It seemed like long ago, I started to develop pain in my left hip, a pain that grew and bothered me to the point that my race times started to go in the wrong direction. Suddenly I couldn’t touch my toes, and then one day I wasn’t able to put on my own socks and shoes! Imagine for a moment being a once healthy tri-athlete swimming, cycling and running his/her way through race after race. Training with friends continuously, getting more involved with the sport giving back to the tri community and then all of a sudden it all comes to a grinding halt. No pun intended, but grinding is exactly the correct word, to give you an idea of what it felt like, grab a pepper grinder and give it a few turns (I’ll wait), that feeling that’s what bone on bone grinding away internally constantly with every step feels like. This is what my daily routine had become, a true grind. The X-rays revealed what I feared. My left hip had deteriorated to the point that I had zero, nada, zip, zilch, cartilage remaining to cushion my stride as I ran, cycled or imagine even as I walked. All I heard the doctor say was that I would no longer be able to run, these words triggered a chain reaction that caused my mind to shut down. The news struck me like a MAC truck! I tuned out everything after that and only heard small bits and pieces of what that initial doctor had to say. I rode the bus home from the lab / orthopedist’s office upset, nearly in tears, frustrated, depressed and confused. The words Total Hip Replacement were not new to me, but the idea of having to undergo such a procedure as a 29 year old was just unfathomable.

Luckily I came home to a very supportive girl friend, Staci Wasco who spent the next few days (okay Bailey my dog did too) trying to get me out of this funk. Trying to show me there were other things beside triathlon and that I just needed to shift my goals. While I learned she was right, she also supported my decision to pursue multiple opinions, traveling near and far till I found Dr Mayman at HSS. Instantly I had found a great fit, a doctor who understood how important triathlon and being active was to me. He educated me on a BHR (Birmingham Hip Resurfacing) which is a hip resurfacing, involving metal and creating a new socket and femoral head, essentially a new hip. I scheduled the procedure for 11/15/2012. I had the greatest support crew around; family, friends and Staci all rallied around me to support me post op. I couldn’t get two minutes to myself while I was in the Hospital recovering from the surgery. Less than 24 hours after the surgery I was up, walking around the recovery ward at first with a walker, and then with two crutches. My progress was amazingly fast and encouraging. I was suddenly pain free (well no more pepper grinder action in the hip joint). I eventually made my way home and tortured Staci constantly asking her for med’s and help with this and that, but eventually I was weaned off the pain meds and progressed to one crutch and then none and slowly I found myself starting to walk better. PT started immediately; the first 10 minutes on a back on the saddle of a bike (stationary of course) was legendary! I wanted more, my leg felt weak and had atrophied a ton but still to get that motion back and to begin again was the most rewarding moment. However, I was soon struck with some setbacks, my progress began to plateau and my goal of completing the 70.3 in Mont-Tremblant on June 23rd 2013 was too much, too soon. I still to this day (April 21st 2013) have not run a single step. Post op my surgeon told me NO RUNNING FOR SIX MONTHS. He even made me say it with him three times (ah I knew I had found the right guy).

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. Why was I being so selfish before and not being selfless I will never know but I happily found my way to NF Endurance and an opportunity to return to my home town course, the New York City Triathlon. The most amazing part about CTF and NF Endurance 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 above about me and my hip, it truly puts life in perspective.

 Gregg’s Story about the 2012 NYC Marathon and his Journey:

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 in to the race when it was cancelled. At first I was disappointed. I was thinking of all the training I had done to prepare for the race. I was also thinking of all the people who had already given so generously to our cause. As I was feeling a little bit depressed one of the other Dads who had flown in from Minnesota and was running for his son 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. He joined me for 5 miles even though he hasn’t run in years. I left him on the side of the road because carrying him wasn’t an option. 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! So as my new friend from Minnesota said…We WILL make the best of it!

One word of advice I would have for you is that if you plan on doing your own marathon don’t do it on a course that is ALL uphill coming back! Just when I was starting to regret my decision, I saw my beautiful wife waiting for me at mile 20 with Brooke and Jack.

Then at mile 22, when I was running past work, she was there again with them and about 20 friends from work who came out to cheer me on. It provided a big boost and really helped me through the final 4 miles. I ended at my house where my family was waiting for me.

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

 

 

So I completed the 26.2 miles. Most importantly, we showed Jack that there are a great many people who have his back! As the father of a child with NF, I just wanted to thank you for choosing to run for this cause. For me, running for NF Endurance was my way of fighting back against a scary unpredictable opponent. I hope that you find a home with NF Endurance and run many races in the future. This is such a worthwhile cause. Millions of people around the world suffer in the anonymity of this disorder. It is because of people like you, that this cause is finally starting to get the attention it deserves. You all inspire me!

 

While Gregg was kind enough to share all this and bring a tear or more to my eye, I saw these 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 mild mannered auditor for New York Life but rather as SUPERMAN, Jack’s SUPERMAN! Come out and cheer me on as I race for Jack and The Children’s Tumor Foundation on July 14 the finish line is at the Band-shell in central park from 11am till 2pm.

 Thank you for taking the time to check out my blog reading this story will hopefully encourage you to donate to NF Endurance and the Children’s Tumor Foundation. Help make a difference and join me in raising money for this amazing child and the Children’s Tumor Foundation here: SUPERJACK!