As the parent of a severely disabled child I've trained myself to notice the good days, the new skills, the positive experiences. If I hadn't done so, I'd spend the majority of my time in a sobbing heap on the floor.
All those who are familiar with the dreaded DLA forms know how heart wrenching it is to describe in great detail how much help is required to carry out ordinary everyday tasks such as getting dressed. You tick the box, you start writing in the 'is there anything else you'd like to tell us about the help your child needs to get dressed' box, then realise you've run out of space and you've only explained half of it, and not yet even mentioned jumpers and shoes and coats...
But we do it. We fill in these pages and pages of things our child can't do, because the DLA money pays for replacing the tshirts he chews holes in, the two pairs of jeans we purchase each week for him to reduce to shreds because he gets about on all fours, and the cost of washing every item of clothing after one wear because it will be filthy from food dropped down him or dribbling or a leaking pad.
So you concentrate on what will hopefully be the end result while you fill in the forms, feeling with every sentence that you are betraying your own child.
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