1 week to go…

The three of usIt’s funny how the mind distorts time in ways that are never favorable.  The weather was terrible today and so I was forced to do a short training session on the turbo-trainer (cycling’s equivalent of a torture chamber).  During one of the 8 minute intervals I realized that intervals like this seem to take forever – ever single second seems to last a minute.  Conversely, when I look back over the year, I realize now that we’re already in the final week before the Ironman.  I can’t believe how quick the 6 and a bit months have gone.  It seems like less than a single 8 minute interval ago when I was out running in the snow during January.

While doing the training session, and realizing how time flies except on a turbo-trainer, it hit me…

In general, the Tri4Joe experience has and still will be a very positive one.  Not only has it raised a good deal of money for the Myelin Project UK and the ELA, but also, and perhaps more importantly, it has raised awareness of this terrible group of illnesses.

But there has been a negative side to it as well.  During the 6 months I’ve had to devote a lot of time to training for the Ironman.  Ok – I can’t complain – it was my choice! 🙂  With a full time job as well this has meant that I’ve had to sacrifice a lot of family time – and in particular time with Joseph.

We don’t know what Joseph’s prognosis is: there are simply not enough known cases of his particular type of Leukodystrophy to provide any meaningful predictions.  Having seen the geneticist on Thursday we do now know that of the four genes that can cause Aicardi-Goutieres Syndrome (AGS), Joseph has the most common (remember “common” is a relative term here – we’re talking 30 cases out of 50!), and seemingly the mildest (again – a relative term).  Children have been known to live up to 17 years or so with this sub-type and retain very simple skills.  However, on the other hand, this particular type of AGS is usually late onset and, from what we’ve read, symptoms appear when the child is about a year old.  Usually, the younger the symptoms appear, the more severe it is, and Joseph’s symptoms appeared in his first couple of months.  In fact, in hindsight, I think they were already there when he was in the womb: he never moved or kicked like other babies.

Daddy's little helper

So 6 months is a short time in my life, but it may be a long time in Joseph’s life, and I’m going to cherish every moment with him once the Ironman has finished.

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