Sept 11, 2001
The Race

James appears to be responding well to the increase in pain medications. The turning point came yesterday afternoon, with the arrival via special courier from Toronto of the freshly edited film footage taken on the day of the race. James began to laugh again as we watched his last race, the spin crash one, and then rewound slowly so that we saw the crashed car emerg from the crowd, spin, and zoom backwards up the hill and into the starting ramp. Very funny. "Do it again Dad!" In that things like soap box races wonderfully motivate a sick child to live, I felt that last Saturday's race was a landmark in James' life, and I wanted to share the moment with you. However the demands of James' care just now don't allow me time to write an email that would do justice to the story. I asked Big James if he could help, and in his words here is the story. I warn you that it may bring tears. It did for me.
Syd

Syd,

I have been oblivious to most of James' 7 years of life. The tragic news of his fight with neuroblastoma did not catch my eye. The car wash rallies registered only vaguely on my radar screen. If Carole mentioned James, his story was one of many.

That changed when Carole described this young boy's dream to build and race a soap box racer. This was a dream I could understand and identify with. This was a dream I could help become, if not a reality, at least a promise of reality. This boy spoke to me before I even met him.

To meet James is to love him. His remarkable intelligence is apparent immediately, even when viewed through the haze of medication or between bouts of vomiting. At James' age I was building Mecano elevators and following my Grandfather around fixing refrigerators, so perhaps I responded particularly strongly to this kindred spirit. What may be even more remarkable than his intelligence however, is the grace with which he bears his burden. He simply does not complain about his lot. He accepts adversity but not defeat. We, whose lives are so much simpler, are humbled by the object lesson in living that James provides.

Awareness comes slowly though, and I didn't appreciate what I had been handed when Syd gave me his binder of emails on my first visit. As I read through it over the next few days, I joined the many follower's of the Birrell family saga. I doubt that Syd could have could have imagined where these emails would lead when he started them, nor the profound effect they have on their readers. Confronted with Syd's position I would find it so easy to retire into my own private misery.

As we began to design the soap box racer that became James' TGV Orange Rocket, we realized that getting James out of the house to work on the racer would give James a reason to get out of bed. Our first attempts to schedule visits quickly revealed that James' life had a schedule of its own. We came to see that there was actually nothing in our day more important than a half hour visit from James and we could easily accommodate him any time he was up to a visit.

From day one, James had settled on the idea of a racer patterned after the famous TGV train. The initial concept sketches were transferred to cardboard at full scale and signed off by James to finalise the design. Each day James came to visit, we tackled a small part of the project, and each day James was absent, the project stood idle. Whether confined to his wheel chair, or struggling with a cane, or bounding with seemingly limitless energy and perfect health James always lent his hand to some part of the day's efforts. My daughter's soapbox racer stood always at the ready for a bit of driving practice. Sometimes when James was not feeling very well, the example of Ben taking a test drive was enough to rouse James' energy. Sibling rivalry appears at times to be a positive force.

Eventually, the TGV woodwork was finished and it was time to install the axles, brakes and steering. Steering cables needed tensioning, wheels needed alignment, brakes needed adjusting. Painting could wait for a few test drives. Often Ben and Rebecca would join the visit, and occasionally friends and relatives. On driving days, anyone small enough to fit could try a push down the gentle slope at the hangar.

Applying the paint and decals brought out the true elegance of James' design. This racer was sleek, beautiful and functional. All that remained was a test on a real hill. Real hills require real drivers, and only James was qualified to drive the TGV on a real hill. The practice hill on Whittington Drive had been freshly paved, has little traffic, and has a good long slope. Whereas the real race would provide 20 seconds at high speed, Whittington drive provide a smooth and gradual acceleration over a 50 second run.

With Syd in close pursuit in the Subaru, and me at the bottom of the hill warding off any traffic from below, our hill provided relative safety from traffic, while also providing very unforgiving ditches on both sides. A child's first run down such a hill is a very special thing for a grownup to observe - as thrilling as it is terrifying. We had build a car capable of winning.

We had not built a car that was easy to drive. At high speed the car became directionally unstable and required continuous attention to maintain course. As ballast was added, this tendency was accentuated. Worse, the thin tires, while providing low rolling resistance, offered virtually no cornering capability. The driver must be smooth, and his concentration must be total. Enter James, compromised by pain and/or medication.

While we had started this project with only a small hope of actually reaching race day, we found race day actually within our grasp. And we found ourselves confronted with a cost benefit analysis that said at risk - James' life, benefit - quality of life. Every run down the practice hill was tense. As we increased the ballast toward race weight the tension rose. Some days James drove arrow straight. Some days we could not discern if James was chasing shadows or simply minimising his pain and driving just well enough to stay on the road.

James showed a marked preference for the right lane, while we would have preferred him to take the centre of the road to provide the largest margin of safety relative to those ditches. On one occasion, James proved is approach wiser when to our horror a truck pulled onto the road and the two vehicles passed each other in opposite directions and opposite lanes. Two days before race day we had our last two practice runs. On the last run we were on the receiving end of a verbal tirade by an irate trucker who did not appreciate our use of a public road. We had, however, satisfied ourselves that James could drive the car safely at race weight, although full race speed would have to wait for race day.

The afternoon before race day, we changed all the wheel bearings and packed up the car. The race would be run on brand new bearings, carefully cleaned and lubricated with a secret formula that had served by son and daughter well in previous years. Having done our homework, we parted knowing we had done all we could to prepare. Immediately though, I began thinking of things I hadn't previously considered. Wouldn't the car be easier to drive if we had a better directional reference for James - OK, that I can build and install on race day. Wouldn't the car be more directionally stable and easier to drive and SAFER if the wheels had two bearings - that change would be tough, and Syd reminded me that both my kids had driven on single bearing wheels (yes but my son's care was as notoriously difficult to drive as it was fast, and my daughter crashed twice). Mercifully I didn't dream about soap box racing that night.

There had been a threat of rain on race day, but the weather was perfect. Syd and I had arranged to meet for weigh in at 9:30. It didn't surprise me that he was early and beat me there. Weigh in was uneventful as we had carefully ballasted the car exactly 10 pounds below the maximum to allow James to have a big breakfast (and because we were simply unwilling to push our luck any higher). The aiming reference was installed by James, and he seemed delighted by the addition.

Qualifying against car 104 was extremely fortunate, as 104 was the second fastest car in the class. James with car 103 won both heats, the second by only .005 seconds. This was great racing, and James was clearly the driver to beat. As eliminations began, a peculiar rule placed James in lane 1 for every race. Lane 1 may have been a bit faster, but it had an obstacle 50 yards from the finish that made it much harder to drive. As eliminations continued, James' continued success had him jumping from wagon to racer without a rest. On his 8th run, the pace of action took its toll. James steered beautifully, but a slight overcorrection toward the end forced him to take the short side around the obstacle, and then to steer hard to avoid the timing light. The narrow tires were not up to the cornering and the car spun out, passed through the finish line backwards, and struck a curb. Disaster was narrowly averted, as both the finish line worker and the other car were only barely missed. The car was damaged, and James shaken but not stirred. He finished the day elated in 4th place.

The race, you might say, was not all it could have been. I would argue, it was more. James had put on a terrific show, but had not stolen the show. He had done so as just another 7 year old boy, despite the intense attention focused on him. He showed an absolute obliviousness to any real or perceived pressure and simply had fun. He presented himself honestly to the world as an absolutely charming and delightful young boy. His fellow racers and their families responded in kind, and the day had the wonderful feeling of kids simply having fun.

Thank you James for sharing your dream with us. Thank you Syd, Pam, Rebecca and Ben for sharing James with us. Your friend,
Big James

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