untangling this thing we call life…

Category Archives: random thoughts

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.


Yearning for the easy way out, while doggedly pursuing the rocky path…

It was therapy tonight and that thought has followed me home.

I don’t quite know when the pressure of anchoring Celebration to specific dates and days became a source of intense and traumatic pressure.

I do know it is closely linked with my lovely Offspring and their difficulty in coping with changes of routine.  Eldest’s first birthday is best described in terms of sadness and tears rather than giggles and cake.  His birthday falls two days after Christmas, and the little boy was already rather overwhelmed with presents and the general “otherness” of the day.  Opening more presents, coping with more smiling adults, and another day of “otherness” in routine was simply too much, and he cried, and cried.

My initial instinct that a due date of Christmas Day necessitates an “alternative” birthday was confirmed in that experience.  Since then, both Eldest and Sweet Girl celebrate their half birthdays in June as a main celebration.  The “birth” day is marked with a small cake and cards, and much much love, but presents and parties come in the summer.

As time has passed, I have watched these Days approach with increasing dread.  The pressure to have that one perfect day, to order, is just too much.

I live, well I try to live, in the now.  Each emotion I feel, or those I love feel is as valid as the next, and actually as the old song goes, “it’s my birthday and I’ll cry if I want to”.  If I feel sad, should I not cry simply because custom dictates I must be happy?  (Oh… I haven’t cried, nor felt the need today – just saying!!)

The true joys of life parenting children with special needs is that the little joys inherent in every child’s life are celebrated in their moments.  Each time Eldest comes to hug me, I relive the utter joy of his first hug, aged 2.  He is now 13 years old, and still every single hug is a source of immense joy and gratitude.

Each time Sweet Girl feels happy is a cause for celebration.  We mark the moment by talking of it, by enjoying that wonderful emotion.  No pressure, we both know it may not last and it cannot be simply replicated… it simply is, and in that being comes wonder at simple happiness.

Each time Little Man reads a little book and enjoys it, we are filled with glee!  He did it, he deciphered a story and enjoyed it!!  Each hurdle reached is a source of quiet celebration, each hurdle overcome brings with it immense pride and a determination to seek out the next one.

Do I document each of these moments?  No.. I would love to, but the celebration is so intense, so “present” that getting the camera out, or stopping to find a “way” to mark the occasion, would interrupt the celebrating itself.

And in the smallness of these moments, they are so numerous that marking and documenting them is simply unmanageable in the business of living.

I celebrate.

To the naked eye, I shy away from celebrations, I tuck myself away in the comfort of routine and sameness.

That routine and sameness gives us all a sense of safety that we desperately need.  But make no mistake: in that sameness and routine, I find my celebrations, and my hope is to make life itself a celebration.

Each year in September, or October, or November, I hope to find the courage to break with traditions imposed on me by the outside world and convention and do away with Christmas Day.  I want to simplify it (I do love more and more the home made gifts, and yearn for far fewer gifts received more preciously), and also in some way to lengthen it.  I want to wake up one morning, notice that all the children and Darling Man are happy and relaxed and decide: Today is Christmas!  Just because we are all ready for such a day and days like Today are rare.  We simply cannot produce that kind of togetherness to order on the 25th of December, just because society tells us: this is the day you should be happy together.

I haven’t found that courage yet, but each year I get a little closer.  I suspect in the future, not too far from now, we will have a family confab, and decide how “we” will celebrate.

Similarly each year around June, the stresses of celebration perk up.  Birthdays, parties, gifts, the intricacies of friendships in a world of autism and disability all combine to make Birthday a difficult day.  How to mark the important (?) passage of time?  Is it important to us, to the children, or is it simply important because everyone else says it is…  Certainly there is something wrong if we continue to mark these “special days” in spite of our emotions.  I do not want to celebrate a birthday if the birthday boy or girl is unhappy – far better to accept that today is an unhappy one, and celebrate another day.

Today is my birthday.  I am 41, yet I still haven’t celebrated my 40th birthday.  I still plan to, but I haven’t reached a plateau of tranquillity that allows me to do so in a fashion that I feel appropriate.  And I’m absolutely happy with this.

So you may get an invitation to help me celebrate “40” this year, next year… or maybe in ten years time.  Does it matter? I hope not.  I will simply enjoy and twirl and laugh my way through what I hope will be a wonderful celebration – when my heart is ready to rejoice unfettered!

Today has been a quiet day.  Such love with dozens of people wishing my a happy day through the magic that is Facebook.  Family surrounding me with love as well.  I made a cake, because the date was a good excuse to do so!!  And it was good, and absolutely enough.

But when I call to say, come and help me celebrate my birthday, do not wonder that the date bears little or no relevance to the date I was born.  Wonder and enjoy that I am happy and have joy to share, and that on that day I choose to honour being alive, being born to rather lovely parents who grew me up beautifully and continue to follow my journey through life with love and respect.  Lucky me!

I hate secrets.

No.  Really.

I.  HATE. Secrets.

They poison relationships, they cause untold problems, they fester and breed faster than something that breeds really, really fast.

That’s why I love blogging, but have no desire to write a diary.  There is something beautiful and liberating about the open book that is the blog.  Knowing that at any time, any person from any part of the world can leaf through its pages.  A couple of days ago, the statistics for my little simple tangles quite literally spanned the world.  People from France, Spain, Germany, Sweden, Croatia, Cyprus, Turkey, Pakistan, India, Thailand, Indonesia, Philippines, New Zealand, Australia, America, Venezuela dropped by to have a little squizzle at my (hopefully) unpretentious musings.

What they thought is not so much the point.  I find a simple beauty in that open book.  I love that through my little words, I have a connection, however slight to little spots of humanity all over the planet.

Knowing this about me, knowing that I tend to breathe deeply and plunge head in to even tough truths…

Knowing that sometimes the truth makes me and others sad, but that tears also have their place…

Knowing that by absolutely facing embarrassment with care, sweetness, compassion and patience, honesty is leading me to a relationship with my little girl that I am truly proud of…

Knowing all of those things about me, you (whoever and wherever you are) will perhaps understand the anguish I have been in for the past few weeks.

I have had to be “discrete” about a very difficult and painful situation.  Grown up, sensible, mature reflection means that I simply cannot write anything more about it here.  It has been leeching my soul, requiring hours and hours of delicate phone calls, “well-written” letters, checking, and re-checking, asking for help and once again telling my story.  More than anything I know that writing about the whole thing would have helped that little “me within” I wrote of a while ago. But the public nature of the blog made that impossible.  It saddens me that I believe strongly that writing about it would have righted wrongs (oh… notice that write rights wrongs?  how lovely… serendipity at work!) not only for the person I was working for, but probably for many others…

Today this poisoned dart was more or less pulled out.  The situation was resolved.  Integrity was lacking, honesty was very much in the back seat.  All is pretty on the surface and all parties concerned, I am sure, are sleeping peacefully tonight.  I’m a little sad that it had to be resolved in the way it did.  But all is an awful lot better in my heart now I am no longer carrying it around.

Taking the high road is often not easy or pleasant, nor does it often come with glory, thanks or even recognition.  The only solace (and it is in fact of great importance to me) is that I did the right thing at each step of the way.  I know that I could not have done better, that I stood up when I needed to, but backed down as soon as a solution became apparent.  So I too will sleep tonight.

By writing in this blog, I bare my soul and my thoughts, I place in the hands of the universe my Self.  I hope to accept criticisms and question those aspects of that Self that others may find difficult.  I love the meeting of minds that comes from conversations begun on this page.  In every word, you read Me.

The hardest aspect of the last few days has been the feeling that “I” was not heard or seen.  That a girl that looks like me was seen, but in almost every important way that girl was other… She was overprotective, overbearing, stubborn maybe… Certainly a pain in the behind.  I was not, I am not that girl.  And despite the axiom that we should not care what others think, I hurt at the thought that others look and me and listen to me, but neither see nor hear “me”.

I’m leaving you in the dark, big world.

I can only write what I feel, not what I did, or said, or thought.

The good in this: things always change.  Sometimes for the worse, sometimes for the better, but things always change.  This morning I hurt, I was afraid, I was sad and angry, disappointed and frustrated.  This evening, I am at peace.  I can move on.  There is even a little smile on my face as I can turn back to my “page” and let my fingers dance over the keys once again.  This post may well have rambled in a rather strange fashion, but as I once wrote, I don’t edit. So I’ve just skimmed to ensure that nothing “slipped” that shouldn’t have (those blasted secrets poisoning my life again!), but other than that, this is my ramble, my bramble, my tangle.

Simply put!


Find the little pink cloud behind all those grey ones...

Find the little pink cloud behind all those grey ones…

This was my sky on the way home from school this afternoon, and it struck me as wonderfully reflective of my simply tangled life.  It’s been a fairly grotty, miserable winter’s day; we woke to rattling, cold rain and wind strong enough to push you over.  The temperature has lately been freezing, but warmed up just enough to allow big grey rain clouds to roll in.  Not warm enough to feel remotely comfortable though.  One of those days when the wind lashes cold rain into your face, the sky hangs low and everything feels rather gloomy.

I bravely walked my way to school to pick up Little Man, and then followed his zoomy power chair all the way home.  No time for chat… he powers away, constantly looking for a bit of suitably wet and muddy grass to skid slightly out of control.  A successful skid is followed by a world class grin and a thumbs up to me (if I am within visible distance).

And out of the blue… well, out of the grey and the bluster… there it was: a little patch of pale blue sky with a fluffy white cloud.  The heavy lid of grey cumulo-nimbus that has covered our world all day gave way to the reality of the sky above.  Still blue, still beautiful with the occasional little cotton ball of condensation. Not only that, but the evening sun had coloured that little ball of fluff a pale yet clearly visible pink!

I claim that pink as red, and revel in the old saying:  Red sky at night, shepherd’s delight, which promises fair weather in the morning.

It was a tangled picture, combining galeful winds and grey, rainy clouds, with quiet blue sky and little pink balls of fluff.  However grim and grotty the day may have felt, that blue sky was always just beyond our sight.  And I’ve just caught a glimpse of my little pink cloud and chosen to interpret it as a good omen for the day to come!

Serendipity!  The effort made to walk to school led to me being in a position to see that little ball of pink fluff.  But I then chose to notice it, take a photograph, and putting my own spin on it.  As a result, I feel happy and looking forward to tomorrow!  This is serendipity in the making… 🙂

Drupelets, drupelets, d r u p e l e t s!!!

Today, thanks to technology, a little courage in getting to grips with something new, radio 4 and their podcasts, and remarkably being able to put my needs and wishes first, I learned something!!

Actually I learned plenty, in a short space of time!!  I learned of a fantastically influential mathematician who was in fact an imaginary person!  Whose work led to the development of algebraic geometry.  While this leads to use in sim cards and such like, we still have no idea of how scientists will eventually use this mathematics.  Nicolas Bourbaki‘s work spreads itself over several shelves of a good library, and is destined to make budding mathematicians quake in their boots… but once the mystery is solved, oh the joy, the sheer joy of the real story!!!

I love the fact that I can with no shame whatsoever admit to not understanding ANYTHING about this… but enjoy that I know it exists!

I learned about brambles!!  That equally loved and loathes plant, that grips you with its spines, grows everywhere especially when it’s not wanted, yet bears the most delicious fruit.  There are more varieties of bramble than you could possibly imagine.  It is a plant that defies categorization, being neither a bush nor a tree, nor yet really a herb.  Each stem lives two years, staying fairly unimpressive in the first year, but flowering and fruiting the second year before dying and being replaced by another.  Though pollen is essential to its propagation, the pollen plays no role in fertilization.  Each plant is the copy of its mother.

But I think that my favourite little bit of new knowledge, a little synapse that has been connected in my brain forevermore, is this word: drupelets.  A blackberry, you see, is not a berry at all.  A blackberry is a collection of drupelets, each of which is closer in nature to a plum than a berry.

Listen, revel, enjoy, learn:

Living World: Brambles

Nicolas Bourbaki: the mathematician who never was

Thanks to Sweet Girl’s MP3, my car’s media system and its instruction manual, my irritation at having no radio in the car and a little time, I thoroughly enjoyed a necessary trip today!  They are short programs, take the time to listen and let me know if you are as charmed as I am by the wonder that is BBC Radio 4!

Learn To Love Food

Food Fun For Feeding Therapy and Picky Eaters

Stories with Sam

Stories about our son Sam, his disability, our family and our lives. Sam is 8, loves stories and has cerebral palsy. I am learning to be his ally.

Yvonne Newbold

Doing whatever it takes to make life easier for special needs families and the staff who work with them

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Site of author Eli Glasman

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Cross Stitch Bobobitch Mononitch

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Grant me the serenity to accept the things I can not change; the courage to change the things I can and the wisdom to know the difference.

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thoughts at teatime...

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