3 weeks to go…

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 south of Grenoble?  This was the first time that I’ve done this sportif and my friend Ed Nichol (a.k.a. sporting legend) told me that it would suit me as it didn’t have too many long steep climbs.  The problem was that most of the steep climbs were right at the start, so it wasn’t long before I was riding solo!  Then, after 110km, I got a puncture which was bad news since I’d already had two on the way to the start of the event and this was my last spare inner tube (i.e. SOS phone home if the last one goes pop!).  So, realizing that the problem was due to a fault with the wheel itself rather than the usual bits of glass in the tyre, I pumped the tyre up to a very low pressure and rode very slowly and very carefully to the finish.  The good thing about this was that I had plenty of opportunity to look at the amazing scenery in the Trieves region around La Mure.  It is truely stunning and I have to say that this sportif is now my new favorite – even more than the Challenge Dauphine that I did a few weeks back.  At the end of the day I had ridden 205km and I felt every one of them in every bone in my body! (thanks to Guy and Helyn for waiting for me at the end).

The ups and downs of Leukodystrophy

After the cyclosportif Colette and Joseph met me in the car and we all went to a midsummer’s barbeque.  But this was a BBQ like no other – a spit roasted pig!  It was delicious, but the star of the show was the spit roast itself – a Wallace and Grommit style DIY job.  Pure genius.

While we were there Joseph did something that he’d never done before: he repeatedly tried to put his dummy in his mouth.  This was a big step for Joseph since, despite how much we’ve tried in the past, he’s never really understood what hands are for.  Or has he?  Come to think of it, about a year ago over a period of a few weeks, he did try to feed himself with a spoon.  We were excited then, but then just as with many of Joseph’s developmental milestones, the skill simply disappeared as quickly as it had come.

We’ve noticed that this pattern is something that is symptomatic of Leukodystrophy: as fast as the child’s brain is developing, it is also being destroyed.  As soon as a skill is acquired, it is lost again a few weeks later.  When people ask us “is he developing?”, we are unable to give a simple straight answer – in some ways he is, and in some ways he’s not, and in other ways he’s got worse.

Joseph doing his swimming exercisesIt was only a couple of weeks ago that Joseph was much more “tonic”: he was almost able to sit up unassisted; he would try and stand up when held; he even acquired the classic knee reflex (where the knee jolts when tapped with a hard object just below the knee cap) – Joseph’s never had this reflex because the nerve signal was lost somewhere in the round-trip between his knee and his brain.  I was very excited by this and proudly told the neurologist when we saw her soon afterwards.  She gave me a sad “oh dear we have a proud over-optimistic father here” look and repeated the test and, of course, nothing happened: the reflex had gone.

We’re getting used to this now and never really get too excited when Joseph does new things (actually that’s a lie – we do get excited but we know we shouldn’t!).  Our coping strategy is to just live in the present and accept Joseph as he is today.  We don’t know what the future will bring, and we don’t think anyone else does either.

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