“There’s one more kid that’ll never go to school, never get to fall in love, never get to be cool.” (Neil Young)
Spending time with Caleb this weekend one thing that stands out is you can never watch “Planes, Fire & Rescue” too many times.
I quite like the film, it’s not particularly annoying, has some humorous moments and it’s fairly short but on Friday evening I watched it 3 times, Saturday morning 3 times, this morning I watched it twice then again once this afternoon.
But the most important thing I remember is Caleb being blown away by it.
Yesterday, watching with Poppy, Matt & Liz he continually repeated “Planes! Planes!” thrilled by what he was seeing and wanting to ensure they also realised how lucky they were. Continue reading
“Cold rain running down the front of my shirt, flat on my back wheels in the dirt” (Bruce Springsteen)
In the first week of August Rod and I will wake each morning, admire the view from our window,
dip a stick of dried Reindeer in our coffee and set off for another day on the Tandem.
You, on the other hand, will be frantically sat in front of your computer waiting for the next update. You’ll be desperate to know what we’ve got up to that day or desperate to know we’re not dead.
To ease you in gently I thought I would remind you of some of our previous episodes. Continue reading
“Since you’ve got to go
Oh you had better go now.
Go now. Go now. Go now” (Moody Blues)
One of the most confusing things about professional cycling is how they use the toilet when in a race lasting all day.
There’s a good explanation in this article but the answer is basically they just go. If you see a peloton with lots of people sky-watching or looking around aimlessly the guy in the middle is probably going to the toilet.
Obviously it would be better to stop and seek some refuge but ironically it’s an offense to do so! Continue reading
“And everybody knows, these are rock hard times, I’ve gotta make it through, these are rock hard times” (Eels)
Those of you lucky enough to spend time with Ellie Mae & Caleb will know they have very different personalities. The disease they share doesn’t personify them, they are their own people.
Ellie Mae was always emotional. She squeals with delight when she sees Poppy, Leah or Grandma, that hasn’t changed, she just pulls your hair a bit more these days when playing. Continue reading
“You just have to be crazy, don’t you?
You just have to be out of your mind” (Grant Lee Buffalo)
I’m the sensible, doubtful one of our partnership, Rod the happy-go-lucky lunatic. I like to be sure our goal is achievable. I don’t mind hard work, I just don’t want to be rewarded with certain death. But every adventure needs one mindless fool if it wants to really get off the ground (sometimes literally)
Where would we be today if instead of saying;
“What this bike needs is wings”
Orville & Wilbur, had said to each other
“I don’t think it’s gonna go more than a couple of foot!”
And so Rod and I also find ourselves fending off negative views of our plan. Continue reading
“And I didn’t know if you knew
So I’m taking this chance to say
That I had the best day
With you today” (Taylor Swift)
(You may have noticed I quote a lot of Taylor Swift. Caleb’s a big fan)
It’s interesting the things I’m learning as I try to tell you something new each week. I’m sure if I wasn’t writing about our adventure I wouldn’t have done nearly as much research, Rod & I would just go and see what happened.
I’ve just learnt that not only does my old University host a Rare Disease Day event every year but also the University’s mascot is a bear, coincidence?
“Come on baby with me, we’re gonna fly away from here
Out of this curtained room in this hospital grey, we’ll just disappear” (Taylor Swift)
I don’t like categorising children, I don’t call Ellie Mae & Caleb “Special Needs Kids”. They have special needs, absolutely, they need lots of support but they don’t need a title suggesting they are less than other kids.
But it’s these special needs I want to share with you. Continue reading