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Showing posts from April, 2015


You start screaming so I lift you to see what's wrong, Nothing is obvious apart from your distress I see you pulling your eyelashes The tears running down your cheeks I hold you close, whisper in your ear that it's ok Your hands are covering your face You scream on and on ,  Eventually your screams turn to sobs which turn into sniffles  You keep your eyes covered refusing to look at me, If I try to move your hands you start to get upset, Eventually your breathing slows and becomes deeper,  I know you are sleeping I keep cuddling you close wishing I knew what was wrong When you wake up from your sleep you aren't happy You scream and cry in distress, I try to hug you but you push me away I put my hand on your back to comfort you but still you scream even more You push me, kick me your way of telling me you can't bear to be touched I sit beside you letting you know I'm near It breaks my heart that I can't comfort you That I can't just scoop you into my arms to comfort... I try lif…

Years flying past, still waiting on answers..

As Roo's fifth birthday approaches later this year I never dreamt that we would still be on this journey - being undiagnosed. When his issues came to light at 11 wks old and underwent tests in hospital I naively thought that they would find what was wrong and give him the treatment he needed and then everything would be OK little did I know that it was the start of a long journey. As the months,years went by I found it hard to understand why consultants, professors in the medical world could not find out what was wrong with my son, they had been to university for years to train in their profession so surely they should be able to find out what was wrong. Not long after we came across an article in the paper of a little girl called Jess and it talked about how she was a SWAN - Syndrome without a name so I was curious and started googling and soon came across the SWAN Facebook page & website I was amazed that there was many other children like Roo out there , who were als…