This site is a compilation of my thoughts, fears, experiences and efforts related to my son's diagnosis of neurofibromatosis and how I choose to acknowledge it. I also write occasionally about my oldest son's struggles with depression and addiction and his death as a result. I am a mother and I write to cope with the very difficult realities of life.
The Rolex 24 at Daytona signifies the culmination of a year of fundraising for those of us who take part in the Children's Tumor Foundation's Racing4Research program. Jill Beck, director of the program, orchestrates the ingenious plan to enable all of the participating families of "NF Heroes" to cheer on the foundation's racing teams over race weekend at the track. It started out as a few families and one logo on one car. Over the seven years since its inception, the program has grown to include 150+ families and heroes, seven racing teams and 25 drivers in two different IMSA racing series. It is an incredible experience and is something that we personally, eagerly look forward to each year. This year alone, the program raised over $750,000 for research.
Video from the 2013 event.
A few weeks before the Rolex 24 this year, we were visiting with our family in Florida and Jesse told a little white lie. To know Jesse at all, you would understand how profoundly out of character this was for him. Jesse has always had an undeniable desire to follow rules to the letter and often oversees that others do as well. He was drawn to super heroes as a young child, partly due to the nature by which they seek order and justice for mankind, and partly because they possess a strength and bravery that he himself has been forced to exhibit in the face of NF. He could relate to them on many levels. So, to sit at a table full of his grandparents, uncles, cousins parents and siblings and claim that going to the race in Daytona is not that important to him, I was keenly aware of the presence of an ulterior motive.
Our relocation to Virginia from Western New York this past summer was an obstacle to our fundraising efforts this year. In addition, I continued to act as the NF Walk Chair for the Rochester NF Walk even though our move took us out of state a month before the event. It was a busy year. Jesse's fib was actually aimed at preserving our feelings. He knew that we had not earned the prerequisite amount of money to fund our trip and that our family budget was already stretched with an unsold home in New York added to living expenses in Virginia. He's growing up and noticing things and he's a smart kid. He wanted us to believe that it was not so important to him so that if we couldn't swing the trip out-of-pocket this year, we wouldn't feel as though we were denying him. Part of me is proud of him for acting so grownup and attempting to waylay any guilt on our part, but I am also saddened by this. I'm not certain that I am ready to say so long to the days of his wide-eyed innocence on adult matters such as this. Like it or not, I have to face the fact that at 16, my little guy is maturing and will be tackling the world's problems on his own before I know. Preparing him to manage his own care is another blog post entirely! Despite his best attempts to convince us otherwise, we know what race weekend does for Jesse; psychologically, emotionally and physically. We are fortunate that Peter was able to take on some additional work in order to finance the trip this year. He always takes good care of us.
Once we arrive at the track each year, it is no mystery how this event effects our son. Between his Grandpas who come to support him and his NF family, he blossoms from being a semi-withdrawn, lone wolf into a full fledged member of a pack. He is reminded that he is a smaller part of something so much bigger than himself and not only does he fit in, but he stands out. Jill Beck has engineered the event so magically that it allows Jesse and the other heroes to shine brighter than the gold watches that encircle the winners' wrists. They get to be the celebrities for the whole weekend, while everyone, including these superstar race car drivers, is looking to impress them and give them the spotlight. Much like "Batkid", 5 year old Miles Scott, was given the city of San Francisco in which to play superhero, our NF Heroes are given Daytona International Speedway.
Friday night team dinner; all smiles already.
Jesse's NF buddy, Kyler.
Jesse and fellow hero/artist Jeff Hanson
Can't decide who has the dreamier smile.
Jesse adds his autograph to the No.73 for luck.
A pose with CTF driver, Mike Vess.
Kevin Estre, CTF driver autograph.
Jesse with CTF driver, Jason Hart, who is all heart.
Jr. CTF driver, Connor De Phillippi
Jesse found his name on the car.
CTF Driver Patrick Lindsay autographing Jesse's shirt
All of the kids, who come to Florida for this event, are battling their own villains. NF affects each person differently; it's the nature of the beast, and as parents, we never know what will come our way tomorrow or the day after that. Of course it is true that, nobody knows what life will hand them from one moment to the next, but with NF, the chances that the something will be staggering are increased dramatically. By participating in this Racing4Research event, we are given a weekend off from life in the world of wait-and-see, brain surgery, chemotherapy, spinal fusion, tumor dissection, hospital stays, specialist visits, follow-ups, MRIs, X-rays, therapies, bullying and every other villain that terrorizes people with Neurofibromatosis. I swear, even the kids who normally feel pain, have a respite. You can tell by looking at their faces. They are beaming; feeling pride in their drivers, elation for the cars that wear the same logo they wear on their chests, and exhilaration from the incredible energy that pulses within. It is a kind of energy that can only come from the sound of high powered machines whizzing by you at 180 miles per hour.
When the race is finished and the mighty GTD Porsche teams pull their weary drivers, crews and cars from the track, the similarity between them and our kids becomes quite evident. They both endure hardship with dignity and strong will. Jesse is rather focused at this point in the day. He singles out each driver and personally thanks them for being a part of his race to overcome the struggles of living with NF.
Our truly devoted, longtime driver and friend, Ryan Eversley.
Jesse's name made it through; beaten, but not broken.
Once we arrive at the track each year, it is no mystery how this event effects our son. Between his Grandpas who come to support him and his NF family, he blossoms from being a semi-withdrawn, lone wolf into a full fledged member of a pack. He is reminded that he is a smaller part of something so much bigger than himself and not only does he fit in, but he stands out. Jill Beck has engineered the event so magically that it allows Jesse and the other heroes to shine brighter than the gold watches that encircle the winners' wrists. They get to be the celebrities for the whole weekend, while everyone, including these superstar race car drivers, is looking to impress them and give them the spotlight. Much like "Batkid", 5 year old Miles Scott, was given the city of San Francisco in which to play superhero, our NF Heroes are given Daytona International Speedway. 
All of the kids, who come to Florida for this event, are battling their own villains. NF affects each person differently; it's the nature of the beast, and as parents, we never know what will come our way tomorrow or the day after that. Of course it is true that, nobody knows what life will hand them from one moment to the next, but with NF, the chances that the something will be staggering are increased dramatically. By participating in this Racing4Research event, we are given a weekend off from life in the world of wait-and-see, brain surgery, chemotherapy, spinal fusion, tumor dissection, hospital stays, specialist visits, follow-ups, MRIs, X-rays, therapies, bullying and every other villain that terrorizes people with Neurofibromatosis. I swear, even the kids who normally feel pain, have a respite. You can tell by looking at their faces. They are beaming; feeling pride in their drivers, elation for the cars that wear the same logo they wear on their chests, and exhilaration from the incredible energy that pulses within. It is a kind of energy that can only come from the sound of high powered machines whizzing by you at 180 miles per hour.
