Saturday, 24 September 2011

A Special Memory

I thought for a while what my ‘special memory’ for this week’s special Saturday would be.  I have lots and lots of memories, some wonderful, some sad, some poignant.  I thought of how I held my beautiful newborn baby in my arms or the joy, tinged with fear I felt when we took him home from the neo-natal unit.  But these, and other early memories, were before we knew that he was different from other children, that his future wouldn’t be quite the one we envisaged for him.  In the end I settled on a beautiful memory that is all the more special because of that difference. 

Many parents recall their babies’ first smile.  Often it is before they reach six weeks, so they can pass that first all-important six week check at the doctors.  My little fella ‘failed’ that first test and was rescheduled for another check up two weeks later.  By this time, I had convinced myself he had smiled at me, though I suspected it was wind, I desperately wanted it to be a smile and so told the doctor he had.  In actual fact he ‘smiled’ for the first time around the nine week mark.  But in all honesty, he wasn’t a particularly smiley baby; reflux left him in a lot of pain and if he wasn’t crying, he was sleeping.  On those occasions when he did smile, they never appeared to be appropriate or in response to anything – they’d be aimed above our heads, to the corner of the room, at thin air ... anywhere but at us.  Eye contact was fleeting at best.  We later discovered he was visually impaired.  Whilst his eyes themselves were fine, the brain couldn’t make sense of the images it was receiving.  Effectively, we were told, that left him blind.  We were devastated.  There was however, room for improvement, as he grew older and his brain developed, it was hoped that his brain might start to process the images and he might begin to ‘see’.  He didn’t respond to sounds appropriately for the same reason.  His brain couldn’t make sense of the noises.  Whilst he could hear and startled at loud, sudden noises, sounds like our voices, toys and music held no interest for him.  He wouldn’t turn to the source of the sound and these too failed to raise a smile.

I remember sitting one evening in the living room.  It was early winter and the curtains were drawn.  I had the little man on my lap.  I was talking to him in that sing song voice people always reserve for babies and jigging him up and down.  And suddenly, out of the blue, he smiled.  But the difference, oh the beautiful, wonderful difference was the way his whole face lit up.  His previous ‘smiles’ paled into insignificance in comparison.  They were nothing but meaningless, automatic contractions of facial muscles.  This though was different.  This smile filled his face, creasing right up to his eyes, which sparkled in delight.  He looked at me, I mean really really looked at me.  And it melted my heart.  It was a warm hug that reached right into my very soul and in those few precious seconds he seemed to say ‘I know you – you’re my mum, and I love you’.  I cried then, as I am now writing this, at the wonder of that tiny miraculous expression of happiness.

My son was 9 months old when he first smiled and it is a very very special memory.

This post was written as part of the Special Saturday campaign to raise awareness of additional needs, 
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Sunday, 11 September 2011

Special Saturday: How my child has changed me

If you had told me 18 months ago that I would give up a job I loved to be a full time carer for my son, I would doubt you were telling the truth.  Now I 'earn' Carers allowance each month and know that leaving work is the best decision I ever made.

If you had said to me 18 months ago that I would become a dab hand at tube feeding, I would never have believed you.  Now I can do it with my eyes closed.

If you had told me 18 months ago that I would have the strength and courage and determination to challenge the opinion of Doctors and Paediatricians, I would have thought you had got me mixed up with someone else.  Now I trust my instincts and know that whilst I may not be a medical professional, I AM an EXPERT in my son's needs.

If you had told my 18 months ago that I would make new friends with total strangers through the internet, I'd have been insulted.  I've enough friends already - surely only loners and losers make 'cyber friends'?  Now I have a near army of 'special needs mum's' through Swan and Unique and facebook and twitter, who I can call upon, any time, day or night, who understand my worries and fears; who can answer the silly questions; put my mind at rest and really rejoice in the small steps and achievements along the way.  

If you had told me 18 months ago that I would regularly perform basic life support on my own child, I would have gasped in horror!  Surely no-one could do that?  And here I am, 18 months later, regularly resuscitating my son.

18 months ago, I could never have imagined the life I lead now.  To feel so vulnerable and yet to appear so strong.  To feel such love and to simultaneously feel such fear.  To plan so far ahead and yet live day to day.   To feel at times happier than I have ever felt and yet also so very very sad.  To use words like life limiting and life threatening and hospice in day to day conversations and yet still feel truly blessed. 

My wonderful, beautiful, special son has brought such joy into my life and in just 18 months has taught me so much.  He has changed me in a way I would never have thought possible and at times I don't recognise myself.