Never Tell Me The Odds: Post 23 - "Long May You Run" (Aurora's song)

Aurora

On Saturday, June 5, we will be attending Emily's year-end gymnastic show. As excited as I am to see my little girl perform, I am somewhat disappointed, since we will be missing the Great Strides Walk to Cure Cystic Fibrosis (CF) going on that same afternoon in Poughkeepsie New York. That afternoon, my friend Jeff, his wife Vanessa, and their daughter Aurora, with a whole host of family and friends, will be walking to raise awareness for a cure for CF. Aurora, my pseudo-niece, who turned two years old, last December, was diagnosed with cystic fibrosis, shortly after birth. Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. It is one of the most common chronic lung diseases in children and young adults. There is no way to accurately predict how long a person with cystic fibrosis will live. More than 45 percent of all people with CF in the US are 18 years or older, and the current life expectancy is in the mid-30s. Currently, there is no cure for cystic fibrosis.

Next Saturday, May 7, I will be walking in the Great Strides Walk to Cure Cystic Fibrosis in Mercer County Park, since I can't be with Jeff, Vanessa and Aurora in June. Although I may be the last person you'd expect participating in a fundraising walk for something other than ALS, for a number of reasons, it's something that I could not even contemplate not doing. Recognizing that the economy is tight all over and that charitable donations are taking a hit as well, I realize that I could possibly be jeopardizing some financial support for my own walk or other fundraising events, by asking people to sponsor me in someone else's walk, but I urge you to please give to help find a cure for cystic fibrosis. Jeff and I have known each other for over 30 years, and have been very close friends for approximately the past 20 years, this despite the fact that I once broke his hand playing hockey. He is the Kramer to my Jerry, the Oscar to my Felix, the Jay to my Silent Bob. Jeff and Vanessa have greatly supported me since the day they found out about my diagnosis. At times, he has been like a brother to me, which by definition, makes Aurora my pseudo-niece.

Sydney and Emily with their "cousin" Aurora. Spring, 2010

Over last few years, I have had to begin to come to terms with my own mortality. I have tried to approach this objectively and optimistically with as much honesty and dignity as I can muster. So far, I think I've done okay. I know, there's always room for improvement. One of things that has concerned me, was what we will be going to tell Sydney and when would we be telling her. Sydney has already recognized that I am not typical. She appears to instinctively know what questions to ask and when to ask them. Additionally, she realizes that at times I need help with things and she has always been eager and willing to do just that. Emily, as well, seems to know that I am limited in some ways. She too, like her sister, is eager to help but not always quite as effective. I worry that as a five-year-old, this may be too much for Sydney to handle. Besides seeing me in a wheelchair, seeing me fall a half dozen times and seeing me lying on the ground at least a half-dozen other times, she has to try and comprehend why daddy can't get out of a chair without mommies help or why daddy always has to drink with a straw, in addition to another 100 things that don't make sense about her daddy, on a daily basis. I recognize that some day, I may have to tell Sydney and Emily that I am dying. As so many of you have told me that you could not imagine what I and Tracey are going through, I cannot even imagine how difficult it must be for Jeff and Vanessa. They are faced with the dilemma of trying to figure out how and when to tell their daughter, what the future may hold for her.

Last summer, when Tracey and I first began talking about participating in the ALS walk in Philadelphia, we did not have high expectations. After all, this was our first time participating. We had hoped that we would have about 25 people (and that included family) walk with us, and that we would be able to raise around $1500. If we accomplished that, we would have probably felt very good about ourselves. Instead, we had about 105 people walk with me that afternoon and we raised close to 10 times the amount that we had hoped to raise. Although the money was important, it was not going directly into my pocket, and therefore did not have a direct impact on me. What did impact me greatly, however, where family and friends, half of which who probably drove an hour or more, that came to Philadelphia that Saturday morning to walk with me. Our team, the ALS Wing Fighters, ranged in age from 18 months to 76 years old, included walkers from four different states, and included friends that I have known for over 35 years, as well as people that I had just met that morning. The donations to our team, in my honor, ranged from $13 in change, collected by one of my friends two sons as they "trick or treated" the previous weekend, to a $1000 donation from my brother-in-law Scott's company (even though Scott is the company's comptroller, I'm sure the donation was on the up and up) K B. Alloys. Scott, and my sister-in-law Betsy, together with their sons (Colin and Evan) raised more than $2000. Another half dozen families raised close to $1000 each. Before the money even started to pour in, I had people signing up to walk with me left and right. Each night, Tracey would check our team roster and tell me how another one or two or three people signed up to walk. People who I've known for years, people who I've met recently, and people I had yet to meet. It really didn't hit me until it came time for us to order shirts for the walkers. We had attempted to solicit funds from a business who would be interested in sponsoring us to help pay for the T-shirts. My friend, Kristen, was able to enlist the support from her cousin, the owner of Tiki Hut Tans, to cover the cost of T-shirts. I told Kristen, that we probably need about 50 shirts. (At the time, we only have about 40 people signed up to walk, but I was pretty confident I was worth at least 10 more people.) Tracey and I ended up paying for another 50 shirts, and when all was said and done, there were over 100+ family and friends walking with me on this day. We were officially over 110 people, if you count the ALS Wing Fighters-West Coast, put together by my friend Becky, who walked in Washington State, with her family and friends.

Mommy and daughter

After recently just looking at some pictures from the walk, I still cannot believe the amount of support we received that day. And I can't even begin to to put into words the emotional uplifting I received from that support. I remember telling people how well I felt that day and that even though I did not walk the full course, I felt like I could. Still, when I think about it now, over six months later, I still become energized and reinvigorated for the fight. This coming November, I would love to duplicate that feeling. However, this time, it is Aurora's turn, and although I am sure she is too young to fully comprehend and appreciate what is going on around her, on behalf of her, I cannot discount the impact, and the emotional support and love that Jeff and Vanessa will receive from this and the empowerment it would give them to continue the fight on Aurora's behalf. Jeff and Vanessa keep us frequently updated on Aurora's condition as well as the state of affairs regarding CF research. Many researchers believe that a treatment or cure will happen in the next 10 years. I know that the few steps that I take next Saturday will not lead directly to a cure but it will mean something to me, for a number of reasons. I know it will mean something for Jeff and Vanessa, as well.