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.
Tag: friedreichsataxia
1 step back, and 6 swims forward…
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…
Reports, appeals and ‘Being 9’.
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’.
Black Thursday.
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.
The boy with the big heart.
Today was our check up with T's cardiologist. Every appointment we go to now starts with the same questions from young Mr T: "Do I have to have any tests?" "Which Dr are we seeing today?" "Will it be the electric shock test again?" The past year has been particularly tough for our dude. He's … Continue reading The boy with the big heart.
Home Improvements
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
Just put butter on it. Put butter on EVERYTHING.
I thought I was going to end up writing this live from Ward 130 today; but luckily that is not the case. Just my living room as normal. Which, looking around it, could do with a hoover. T has had a rough few weeks on the whole. His symptoms have taken a bit of a … Continue reading Just put butter on it. Put butter on EVERYTHING.
Bouncy Castles do not make stable walkways.
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.
Bumps in the road… or loose paving slabs.
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.
Labels do not define us.
Had a bit of a tough morning today. We've been to see T's Paediatric Neurology Nurse to discuss his progress. It is clear to all who know T, that he has deteriorated a bit of late. He has become much more unsteady on his feet and we now have the 'Mean Machine' (a.k.a the wheelchair) … Continue reading Labels do not define us.
The Life of Riley's 