Its been a long and mixed month but tomorrow morning we are told Rosa will be getting her new seat for her wheelchair!!!! The head support will be another month but we are hoping with all our might that the remoulded seat will make her more comfortable. This is a picture of her being a superstar at the fitting last month.
This month we also got to go camping with our best friends. To our surprise we realised in her whole 13 years, despite many many camping holidays and festivals, Rosa has never slept in a tent before. We have always had a campervan but as ours is off the road at the mo we were in the trusty inflatable igloo tent. Made in the mid 60's it is a venerable old lady of camping kit but she did us proud, despite all the weather Cornwall found for us over the weekend! Rosa did remarkable well in the tent too of course, she's always been a happy camper! There was much gorgeous squealing of delight around the fire in the evenings and balloon tennis in the trailor tent while it rained. Walks were challenging as Rosa just isn't able to sit in her chair very much without becoming upset, especially over bumpy ground. We do our best to adapt to this and find ways to have fun together without Rosa needing to be in her chair. It was a really special time as a family and a little sniff of almost normal. We will be doing it again when we can.
We also went to Rogue Theatre in the Tehidy Woods which is a favourite family treat. Rosa wasn't having the best day but Rogue is such a beautiful sensory experience it is always worth the effort. The voices, the sparkles, the sunbeams through the fresh green Beech leaves, the birdsong, the smoke from the fire are all food for the soul.
With better weather has come lots of outdoor time in our beautiful garden playing on the new swing, the trampoline,the hot tub and planting lots of things. We are grateful to have such a wonderful outdoor space. It makes our tiny home perfect for all the days when it is warm enough to be outside!
Challenges continue, big and small but so do triumphs. Last week Rosa completed her first full week back at school since early 2020! She is definately still struggling with comfort levels and seizures and we are finding carrying her harder but as ever Rosa is a superstar and all being well the wheelchair update will be a big help to us all.
The other chair cover finally arrived (although the hole for the valve was at the wrong end ffs!!) in exasperation I cut a hole in the cover to get it on and be able to access the valve. We are getting the hang of it slowly, Ironically after the long wait it hasn't actually felt very useful yet but we have been out and about a lot and Rosa hasn't really been in the mood for faffing when we have tried it, hopefully we'll get it sussed on the next rainy weekend!
We still await news from the botox/saliva referral, almost time to be a squeaky wheel on that one. I think we will give them another week before we start chasing it again.
Gareth, Rosa and I have all had both our vacinnations now. We hope to arrange some in home care assistance again soon but in the meantime we sometimes steal moments when the kids are at school. We never sleep although sometimes I think we should. Today we went for a swim together in the sparkly turquiose sea, because we can, because it is important. Because sometimes it is the most important thing on the endless to do list. To walk and talk and take a moment together away from everything. If the only time that can happen is when the children are at school, so be it.
No news on housing really, except we are back on the council list as a top priority for what its worth. Trouble is we are rather darn fussy what with home being our entire world, almost! I very much swing between zen and desperation...We're dreaming of a field at the moment, so if you happen to hear of a suitable one do let us know!
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