Far too much time has passed for me to try and catch up, so I guess it'll be sporadic postings every now and then. And that's probably /hopefully a good thing, because in hindsight, this Blog is often my therapy /outlet at our darkest patches. And we don't like those thank u.
Well Hope hasn't exactly been a picture of health recently: the flu jab in december really took it out of her, and since then she's had a chest and throat infection. Though she's on the mend, her illnesses seems to be a vicious circle of being ill, not eating, therefore not taking her epilepsy meds properly, getting dehydrated, and therefore having more seizures and being more lethargic... Not eating etc.
Anyway, this is supposed to be a happy post. Her wheels are here!! A momentous occasion!
I was worried that they'd arrive, and that even after all the effort that went into getting them, that perhaps I wouldn't like them as much as I thought I was going to. Or that I'd have some issues/ personal
Battles to wrestle with over what it actually is/ represents. As in, it's not a pushchair. It's a 'postural seating system' or wheelchair. It represents That my honk can't walk. That she's different. However, it is so splendid, I am pleased to say, I have no such issues. It's nicer than I remembered, and seeing Hope so comfortable in it, just makes it even better :0)
Thank you doesn't seem to cover it really, but thank you so much to everyone that made this possible!
What's more, due to the late (but rightly so) contribution to the wheels by wheelchair services (they finally agreed to take back the useless wheelchair they supplied, and give us it's value towards the stingray), Hope now has a nice amount of money left in her bank account. I decided to get some more extras for the stingray; an extra harness, a grab rail and a play tray (expensive extras totalling just shy of £200). With the remainder of her money, I intend to buy her some 'switches' and switch toys, and a special swing for the garden. Hope LOVES swinging, but her head control isn't strong enough to cope in ordinary swings.
More nice news: I've mentioned the rainbow trust before. We have S from there help us when we need it (though I'm pleased to say we hardly ever do these days- though I know she's there should we need her). Anyway, last year, I shared Hope's (and our whole family) story, and agreed to have pictures taken for the rainbow trust to use in their Xmas appeal. Seeing it all in print, I have to admit, I was a bit gutted, just cause my family life was made out to be a real sob story , and I really don't like people to feel sorry for us, when actually despite everything these last few years have thrown at us, I do feel blessed ( most of the time anyway). Today I received a thank you note in the post from the rainbow trust, thanking us for allowing them to use our story, and saying that our story had already bought in more than £17,000, and they are expecting more! It's so nice to think we've been able to give something back to a charity that's helped us so much in our times of need.
Anyway, a mahoosive thank you from me and Hope to everyone who sponsored us and helped to
Pay for the very best wheels that money could buy!
Xxx
