MUM MAY DIE WITHOUT RESPITE FOR PROFOUNDLY DISABLED SON

http://www.lookingforbluesky.com/2016/06/mum-may-die-without-respite-for.html

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WITH AND WITHOUT YOU (A DAY WITH SMILEY)

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If I’m lucky I get to sleep until 5.30am when the alarm goes off. Sometimes I think that Smiley can hear it too, because I hear her calling on the baby monitor at the same time. Today was one of those days: she wanted her wet nappy changed, and then I sat with her and had a quick coffee while the water heated up. I left her with the telly on, had a quick shower and dressed, ready for the day.

At 6.40 her home help arrives and between us we get her showered, which involves lots of logistics and hoisting and mopping – so I wash the whole extension floor at the same time. While her home help gets her dressed, I dig out and iron the clothes, and find her leg splints and put everything within reach.

 

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