Treasures

I have received great comfort from a beautiful prayer shawl I received last year when Riley got sick. When we departed the house I grabbed it to take with me on our trip. I love swathing myself in its warmth and softness when I am curled up in the airplane seats. I am still uncomfortable with flying. The fact that forcing air under the wings keeps the plane afloat does not give me great comfort. This soft fuzzy big shawl does give me comfort.



Another special treasure I brought from home was a plaid flannel pillow case a girlfriend had made for Riley while he was in the hospital. It added some color to our sterile white room. I love the feel of flannel. The pillow makes our hotel room feel more like home. Just bringing the pillow case doesn't take up much room in the luggage. The shawl and pillow case are loving reminders of everyone back home rooting for us.





Our coordinator, Amy, definitely has found her calling. She is one of those people who remembers names and knows everyone. As we drive around in the golf cart she whispers names of people as we pass them. Drivers, Nascar officials, famous names and faces that we should recognize. We are in the sacred grounds of Nascar, the inner circle of the track.



I am so out of my element. The noise and chaose, They have the little painted yellow lines. I stay well within them walking, afraid I will get run over by the golf carts jetting by on important pre race business. Or the big pit boxes that could crush you with their size and weight as they are rolled out to be put in place.



On our tour of the garages. Riley is invited into Dale Jr.'s "hauler". This is a big semi that carries two cars hydro lifted into storage above the rig. The interior is a narrow hallway lined with closets. The closets contain every piece of equipment that might be needed to repair the car during the race, including a spare engine. The crew is there having lunch at a small counter built in at the beginning of the hall. Everything glistens clean.



Dale's spare helmets sit at the other end of the long hall at another smaller counter built in to the cabinets . He has skulls and crossbones on the back of his practice helmets, just for fun. Up a short flight of 6 narrow stairs is the office. An 8 x8 room with one wall lined with a counter for computers. Three people can work at that space if they squeeze. Above them are more cabinets and two flat screen TVs going with the track cameras on one screen and the other has Nascar data and weather reports. Across from this working counter is a built in couch, in black leather. Above the couch is a wall mirror to give the illusion of more light and space. There are no windows at all.



It is a tight well organized space. Not an inch of waisted area. Originally when Amy talked about going to the haulers I thought it was some nick name. I had no idea what she was talking about. She even pointed out the Nascar hauler, saying if you get invited to that hauler you are in trouble and going to get yelled at. In my ignorance I asked if that was why they are called "hollers". She cracked up with a smile. Hauler is just that, a semi hauler that hauls the cars. With that southern accent I thought it was some sort of name for the room where drivers and crew yell at each other. You need to yell to be heard around here.


They asked us if we would be willing to be filmed for a Make a wish commercial. Talk about how we were involved and what it meant to us. I told them we would do it. they only wanted the make a wish child and one parent. Riley was nervous. We were put in a small sound proof dark room with a giant camera in our face and an "interrogation light" as Riley put it. I don't think we did really well. Riley was pretty reticent and uncomfortable. I don't think I told our story with enough emotion that they were looking for, warm fuzzies to inspire more people to support the program and become involved. Tom didn't want to do it, but I felt that we should after all that they were doing for us. It was the least we could do, and it was made clear it was voluntary.

There were other families on the trip. Danial was meeting Tony Stewart. Nathan was meeting Casey Cane. Justin was Meeting Juan Montoya. We all were at the same hotel. It was a wonderful opportunity to bond and talk to the other moms, to hear their stories.

Nathan was recovering from Hodgkin's. Thick scars covered his neck. Riley in his tactless way asked right out what the scars are for. Its my fault. I have been so open about discussing Riley, that I forgot that others may not be as comfortable with public awareness. Tom was the only Dad on the trip. Nathan was there with his Aunt and Mother. He was 13. His father lived in South Carolina. His brother, age 10, was supposed to come on the trip. A week before they were to leave his brother freaked out about flying and refused to come. He would not get on the plane. Nathan called him every day to give him updates. I am sure he regretted that decision not to go. His dad had earned tickets by playing in a competition to change a tire in 8 seconds. He sat in another area at the race, but came over and joined us mid way through the evening. He was a big guy. It amazes me to see the healthy parents then see these frail sick kids. You wonder what it was that set their illness off.

Justin's family was from the Bronks. You could tell they were on a frugal budget. He came with his Grandmother and Mother and sister. He was 8 and suffered from a clotting disorder. You could see his veins through his skin. He looked frail in his swim trunks. He had a runny nose one day. What came out was tinted red. His family had an interpreter as they spoke limited English. He loved the cars and really just wanted to hang in the garages.

We shared a spare head set with Justin, putting him on a splinter and sharing a radio. It didn't take long for Justin to learn how to punch in the driver's numbers and listen to them talk. I don't know how the parents could stand the noise, those that did not have head sets to muffle the roar.

Danial was our sad moment. He was in a wheel chair the whole time. The worry was he would not be strong enough to participate. Amy had asked his mom if their meet and greet date should be moved up and her reply was "No, meeting Tony Stewart was the only thing keeping him on this earth." She was right. After Danial met Tony Stewart, Danial collapsed and had to be life flighted home to Philadelphia. His parents wanted him to die at home with his family around him.

When we met Danial. He had a Tony Stewart Baseball cap on to hide his bald head or protect it from the sun. His skin color was a faint florescent green like a glow stick at a party. He looked sick and he had no energy. He did not remember meeting Tony Stewart. Tony was going to fly up this week to Philly, after the race, if Danial was still on this earth and see him again. Amy spent the night at the hospital with his family until he was flown home. She looked exhausted and had spent the night crying with the family. She was a Steel Magnolia. This is not the first child she has had die on a wish trip. She is strong for all of us.

Riley looks so healthy compared to the rest. He and Trevor wrestle in the pool at the hotel, while I yell at them to quit it. I remind myself we are not done yet, we are only mid way through our own trials. And we plan to pay this wonderful gift forward. There are many sick children with families needing this love to boost them along.