Yearly Archives: 2020 (Page 2)

Day # 114 – September 10th, 1995

We set out from Belleville and continued heading east on Highway 2. It’s a Sunday morning and like most Sunday’s – it’s pretty quiet along the road when we are in the country.

Today, it’s also very windy and cold. I can tell that Jesse is missing Sean, who will rejoin us tomorrow. It seems like whenever I looked over, Sean was always there.

A kinesiology student at Western, Sean became a key part of our team right from day one. Sean has remarkable stamina. He looks after Jesse’s needs overnight and somehow he is always there with us on the road doing everything that needs to be done. And then a lot more.

Sean also looked after things like changing the tires on Jesse’s wheelchair (we went through six sets of tires.) The wheelchair was made of lightweight titanium and it arrived from St. Louis, Missouri, just three days before we left London. The hand breaks for the chair didn’t arrive until we were already on the road and had reached Thunder Bay. That meant I had to ‘drag back’ on the wheelchair whenever we were going downhill. There was a tether-line that attached to my belt and clipped to the back of the wheelchair so that if I fell, I went from being the ‘breaks’ to being the anchor that would stop the wheelchair from running away.

We are passed by lots of race car fans from London who are heading to the car track at Shannonville.

Arrangements had been made for Jesse and me to make an appearance at the track later in the day. We keep moving and end up passing the track and have to go back and then we were guests of Ford Motor Company at their tent where we had lunch and met lots of people.

Things are then running late when we get back on the road and push on to Napanee. The mayor is the only person there to meet us and I thought, good for him, that he took time away from his family on a Sunday to come and meet us when he only learned about Jesse’s Journey on Thursday.

When we headed back to our motel, I tried to rest while everyone else went out for supper. Sherene brought me a roast beef sandwich from Tim Hortons along with some soup, a hot cup of tea and a butter tart. Butter tarts are my favourite and I feel like I haven’t had one for weeks.

Tonight I’m fighting a headache and very sore muscles. Even my calves and biceps are sore. I think it’s muscle fatigue catching up with me. I hope I have enough left in the tank to reach the finish line.

Chris May has rejoined us on the road along with our good friend Bill Teams who has also rejoined the group as our motor home driver.

We have been without Sean for a few days as he is taking a short break. Jesse was wind burned today and he is anxious for Sean to be back. They have become very close to each other.

Ten more days to go.

(Ed’s note: Jesse’s attendant Sean Bagshaw is now Dr. Sean Bagshaw. He and his wife Heather and their two children live in Edmonton.)

Day # 113 – September 9th, 1995

One more time we are up early to head to our start point east of Trenton and heading to Belleville.

John Lees from TV London, who I went to high school with at WCI in Woodstock is back with his daughters. John and his daughters Alene and Aislin (who somehow got the nickname The Leesburgers) have been a huge help whenever they have joined us. I think the first time they were with us was in Huntsville, which seems like a long time ago. I’m pretty sure these two hard working young girls are learning some lessons about what really matters in life.

By mid-morning, the road crew asks us to slow down a bit. This is something that hasn’t happened very often. We have made up lost time and we are actually a little ahead of schedule. This gives us more time to spend with people who have pulled to the roadside to make donations. Lots of them have cameras and Jesse and me, along with the road team are happy to pose for pictures.

After a stop at City Hall in Belleville for pictures, hats, tee-shirts (and more hat pins) we take a tour of the market garden and then have a nice lunch of soup and sandwiches in Victoria Park overlooking the Bay of Quinte.

It’s Trish’s birthday and we have a cake for her. Jesse gets to give Trish some flowers we got at the farmers market. Perry Esler gives Trish a cactus that he bought at the market and makes a fun speech about how Trish has been “a thorn in everybody’s side.”

Trish has had one of the hardest jobs on this project. A kinesiology student at the University of Western Ontario (now Western University), she joined our team just a few days before we left London on May 16th, heading for the Ontario-Manitoba border.

As Road Manager, Trish had to coordinate just about everything. While a lot of planning had gone into this project, what looks good on paper doesn’t always match the reality of being out there on the edge of the highway in all kinds of weather, with a volunteer crew that keeps changing.

Despite all the training I had done, in those first few days on the road we were pretty much making it up as we went, because none of us had any actual experience. Trish made sure that as quickly as possible, Jesse’s Journey, became a well-oiled machine that was running as smoothly as possible. Every morning she double-checked that food, water, signage (aka: blank cardboard cheques) and clean dry clothes were always ready in the escort van.

Trish handled her assignment with dedication and with class. It wasn’t always easy being second guessed by others. Trish had that unique ability to flex in a hurry on a job where no two days were ever the same.

And through all that, she remained a loyal and good friend to Jesse, always keeping his well-being in the front of her mind.

There’s a bit of a changing of the guard after lunch as Perry and Ron are heading back to London. Perry gives Jesse a big hug and says he has “two new heroes.” He is very kind.

We pushed on through the afternoon, making it past Shannonville before the next volunteers arrive – Ed Busko, a retired Bell worker from London and Sherene’s brother Glen joined us.

Dinner was at a place called the Golden Griddle (beef stew) and it was a nice surprise when a parts manager for General Motors bought dinner for the whole team. People are really good to us.

Then it was back to Howard Johnsons for the bath and hair wash routine and a welcome sleep. And that was Day # 113.

Day # 112 – September 8th, 1995

(Ed’s note: Normally this is the day school would have started in Ontario. Counting the time it took us to drive from London to Kenora and then another 53 kilometres to the Ontario-Manitoba border, this is the 116th day that Jesse has been on the road. In a way, it’s been an amazing class where at times it seems like Jesse is creating a whole new course that kids everywhere can put into practice. I hope they will when they get back to school.)

First thing in the morning, we drive to Brighton, just west of Trenton, and meet our OPP escorts at our start point. This is definitely a fall morning and it’s the coldest day we have faced since back in May when we were in Kenora on day number two of our journey.

We start at an apple orchard and Jesse and I really pour the coal to it and we have 18 kilometres finished well before noon.

As well as collecting donations along the road, Perry Esler and Julie Sandiland and I have a chance to talk about the media in general and where we think it is going (or not going.) None of us has a very good feeling about what the future holds in that industry.

The sun is back, and we are moving quickly but we also made sure we stopped and shook hands with kids that had been brought to the roadside by their moms to see Jesse. We also stopped to shake hands with a group of senior citizens who have also come to the side of the road to meet Jesse.

Sometimes people bring their little dogs with them and it becomes a bit like kissing babies during an election. Pretty soon I’ll have Jesse back home with his own furry friend, Charlie.

A lady from Scotland gives Jesse a kiss (I’m not really sure he likes this part) and she tells me I’m a great inspiration for father’s everywhere. I don’t see it that way. I think I’m doing what any dad would do if he found himself in my position. You do everything you can to make life better for your children. It’s that simple.

In the afternoon, we see a lot of plain grey military planes on their final approach before landing at CFB Trenton. Ron Calhoun and I talk about the coming days and he starts to fill me in about what will be happening when we get to Ottawa. It’s hard to think that we are getting near the end.

Jesse was cold and tired when we wrapped up our day on the road at 28 kilometres completed. Sherene is also looking very tired. I want her to go home and rest, but I don’t think that is going to happen until this journey is over. Tomorrow – Belleville.

Day # 111 – September 7th, 1995

(Ed’s note: As I mentioned yesterday, today, September 7, 2020 is World Duchenne Awareness Day (W-DAD.) There are a lot of places in Canada that are being lit up in red tonight. Places like BC Place in Vancouver, and the tower in Calgary along with the CN Tower in Toronto. Niagara Falls is being lit up in red. And of special importance, Duchenne families across Canada (including the Davidson’s) and families who are fortunate to have never been touched by Duchenne are lighting their homes in red in a show of support. It’s a gesture that is uniting us as Canadians in a fight against a terrible disease. At Jesse’s Journey we have had calls from Europe, and people in the United States are taking up the cause in lighting landmarks and businesses and family homes to raise awareness as a part of what we do on the road to a cure.

Today, I am sending long an important link for you.

Sometimes people ask me about Jesse’s Journey and I always think that if a picture is worth a thousand words, the pictures can probably tell the story better than I can.

The documentary link below gives you our story. It runs 19-minute minutes (about the time it takes to sit down with a cup of tea or a cup of coffee) and will show you how Jesse’s Journey came to be. And even more important, it will give you a snapshot of what is being done on the research front and you’ll get to meet some of the Duchenne families who have made a huge commitment to research. Just click on the little arrow and the documentary will start.

I hope you will take the time to have a look at, at least a part of our story. It will mean a lot to all those boys who show us every day what real courage is all about.)

Day # 111

It started raining early in our day and the forecast showed it raining all across the lower Great Lakes. These are the kinds of days where we have to step up our game in terms of taking care of Jesse. His care is my number one concern.

We managed just two kilometres before the weather forced us off the road. This usually means a lot of phone calls to rearrange things up ahead, and it also means I’ll be asked to pick up the pace to try and make up for lost time.

We received a $100 donation from the local fire department and then we sent them on their way as there is no point in holding them up. This is the kind of day that Trish and the road team have to do a lot of joggling. They called ahead to adjust our arrival time in Trenton. The good news is that after getting some lunch, I am going to have a chance to sleep through a part of the afternoon. It turns into an afternoon of maintenance work for everyone on the road. Trish went to a walk-in clinic to get her throat looked at as she has been feeling pretty rough the past few days. I did a couple of radio interviews with stations in Ottawa, while Perry arranged an interview with CJOH-TV. We’ll shoot that one tomorrow. Perry and a couple of other volunteers then took Jesse to play pool after watching Columbo. I went to sleep.

After dinner, Ron Calhoun joined us and there was a meeting about stepping up the pace in light of losing time today in the rain. I’m going to have to make up that distance over the next couple of days.

We also had a call from London to say that the London Knights want to honour Jesse at a game in early November.

And that’s how we spent a soggy September 7th, 1995 on the road.

Day # 110 – September 6th, 1995

(Ed’s note: At the time I am writing this (Sunday, September 6th, 2020) we are at the eve of World Duchenne Day. This is a day that did not exist on the calendar when I was pushing Jesse across Ontario in 1995. Tonight and tomorrow, hundreds of buildings across Canada, including the CN Tower (and our house) will be bathed in red light to mark the occasion. A lot has happened on the research front since those days on the road twenty-five years ago, and Jesse’s Journey is proud to be Canada’s leader in funding Duchenne research.

But—when it comes to a cure—we are not there yet.

Jesse’s Journey has become a family of families and to see how you can play a part, please visit:

www.jessesjourney.com

In the times we are now living through, there are lots of things that are being done differently—including our annual walk. When you visit our website, you can see where you fit in, and how you can be one of those people making a difference for others. And, it doesn’t matter where in the world you live. At the click of a button you become a part of our story. (And, if you are on Facebook, please hit your share button to give your friends the opportunity to join the family of families in making a difference.)

I have always believed that the best leaders are those who lead by example. Here in London tomorrow, the Executive Director at Jesse’s Journey, Perry Esler (and his wife Niki) will be walking 33 kilometres as a part of the hundreds and hundreds of people across Canada walking to make a difference. This is what I call real commitment.

Yesterday, CTV aired a story setting the scene for tomorrow’s walk. Here’s the link that is your pathway to seeing not just what has been done – but rather, what can be done if you help.

https://london.ctvnews.ca/chalk-artist-draws-jesse-s-journey-mural-in-downtown-london-ont-1.5093994

Thanks for being a part of the family of families at Jesse’s Journey.)

Day # 110 on the road is the first day that has a cool ‘fall like’ snap in the air. The air temperature was great, and we made good time on the road, arriving in Port Hope at 9:30. We did an interview with CHEX TV from Peterborough.

We pushed on to Cobourg which is a pretty little town and we were given a tour of the very English looking courthouse and the opera house on the upper level which has been fully restored.

It’s a fairly quiet day along the road. Perry Esler and Julie Sandiland are with us from CFPL-TV and they have lots of time to talk about where Jesse’s Journey might go in the future.

It also seems a bit funny to see school buses back on the road and it reminds Jesse and me of just how long we have been out here. School buses were still on the road for the final five weeks of the last school year when we started our journey before the summer holidays arrived. There were no holidays for Jesse and me.

Some people brought their little kids out to see Jesse and a couple of women gave Jesse a kiss and said, “God bless you.” We hear quite a lot these days.

After dinner (pizza) I spent a long time on the phone doing a newspaper interview. It took longer than most interviews, but I just look at it as part of getting the job done and it’s going to be a long road ahead.

When we got back to our motel in Cobourg, we got to see the Baltimore Orioles Cal Ripken play in game number 2,131. We were seeing a bit of baseball history on this day as he broke Lou Gehrig’s consecutive game streak, a record that was set in 1936.

The good news tonight is we have just 14 days to go. The bad news is the weather forecast is once again not looking good. But, we’ve been in rain before and probably will be again. I keep reminding myself every day that we are in this for the long haul. Quitting is not an option.

Day # 109 – September 5th, 1995

Today is the first day of school and as we head back out to the road for another day, my thoughts are back in London. Sometimes I think I have asked too much of Jesse, and too much of his brothers Tyler and Tim. I’ll have to make it up to them when we get home.

Our day starts out with us getting lost. (It’s not the first time this has happened.) We arrive in Bowmanville at 9:15 and by 9:30 everything has been checked, batteries, water, ice, snacks, clean towels and additional clean journey shirts for Jesse and me and the road crew. Two more helpers from London, Sonja and Anwyn from the television station have joined us for the day, and as soon as we are on the road, they are right into working the traffic and collecting donations. As I push Jesse along the road, I have a feeling that I don’t have the stamina that I started out with at the Manitoba border more than a hundred days ago.

We have been blessed that no one has been injured on this journey, but there were sure some strange happenings on the road today. A lady who passed us and is looking back and waving, almost runs into our escort van. Then there was a motorist who ran into the sidewalk and ruined a couple of hubcaps, but still made a donation. Fortunately, neither of these drivers was going very fast.

The most interesting donation of the day was from a farmer who was working a field with a wagon and two horses and stopped what he was doing to come to the roadside to make a donation.

And then the day got stranger.

At noon hour there was a change of guard with the OPP and we got a new escort officer, a lady named Kelly, and she was great.

We were approached by a man who said he was ‘missing’ from Kingston. It was evident to me that he was struggling with some form of mental stress. He
said he hadn’t eaten in four days. When he got into the police cruiser to ride for a while, I cautioned Kelly that when this man is sitting in the front passenger seat, he is sitting on your ‘gun side.’

A short while later two OPP cruisers arrived and the officers took the man away. Kelly meanwhile chased two other drivers, one who passed us going too fast and a second driver who had no current license and crossed a double white line in in passing us in a truck with no muffler. Kelly told him to ‘get that thing off the road.’ And then there was another driver passed us and then backed up at about 60 miles an hour to make a donation! All in all, a pretty strange day on the road.

At the end of the day, we drove to our motel in Cobourg but had to wait on the main street for a movie crew shooting a chase scene. I don’t know what the movie was called but one of the actors was Kelly McGillis, who was in Top Gun. It has been a summer of trying to make sure that Jesse also got to the movies. Like a lot of kids, he wanted to see the two big movies of the summer, Batman and Apollo 13. We made sure he saw them both.

We had dinner at our motel and while Sean looked after Jesse, Sherene and I had a chance to talk alone. It seemed like this was the first time in months that we were able to have that kind of conversation.

After Sherene left I went to bed. My neck is very sore, and my muscles are tired. I’m getting very close to being ready to go home. Sonja and Anwyn both told me I looked exhausted. I hope they’re wrong. 15 more days to go.

(Ed’s Note: If you are enjoying reading these reflections on the early days of Jesse’s Journey and you are on Facebook, as part of the Journey ‘family,’ I’d like to ask a favour. If you could press the share button on your Facebook page, your friends and a lot of other people will also see these stories. We have come a long way together — but — we still have a long way to go to get to a cure. I want to give everyone in Canada and around the world the opportunity to participate in Jesse’s Journey. I’d appreciate your help in spreading our story. Thanks very much.)

While we are almost back to where we are travelling in a straight line when it comes to the road, our start point is at the Halton Regional Police headquarters as we begin making our way east from Burlington. When I think back to when we started, we are a long way from those first days on the road in Northern Ontario when no one had ever heard of us and things were sometimes very quiet.

Now, things are very busy on the road and people seem to know who we are and what we are doing, and, they are being very generous. Sherene and Ron Calhoun join us at mid-morning. I’m happy to see Sherene and Jesse is happy to have his mom along for the day. More and more I am realizing how much I dislike being away from Sherene.

We had lunch in a park along the road before pushing on through Oakville. Once again, we are lucky and blessed to have great helpers along with us. Helen Wainman from the CFPL-TV newsroom and her husband Gord are working like mad along the road. I can tell that their feet are hurting, but they keep working car windows and soldiering on.

At the end of the day we move back to the Comfort Inn, in Oshawa. From here on, our route resumes a straight line as we have had to do a lot of juggling to get through Toronto and the golden horseshoe, touching as many communities as possible.

We are now a little deeper into September and in the back of my mind, the countdown to Ottawa is starting. I’m pretty sure Jesse is thinking about the days ahead and getting back to school.

The good news today is that we don’t have to change motels, although we had a long drive from Oshawa to get to Niagara Falls. When we arrive at our start point and meet the police, we are also overloaded with volunteers. I pushed Jesse through Niagara Falls and at lunchtime we stopped at Brock’s monument (I hadn’t been there since my grade 8 school trip) and some of our volunteers organized a mid-day game of football on the grass at the park. Our lunch came from a huge ham that the wife of my old friend Howie Hilyer had sent along. Howie was the man who took me under his wing when I started my radio career in Woodstock. The ham we had at lunch came with a note saying how much Howie would have ‘enjoyed driving that motorhome for Jesse.’ Sadly, Howie had passed away before anyone ever heard the words “Jesse’s Journey.” He was a good guy and helped me a lot.

In the afternoon I pushed Jesse through Niagara-On-The-Lake where we met old friends, Val McGarry, Pat Goodland and Phyllis Bennett (I hope I spelled their names right). We also collected a pretty good amount of money, including a donation from an Elvis impersonator! You meet everybody out here on the road.

Before we headed back to our motel, we took Jesse down to see Niagara Falls. I’m sorry that nobody in our group had a camera. I would have liked a picture of Jesse and the falls. Maybe another time.

It’s a good thing I am burning up a lot of calories on the road because sometimes our meals are not as healthy as they should be. We had dinner at Doug Gilmour’s (Nacho’s and pop) before the drive back to Oshawa. In the morning we will have to drive back to Burlington to pick up our route once more, but at least we are getting back to moving in a familiar pattern rather than the hopscotching we had to do in Toronto and the golden horseshoe. While it paid off financially, I will feel a lot more comfortable knowing we are once again moving in a straight line toward Ottawa and the finish line.

I think it has to do with the amount of time we have spent on the road that I am feeling tired, sometimes even during the day. Jesse is doing great and in seventeen days, we can all go home.

Day # 106 –September 2nd, 1995 This is another of those days where we are up very early. There is going to be a lot of shuffling around today as the route plan has us driving from Oshawa back to Dundas so that we can take in Hamilton and St. Catharines on a Saturday when there are lots of people on the road.   We keep adding more pins to Jesse’s hat and he keeps smiling and thanking people who have taken the time to come to the side of the road and to make a donation.  Holding Jesse’s arm up so he could shake hands with so many people sometimes slows us down, but Jesse and I both know the value of saying ‘thank you’ to people.  The mayor of Dundas joins us as I push Jesse up what turned out to be a much bigger hill than I was expecting.  We have lots of volunteers with us today including Helen and Gord Wainman, Chris May, Haanam Hamouda and Perry Esler, all co-workers from London. I can never thank these people enough for all they have done to keep Jesse’s Journey moving toward its goal.   On the road we stopped to do an interview with CHCH-TV in Hamilton and with CHML 900 radio in Hamilton.  In St.Catharines we are greeted by the Fire Chief and the guys at the fire hall have a really nice lunch laid out and this is really a treat after so many days of fast food outlets over the last week.  Late in the day, our Road Manager Trish Federkow, takes me to a chiropractor who has worked on a lot of NHL players. His reception room is filled with all kinds of NHL memorabilia. Then it’s back into Hamilton for a 6:00 p.m. press conference where we received several cheques and we have an opportunity to show our video and it’s pretty obvious to me that a lot of people in the room are very moved by what they see.  Last night it was the wheelchair tires that needed changed and tonight, after dinner, we discovered that one of our vans has a flat tire. It’s like the tire gremlins are out to get us. We quickly get the tire fixed and head back to our motel. It’s been a long and different kind of day. I like it better when we can keep moving in a solid line of consistency. But I understand the need to include as many parts of Ontario as possible in the route, (and to keep our overall distance correct) in order to raise as much as we can for research.  Tomorrow it’s Niagara Falls.

(Ed’s note: With the start of school approaching here in Ontario, over the next few days I am going to add some thoughts about school kids and what they are capable of accomplishing. Perhaps you might want to share some of these stories with the young people in your life.)

Day # 105 – September 1st, 1995

We are now into our fifth month on the road. Jesse is doing a great job and he never ever complains. I know that this is the month that school starts, and I want to get him home as soon as possible.

With our OPP escort behind us, people started making donations as soon as we left Whitby. There are a lot of hills along this part of the route, but the fact that people are donating makes a big difference when it comes to pushing Jesse up those hills. We managed to make Oshawa by 11:30 in the morning.

Our OPP escorts have always been great. I remember a day in northern Ontario when Sean Bagshaw was wearing a rainbow coloured belt and he and our OPP escort switched belts, just for a moment so we could take a picture. He was sure a good cop.

We did a lot of radio and television stuff while we were moving down the road. The temperature was good, and Jesse and I were making good time on the road. We can now move a lot faster than when we were coming through Toronto.

The faster pace on the road makes it a little more difficult for some of the more senior volunteers who have come out to help. They are doing a great job in collecting money, handing out brochures and doing all those things that have to be done to keep our little parade moving along the road. At the same time, I have to urge them to take breaks more frequently. I don’t want these wonderful helpers to get worn out, but Jesse and I have a need to keep everything on time in regard to when we finish in Ottawa. While Jesse hasn’t said anything, I’m sure he’s anxious to get back to school.

I also find it interesting how things have changed since we were in northern Ontario. In the north there was probably less traffic and in the early days and we didn’t collect a lot of money on the road but did very well in small town Ontario. Now that we are in the south part of Ontario, we are doing much better on the road than in big towns or cities. We always do well in small town Canada.

We finished or day on the east side of Bowmanville and then head to the home of Nick Paparella’s in-laws for another barbeque. Nick is well known to the TV audience in southwestern Ontario and he has been a longtime friend. He has always been very kind to our boys.

When Jesse was little Nick would take Jesse and Tim for a car ride and sometimes, when the situation was 100% safe, he would let the boys sit on his lap and “steer” the car. Nick used to make things up about how good his car was. He would take words from television commercials, mix them up and then tell the boys things like, “Oh this is a great car. It’s got radially tuned suspension!” The boys were very impressed.

The weather was good today and Jesse did very well. He enjoyed the food and conversation with Nick and his wife Evelyn at the barbeque, and then it was back to the motel for the bath and hair washing routine.

Sean and I spent time working on the wheelchair and changing tires. And so it went on Day # 105.