The most common thing J and I are asked, is how we cope with everything that is happening to T. The truth of the matter is, that we don't. Not really. In a few weeks time, it will mark a year since we received T's initial diagnosis of Friedreichs Ataxia; and looking back, it really … Continue reading There aren’t enough words.
T has had swimming lessons on and off for a few years now. Its has never been an easy journey for him in the water, and has quite frequently left him frustrated and disheartened. As he's got older, finding swimming aids that don't look as if they are designed for a 5 year old has … Continue reading 1 step back, and 6 swims forward…
Following the advice of our medical team, we recently spent a considerable amount of time filling out forms to apply for some additional support for T; and to help us to continue to make adaptations to our house/general every day life. The forms were incredibly personal and very hard to complete. Now when I say … Continue reading Reports, appeals and ‘Being 9’.
This week has seen T have his first major emotional reaction to his medical conditions. As a family, we have had many emotional responses to the ever unfolding events, however, this has been the first time it seems to have significantly hit T. And hit him it did. Like a HGV. We were getting ready … Continue reading Black Thursday.
So its been all change in the Riley household this week; and I don't mean with us as a family, I literally mean the house itself. Up until 5 years ago, we seemed to move every year or so for one reason or another. We were in the wrong city for my career, our landlord … Continue reading Home Improvements
Today, I feel like I made a somewhat epic parenting fail. A few weeks ago I noticed (on the source of all knowledge - Facebook) that a new inflatable park was opening close by. Now T loves a bounce. He is a firm fan of a trampoline park, even if he can't bounce for quite … Continue reading Bouncy Castles do not make stable walkways.
So today marked my first solo venture out with T and the Mean Machine. I have been a little worried about this. Nothing to do with T as such; more my confidence and coping (driving) abilities with our new 4 wheeled friend. But I really really wanted today to go well for us both. Now, … Continue reading Bumps in the road… or loose paving slabs.