With my race schedule empty and my heart feeling the same I decided I needed some new mo-jo some motivation to race for a different cause. I happily found my way to NF Endurance and an opportunity to return to my home town course, the NYC Triathlon. The most amazing part about CTF is that the organization links you directly with a family impacted by neurofibromatosis. The story that Gregg shared with me eclipses whatever trivial information you read about me and my hip, it truly puts life in perspective.

Gregg’s Story about his son Jack and the 2012 NYC Marathon: Needless to say, Superstorm Sandy put a bit of a damper on the NYC Marathon. For the record, although I was conflicted and did ultimately agree with the decision to cancel the race, I would have gone ahead with the race if it was held. In fact, I was at the NYC Marathon Expo checking into the race when it was cancelled. At first I was disappointed. One of the other Dads said “You know, this is just a microcosm of living with a child with NF, life can throw you a curveball at any minute. You just have to be prepared and make the best of it”. That got me thinking…I knew already that I would never let anything that might medically happen with Jack to get in the way of doing everything I could for him. As nice as it would be to run amongst thousands of people and have millions of people cheering me on, it was not to be. But I realized that those things are not what was important in this.

So, I decided that Sandy was not going to stop us. My commitment was to run 26.2 miles so that Monday morning I got up and started running. After 5 miles I stopped at my brother Matt’s house for water and told him that I was going to try to run the 26.2 miles that day. I ran the next 10 miles by myself and was able to reflect on this journey, a journey that was not ending but just beginning. Jack’s diagnosis has changed our lives forever but maybe, just maybe, it has changed our lives for the better. We try not to take for granted our children and the little things in life. Every minute is a blessing. We also realize that many, many families are having to deal with FAR worse and we are grateful for how fortunate we are. I also came to realize that Jack could never have existed without NF. It is as much a part of who he is as his blue eyes or his wonderful personality. A different sperm cell or a different egg would have produced a different kid. I’ll take a life with Jack and his NF over one without! We WILL make the best of it!

I’ll be honest with you; my marathon was every bit as special as if I had run it with all those cheering crowds. It was special because I was able to share it with the people who matter most in my life!

While Gregg was kind enough to share all this and bring a tear or more to my eye, I saw the photos of a child that was just super happy, he was super excited about life, filled with a super personality. Maybe you see a trend here but Jack, well I should say ‘Super Jack’ loves SUPER MAN! So that pretty much settled it for me, this previously tinman thought he could finish an Ironman needed to be made of steel himself before deciding to become Jack’s SUPERMAN as I complete the NYC Triathlon not as Daniel Schiemel mild mannered auditor for New York Life but rather as SUPERMAN, Jack’s SUPERMAN!

I sincerely hope this story becomes a call to action for many of my readers, myself included. I hope everyone finds a reason to make a difference in this world, for me it’s helping Jack Gregg and their family raise money to find a cure, thank you for your consideration and donation.

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