Youtor
13 November 2024
YOUR LINK HERE:
http://youtube.com/watch?v=QZioG_0ploA
It is a strange thing to never see your child upright. To never see their hair fall down their back, or the shape of their face when they are looking up at you rather than across, to never see how tall they are or be able to stretch their arms out for a wrap round cuddle. Tiny things you would never consider until they are taken from you. • Equipment for children with disabilities is extortionate and so most families don’t get the luxury of using them. Nellie’s school has lent us a few bits over the holidays and we are so grateful. To see her like this was emotional. I still am in awe watching Ozzy walk around, see a back pack on his back to , see him spin and dance because it’s never saw with Nells. • There are so many aspects of being a human we take for granted like having a body that works.Equipment like this gives the opportunity to experience something as expected as being able to have your body vertically aligned. On the days when all else is failing most of us can count our blessings that our body is doing that for us at least. • Lots of kind people said let’s fundraise to get her this and if we had stability it would already be bought but the saddest thing about MLD is the rate at which it steals. A lot of children are in a lot more discomfort than Nellie and wouldn’t be able to tolerate this. We are so lucky she is still not on pain medication yet but we don’t know how much longer we have until this would be too much on her body. • So for the 6 weeks we have it, we are dancing, playing and painting as much as we can because with everything in life you really don’t know how long you have in the place you are at. • #disability #momlife #toddlers #specialneeds #medicalmom #tubefed #wheelchair #grief #loss #inspiration #motherhood #motivational
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