I watched Joseph drift off to sleep tonight and the usual thought ran through my mind – he looks so perfect. I sometimes don’t want to or can’t believe that Leukodystrophy and the heartache that it brings is part of our everyday lives. Joseph is now 2 years young and is still not rolling, sitting [...]
On Monday, Joseph enjoyed playing with a big blue balloon at the psychomotricienne’s, whilst I had a bit of a moan about not coping very well with complete strangers asking me what’s wrong with Joseph. I don’t want to be rude, but there are days when you just want to do your shopping in peace [...]
I did the second of my two big “brick” sessions on Saturday (remember a “brick” is a training session consisting of biking and then running). I decided to take the advice of my friend Gary and switch the 106/28 and 106/35 sessions. So Saturday I did the 106km bike followed by 35km run. One word [...]
We’re so delighted to read tonight that Shane Stokes of IrishCycling.com has very kindly posted a note on Matt’s Ironman. On the UK side of things, Lynda Carthy from the Myelin Project UK has also included a write up on their website in the fundraising section. We are very touched and humbled by the support [...]
Finally the sun is shining in the Alpes. Whilst northern Europe (according to my parents) has been basking in summer for the past month or so, we’ve been having to deal with constant rain and cold. So what better way to celebrate the sun and heat and go and do the “La Mure” cyclosportif just [...]
Whilst feeding Joseph at lunch time I noticed an appeal on telly that made my heart leap. It started off with Zinedine Zidane kicking a football against a steel gate and every time the ball hit the gate, the ball fell to the ground. The voice-over said (in my best French/English translation): ‘Leukodystrophy paralyses many [...]
I swear I only wrote “5 weeks to go” yesterday! Where does the time go? It’s official: not only am I nervous, but the panic attacks have started. I had my first “losing control” dream last night. I get these a lot whenever I’m stressed by something. These dreams often involve my teeth crumbling to [...]
We don’t know where to begin. Thank so much everyone for all the kind comments and words of encouragement, they mean a huge amount to us. We’ve been bowled over by the number of donations so far. It’s been only a few days since we let friends and family know about this blog and we [...]
So while I’m busy messing around swimming, biking, and running, what is Joseph up to? Joseph has a very busy weekly schedule, as does his poor mum who has the job of taking him everywhere. Joseph needs constant care and physiotherapy. Unlike other children his age, Joseph is not capable of very much physical movement: [...]
While Joseph is taking a quick nap, I thought I’d make my debut input on the blog to give you a quick update on how he’s doing. He’s 20 months old today and just getting over a bout of some horrendous gastric bug. Other than that, he’s in good form and his appetite is coming [...]