened to me.  First, a nameless draw, a pull to go and sit at the piano, play and just be.  There are no words associated with this either positive or negative.  It just is.  It hasn’t happened to me in years.. and years.  Second, a very conscious, very wordy thought:  what if I can’t play anymore?  What if yesterday was a fluke?  What if I scare it away?

I don’t know how to express the difficulty in overcoming that second voice.  Sitting at the piano was easy enough.  Playing happened.  Not quite as fluidly as yesterday, but it happened.  I was able to quiet the voice in little flashes.

And in those flashes, something quite wonderful happened.  I think it’s called peace! (what do I know?… it was good!)

What struck me afterwards is that my life now is in many ways one big, long panic attack.  Fear and Anxiety are two companions that I live with day to day.  They don’t exclude Happiness or Joy, and I can honestly say now that they don’t make life intolerable (they did, a few years ago, but I’ve been working!!).  But I don’t think any moment goes by without Fear or Anxiety lurking somewhere in the background.

Today, I was playing.  A simple sonata by Beethoven, one of my favourite Preludes by Bach (F minor, BWV 881) [oh my, I even referenced music… good golly green giant!!!], a Nocturne by Chopin.  I’m trying not to play pieces I “know” so that my brain doesn’t get in the way too much.  New pieces are “allowed” to have mistakes.  The Bach is an exception.

The pieces aren’t important in themselves.  The point, today, is that as I was playing, I experienced some infinitesimally small moments devoid of fear and anxiety.  Isn’t it funny that as I have typed this, the words themselves have lost their capital letters?

I’m living a funny old time today, yesterday.  Change, positive change of a very profound nature seems possible.  I have no idea what to make of it, and I am trying very hard to simply let it happen.  That over-analytical mind of mine needs to keep quiet!!!

There’s something about my playing and the kids too… but that’s even more mysterious than what’s going on in my head, so I will have to keep listening, watching, experiencing until I find out more!

My words today are serendipity (Cafe Casey, thank you for yesterday!!), and epiphany…  I’d love to share your serendipitous moments, your epiphanies…


I played the piano today!

If I write it here does it make it more real?

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