Memories of last year’s ride, and how chaotic things can get, came flooding back this morning. Once again Andrew decided to start the day without Max to give us the opportunity to have a sleep in and a decent breakfast while he pumped out some early kilometers on the bike, and while I could definitely see the merits of that, it also converted my morning to one of mild bedlam to one that contained moments of pure anarchy.
I hate to use the term ‘disabled’ to describe Max – mainly because at this point he really isn’t. When he was diagnosed his doctor told us that we were in the ‘honeymoon period’ of the disease, which at the time made me want to scream. How could the absolute worst time of our lives be referred to as something as dreamy sounding as a honeymoon? Of course I got her point, but it infuriated me at the time, and her words still haunt me on a regular basis – a reminder that we have a rocky road and tough times ahead. So while Max has DMD, at this point he’s a pretty regular 5-year old which means he’s a funny and delightful little human, but he can also be a complete nut-bag who is extremely difficult to control.
So while Andrew was battling the elements heading towards Napanee for lunch, I was in the hotel room battling Max. He’d seen the hotel gym from the pool the night before, and he had his heart set on going to check it out before we left. ‘Mumma, can we go to use the exercise equipment now? I want to go to use the exercise equipment now. Can we go and use the exercise equipment now? NOW?’ Of course I was going to take him, but a number of things were taking priority over a trip to the gym. Calling the hospital in London to check on the status of his Translarna supply (I had to leave a message), calling two reporters in Belleville to let them know the details of our arrival that day, getting an unhappy Isla off to sleep while convincing Max to bounce on the other bed while I did so, importing photos to the computer to free up space on the memory card, writing yesterday’s blog (it's pretty brief - now you know why), mixing up his daily supply of medication, packing our bags, feeding Isla who only naps for 30 mins at a time, tracking Andrew’s whereabouts so I knew what time to leave the hotel, charging up our electronics to get us through the day – and all of this to the soundtrack of Max’s increasingly urgent requests to go to the gym. Thank god Grandma and Grandpa were taking care of the food, drinks and laundry or I may have lost my mind.
I eventually got things organized to a point that we could leave our room and go to the mystical gym. Max ran all the way there, leaping all over the patterned carpet in a way that made me sure he was going to trip (he didn’t), and was ecstatic to finally arrive at the place of his Monday morning dreams. In we went. He looked around, held a 2-kilo weight above his head, stood on the elliptical machine for a minute, and was satisfied. Seriously.
Of course, mixed in with all the madness were moments of fun, and throughout all of it, for hours and hours in the heat and the wind, Andrew was out there on the bike. As crazy as things behind the scenes can get, I wouldn’t trade places with him for a second. Physically I wouldn’t stand a chance!
So anyway, we finally got packed up and drove to meet Andrew for lunch. We had a terrific picnic in a beautiful park in Napanee, and from there Max joined Andrew on the bike. Unfortunately the wind had blown up again and parted the clouds meaning it was another hot and difficult ride into Belleville. He rode in at about 5.30 where we met a journalist, a supporter of the ride wearing an MBR t-shirt, and the best thing of all... the Lindsays!
Chris Lindsay was the man behind our phenomenal arrival in Tweed last year, and this year he and his beautiful family plus a friend of Riley's, had come out to greet us once again. It was really great to see them all - Tristan and Chris unchanged, the kids just a little bit more grown up - and we chatted about things that were happening on the ride and in our lives. Of course they couldn't just come down to say hi. They had brought with them signs for Max, a generous donation, and an amazing picnic dinner with enough food to feed an army! My mind is continually blown by the generosity of some people, and the Lindsays are among the most generous and thoughtful I've ever met.
It was back to the hotel after dinner, and another early night for an exhausted Andrew. He has been keeping a close eye on the weather forecast and the percentage of the route completed, and last night he was happy to report cooler temps and the halfway point reached. Hooray!