The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

How my disabled 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.