Sunday, 27 November 2016


This week we enjoyed a family day out to Waddesdon Manor.... a local National Trust property near where we live. We've visited it every year for a number of years now and look forward to it as part of our Christmas traditions and a way of getting us in to the festive spirit. We enjoy going to see the house, trees, lights and doing some Christmas shopping at the wooden cabin "market" set in the grounds around the Manor. 

Saturday, 19 November 2016

Equipment quandries!

The hardest thing to cope with after the death of a special needs child is adjusting to the lack of their presence and love being in your home. After so many years of caring for them.... the adjustment to their "void"  and to a different "way" of life is very slow and awkward.
It's made harder by the mountain of equipment that's left behind... a living memorial of that life, each and every day it remains there.
It's not that you don't want to be reminded of  your precious child... you want to remember every smile, every sound, every hug and nuance of who they were... AND be reminded of the joy, the lessons  and the good times that they brought to you. 
What you don't want, is the remembrance of all the fights for care and equipment.... and the headaches and energy spent on trying to source and meet those needs... 
Having to walk daily past a room still full of those reminders is painful.  

Saturday, 12 November 2016

100% ?

 It's the middle of the night and again I sit here not sleeping... thinking of Heni.... analyzing her life and the life we've lived with her over the past 21 years.
Earlier this evening I was looking at photos of the children when they were all younger... reminiscing of old times and feeling a sense of sadness. It was a feeling of having missed out on seeing my babies grow and having missed a lot of their childhood because of the time that it took to care for Heni's needs... especially in those early years. 
I've also been missing her and feeling a sense of guilt for not being able to give out 100% throughout those years to either her or my other kids. 

However, as I have been sitting here, a picture crossed my mind of years earlier (prior to any children), when I would go down to the athletics track to train. My coach would line us all up with a schedule each evening and would vary the workouts on each training session. Sometimes in the winter it would be a slow, longer run to build up stamina. Sometimes it would be a weights session to build strength. As the seasons changed so would the workouts. Sometimes he would give a pyramid of runs (3 x 2oom, 2x300, 1x400  and then back down again) and each run would have a percentage exertion level to aim for. 
As time for competition approached, the training distances shortened and the intensity increased to build speed and agility... but always the exertion level would only ever range between 60-90%.... we were only ever asked to give out 100% effort in the odd sessions during the few month prior to the competition ....followed by a light few weeks.... and then during the race itself. We were never asked to give out 100% effort  for 100% of the time. That would have been totally unrealistic and even dangerous....resulting in  fatigue, burnout and injury.

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