1 week to go…
It’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.
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.
July 7th, 2008 at 10:07 pm
Matt, Collette and of course Joseph
Our thoughts are with you all, along with all the other Goads,Newmans,Freemans,Swifts - and hope you Collette and Joe can put up with Matt [the swimming T-Rex] when he COMPLETES this race, as we are sure Collette would have done it too
- for the love of their son
With love and best wishes to you all and very good luck Matt on this stupendous effort
July 8th, 2008 at 2:53 pm
Hi Collette, Matt and Joe!
Remember me Niamh O Connor, well by pure chance i saw your article in the Echo last week. You haven’t changed a bit how do you manage to stay so young looking!! (Botox!!) Anyway, i wanted to wish Matt good luck next week and to say that Joe is a beautiful little man and to see him looking into your faces he seems really happy and full of love. I have three of my own Ronan 5 , Laura 3, Ornait 1, and am kept busy. I think everyone puts themselves in your shoes and tries to imagine how they would cope in the same situation and i think you are both very positive and upbeat while admitting to having your moments too. Anway, good luck with everything.
Lots of Love Niamh
PS On another note, my oldest memory of you is being the best in the class at ‘German Jumps’ i could never beat you!!!!
July 8th, 2008 at 3:09 pm
Best wishes to you and good luck.
Thank you so much for supporting us.
Avec tous nos encouragements pour ce grand défi et une pensée amicale à toute la famille.
July 8th, 2008 at 10:09 pm
Matt,
Dernière ligne droite avant Ironman. Ton courage et ta volonté sont exemplaires !
Myriam, Yohan, Chloé et moi vous souhaitons, à Colette, Joseph et toi tout d’abord un bon voyage vers Zurich où se déroule la compétition, mais surtout que tu remportes le challenge que tu t’es fixé avant autant de succès que ta récolte de dons.
Nous serons avec vous par la pensée.
Didier & Co
July 9th, 2008 at 3:37 am
Hiya Matt, Colette & Joseph
I think you’ve heard that me and 6 OPs - Bashers, Disco, Oz, Dave Hickman, John Mulvaney & Jezzer Hancock rode Lands End to J O’Groats a week ago. My initial report on the ride is on the Blackheath & Bromley Harriers web site http://www.bandbhac.org.uk which will give you a flavour of how it went until a detailed account becomes available. I did the ride to raise funds for my own special interest, namely The Cure Parkinson’s Trust- Movers & Shakers and I’ve managed to raise a fair bit of cash. I was about to lob some of my own into the pot when it occurred to me that I had effectively donated handsomely already in that I funded the substantial cost of my doing the ride. So, I decided to put my wad somewhere else that needed to be moved and shaken and I’ve given it to you.
Matt, you’ve got a very special event this w/e and the 2 most important things are to enjoy it and to finish; this is not a race for fast times, PBs or any other such heroics. You have a clearly defined job to do here of raising money for and raising awareness of Leukodystrophy. Trying to perform to your limits and getting caught up in the racing will detract from this and is NOT part of the job. Seeing you banging your brains out and covering yourself in snot can be very off-putting to the uninitiated however noble the cause. Being hard-wired as a talented athlete as you are, it will be hard to ignore the temptation but I suggest you must if you are going to undertake fully the role you have taken on yourself ie. leading a campaign to find an answer for little Joseph’s difficulties.
I shall be in touch again after the dust has settled from the tri.
All my love and best wishes to you all.
Les.
July 9th, 2008 at 3:43 am
You guys are awesome! We are sending you lots of strength and love from Austin.
Go, Matt, go!
July 9th, 2008 at 9:39 pm
Dear Matty, Cletty and Joseph
We’re thinking of you and wishing you lots of swim, cycle and run power for this weekend. Go Matty go! You can do it. And good luck to Cletty and Joseph spectating - that’s exhausting too!
It’s been so moving to read your blog and seeing the pictures of you all - thank you for sharing it.
Lots of love and best wishes and good luck for Sunday again.
Mez
xxxx