A Funny Old Week…


Yesterday we took delivery of Lilly’s first ever wheelchair which was a bittersweet moment. Up till now she has had a special needs buggy (which I hated) but her core strength has improved so much that a wheelchair is now suitable for her needs.

She loves it. And I mean REALLY loves it. I showed her how to move it by pushing the wheels with her hands and Little Miss Tenacity has spent all of today practising and woe betide anyone who tried to help. She learnt how to move it within half an hour of me showing her but has stressed herself out. Her brain knows exactly what it wants to do but her little body won’t do as it’s told. I hate just having to sit back and watch her get upset and frustrated. She won’t accept any help, she is so fiercely independent. I feel helpless.

She is watching some dancing on TV at the moment and keeps telling me about it. We had a little ‘chair dance’ along with it but then she started pointing at her feet and then at the dancers and saying ‘no’. Is she starting to realise that she has a disability? That she can’t use her body like the dancers on TV? I have been dreading this day…..

I’ve had a lot going on this week and that combined with Lilly not sleeping well for the last few nights has left me feeling a bit delicate and woolly-headed. I feel the need to reboot, so this weekend I shall immerse myself in my family and have some early nights.

And maybe some wine…..

N x


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