Orlando, FL, New York City, NY, Chicago, IL, Phoenix, AZ, Anaheim, CA, Cincinnati, OH. These places are linked by one common thread. These cities are host to marathons which Parent Project MD has secured slots for families, friends and others are able to run to support the Run for our Sons program. Just over five years ago Kimberly Galberaith had been convinced that PPMD should get people to run at Disney World as a fund raising vehicle. Kim spoke to several participants at the Annual PPMD Conference seeking interest for such an event. I was one of the people she asked. My wife Alice happened to be with me and suggested that because I was running several days a week I should be able to do this. I can’t remember if I thanked Alice for getting me into this as I have such a hard time saying “no” to Kim!
There is a lot of difference between running two miles every other day and training for a half marathon (13.1 miles), but being caught up in the moment (Or a clever trap set by Alice.) and always interested in helping PPMD I agreed to run. At the time the prospect of raising $1200 was more intimidating than being ready for the race. We are not well connected and have few wealthy friends, yet I decided it was the right thing to do having learned that less than half of the families who belong to PPMD ever provide financial support either though fund raisers or individual donations. This was an opportunity for me to give back to an organization which does much for those affected by DMD.
Once Alice and I returned home from that Conference I began investigating ways to train for the half marathon distance online. I knew no one personally who had run this distance which would have been a great help. Being naïve I figured I could add a few miles just before the race and do fine. The more websites I visited the more I realized I needed to get busy. I wanted to finish the race in a reasonable amount of time and did not want to turn into Jell-O at the end. As the summer months waned I began developing a plan to raise money and started running a bit further each week.
I took the car and measured the course I had been running and went further as I wasn’t running more than a mile or two at that time. It was a bit deflating learning what I thought was a mile was a bit less. What was more troubling was adding miles wasn’t as easy for me as I planned. I began to think “this is really going to be work”. Being a bit stubborn, I kept pushing myself.
The fall is a great time to run in Maine. The temperatures are cooler and the air is drier. Soon I had to wear wind pants over my shorts and not long after added a light jacket, gloves and a hat as the temperatures dropped further. By now I had also been soliciting friends and family in earnest and had raised a bit of money which was encouraging. By mid-October I was well on my way to meeting the minimum goal to run, yet I hoped to do better. A dear friend of my family offered to host an evening open house and invited people she knew in addition to a list of friends and family I had provided. Her party was a great success and I collected over $2000 that evening. Knowing I had met my financial obligation was a big relief and motivated me to work harder on the training.
A local paper ran a story about my plans to run for PPMD. The article was more about what life was like for our family, yet it raised awareness and it got me some additional donations. People I worked with read the story and couldn’t believe I planned to run that distance. Many told me they got tired driving that far. I heard how running ruins a person’s knees or was bad for the heart and many other discouraging and ill informed comments, but I kept working at it. Doing something my fellow workers saw as being so irrational just gave me more reason to want to do well. Besides, friends and family sponsored me and I didn’t want to let them down and I really felt good after running. Many people I knew wrote checks and sent letters of encouragement, so I had to finish what I started.
I learned to run in snow and rain and found I didn’t get cold. I measured out longer distances and regularly ran five miles several times a week and shorter distances in between. November passed and the longest I had run was about seven miles. It seemed to take forever. I decided to set a goal time for the race. Based on how much I had run and how long it was taking I figured I might be able to run nine to ten minute miles. I thought it was aggressive, yet I hoped to finish in less than two hours, if I didn’t collapse trying. Getting closer to January I started getting nervous.
December went by like a blur. I made reservations to fly to Florida booked a hotel room. A few days before Christmas I went out and ran eight miles. This was the longest I had run and the longest distance in my training schedule. The next week the schedule suggested taking it easy to reserve energy for the big race. And the following weekend I was in Florida with other families also there to run in support of a loved one who had DMD.
Meeting other friends and families affected by DMD in Florida was different than at the PPMD Annual Conference. We knew each other because of DMD and we were doing something to help fund research. There was no pressure to spend hours listening to researchers like at the Conference, it was more intimate and we were at ease talking with each other because we all understood what it was like living with DMD. We talked about family and shared experiences while waiting for a long morning run. It really was difficult for me to be in a warm place away from my family, but it wasn’t a vacation and I stayed focus on the reason for being in Florida. That year the marathon and half marathon started together the same morning. Late Saturday evening after chatting with friends and getting my fill of pasta I went back to my room to prepare my running clothes and tried to get some sleep. Lots of things went through my head as I really didn’t know what to expect, but I was there with people I knew and cared about making it easier.
The race begins at six, but in typical Disney fashion everyone has to get out early and into a line for the bus, to go to the parking area to line up to check in your bag of dry clothes and then walk down to the corrals to line up and wait to run. At five in the morning we were dropped off near a parking area that had been converted as a staging location before going to the start line. There was music blaring and regular announcements about getting to the corrals and blinding bright lights. It was a sensory overloading experience for such an early hour of the day. One thing I remember most vividly were all the Porta-Potties, there must have been over one hundred just in the parking lot where we dropped off our bags. Despite this fact I was unprepared for the people dropping their shorts at the edge of the woods to relieve themselves on the way to the corrals. All I saw were white knees and white cheeks for the women and men braving the bugs and cold to take care of “business”. As I got close to the corrals I saw another sea of Porta-Potties and so many people lined up to use them. Maybe that was why others used the woods. The runnerss were all pumped up, excited about the race and I was so unsure of what to expect and kept moving to my corral. It was like Woodstock for runners who all looked to me like they lived on water and Tic Tacs they appeared so thin. And soon it was time to run.
Again, as is typical for Disney there was much fanfare, fireworks, music and people on the PA announcing the start of the race and soon we were running. I was a bit intimidated trying to run with so many other people around me, but I kept moving. I remembered my goal of finishing in less than two hours and thought how long a time that seemed. Going through the parks at night was fascinating and I wished my children were here. It seemed wrong to be in Disney without them, yet I soldiered on. I ran through Epcot where the park was lit with huge torches and many lights, then out on the main park road to the Magic Kingdom. After going down Main Street USA the sun began to rise as I ran through Cinderella’s Castle. Now my legs were beginning to ache and I was soaked despite the cool temperatures. The thought of stopping to rest crossed my mind and I decided my boys never give up, so I kept going. As I left the Magic Kingdom the route turned back towards Epcot by some back service roads. I ran past marching bands, cheer leaders and parking areas with cheering fans. I passed miles nine, ten, eleven and twelve. On this long stretch of road near a Disney community I saw a sign pointing to the left for the half marathon runners and straight for those running the full marathon. One thought was in my head. How could anyone run anymore? I was grateful to see the end and shocked at the time when I looked at my watch. I was well under two hours and would finish fifteen minutes faster than planned. Another few hundred yards and I crossed the finish line to be wrapped in a Mylar blanket and have a medal placed around my neck. Tears welled in my eyes and a lump formed in my throat as I thought of Matthew and Patrick.
It was over and soon I could go home. But I had to rest. I got some water, fruit and Gatorade and walked very slowly to the busses back to the hotel. I sat down for a few minutes and had all I could do to stand up. The busses were worse and I could barely climb up the steps and getting off was even harder. For the rest of the day I rested by the pool and when I walked I must have resembled Frankenstein or a Zombie shuffling as did so many others I saw. I don’t recall much else aside from going home and wondering if I could do this again.
The next year my good friend and fellow PPMD runner Kevin Smith told me I had to run the full as I had done so “well”. It was as intimidating preparing to run 26.2 miles as it was for that first half marathon, but I’ve learned that I like running and racing and it has become a challenge. Since then I have run in New York City, Boston and the Disney World Marathon. I raced the Flying Pig Half Marathon in Cincinnati and the Disneyland Half Marathon for PPMD. Each race I think of my sons and I take time in all the miles to remember the boys and families in whose honor I run. And when I finish my eyes still fill with tears and that lump returns to my throat. I’ve been told exerting yourself that much makes you more emotional, but it is more than that. My sons cannot run, so I run for them. What better way to honor those who are fighting the loss of physical ability than to push myself to the limit physically. I have a special respect for all those who don’t have time to train or don’t like to run and still get out and run a half or full marathon. Whether they finish in four, five hours or six hours is not important, but the fact they are there for someone they love is what I admire. I now know that running a marathon is very similar to caring for a child who has DMD. When things get difficult I have no choice except to keep moving. There are times I’m tired and my sons need me, so I forget the fatigue and help them just like I push past the aches and fatigue as I look for the finish line. For each activity I have to learn as much as possible to do my best and I can’t give up because it gets tough. Someday a cure will be found for DMD and I have to believe by running and raising money my teammates and I will have helped make that dream a reality.