On your marks, get set...

Now that Max is five, it's hard to remember what the mum of a small baby gets up to on a daily basis, but from memory it involves coffee, dishes, Netflix, nursing, laundry, baby-gazing, meal planning, and a lot of time spent pounding the pavement trying to get your little one to nap. With our daughter Isla now at three months of age, my days include all of the above, plus a healthy portion of planning for Max's Big Ride. Today is the day before before we hit the road for Ottawa to undertake MBR 2.0, and our house is an absolute disaster. My to do list is a mile long, and even though I'm tired, I can already see that we'll be up late putting in place a few dozen last minute arrangements before we head off early tomorrow morning. 

I can't really describe a typical day, because each day holds something different, but today - so far - has looked like this: 

1. Rush out the door for school drop off, making sure to send Max in with thank you gifts for his teachers because it's his last day of kindergarten. LAST DAY OF KINDERGARTEN! My boy is growing up. 

2. Walk to a friend's house for coffee. I've recently met some truly wonderful people within our local community, so a chance to sit and chat before getting some work done was a welcome addition to the first half of my day. 

3. Head home and feed Isla. 

4. Empty the car of water bottles, crayons, baseballs, hats and a mountain of garbage in preparation for tomorrow's big drive.

5. Call the hospital in London to make sure that the request for Max's next supply of Translarna is underway... it isn't.  

6. Do three loads of laundry.

7. Drop off ten Max's Big Ride t-shirts to Dairy Queen. Dairy Queen have come on board as a sponsor of our ride this year and in addition to their generous donation to Jesse's Journey, on Canada Day they will collect donations and wear MBR shirts to help raise awareness for Duchenne. Yay Dairy Queen! 

8. Plant a few flowers in the front garden while Isla naps. 

9. Pull out the suitcases and start to gather together bags of snacks, toys, diapers, medication, sunscreen and other essentials for our trip. 

10. Feed Isla. 

11. Meet Andrew after he picks up Max early from school and go to a meeting at MPP Andrea Horwath's office in Hamilton. Andrea is the leader of the Ontario New Democratic Party and was kind enough to invite us to discuss the ride, as well as some of the challenges we are facing in gaining access to Max's treatment. It was great to meet her and some of her team, and to know that we are now on her radar! 

12. Feed Isla. 

13. Realise I've made a mistake on one of the Max's Big Ride t-shirt orders, and hope and pray like crazy that it is the only one. 

14. Catch up on some emails, one of which is a letter from the Federal Minister of Health, The Honourable Jane Philpott, wishing us all the best for our ride. 

15. Stuff my face with yoghurt and Triscuits because I forgot to eat lunch and I'm starving. 

16. Fold and put away three loads of laundry. 

17. Watch Isla and note that she is now able to grasp a toy and shove it in her mouth - a skill that is bound to come in handy now that I suspect she is teething. 

18. Email our contact at the City of Hamilton to finalise arrangements and request parking passes for our arrival at Bayfront Park on Canada Day. 

19. Sit with Max and read through his kinder journal, and admire the framed gift his classmates made to wish him well on the ride. I smiled as he happily told me about the hugs he got from a few of his friends when he left for the day. 

20. Read up about a new treatment for Duchenne being carried out at the University of Toronto and forward the article to Andrew for us to discuss later. 

21. Pull some lasagna from the freezer and start thinking about what I might throw in a salad to go with it. 

22. Receive an invitation to a research lab in Ottawa that is investigating utrophin as a treatment for DMD. We'll get to tour the lab and gain an insight to this promising avenue of research. 


It is now after 10pm and since this afternoon there has been no slowing down. Andrew deleted the entire route map after dinner and had to re-key the entire thing, he's about to head out on the cargo bike and stick up posters for the ride around the neighbourhood, we've received a shot list of things to film for the documentary that is being made about this year's ride, I've constructed piles of our belongings in various locations around the house ready to stuff into bags tomorrow, and my to do list is only half checked off. I'd like to think that things will settle down after today, but my gut (and experience) tells me that's very unlikely. It will be a relief to hit the road tomorrow so I can quit stressing about things at home and shift my focus to the next phase of the ride... Ottawa!