SOMETIMES THE BEST PLANS GET, WELL, INTERRUPTED…
For the past 4 years CureNFwithJack has been hosting golf tournaments. It has been our major fundraising and awareness raising activity. On Friday, we will be hosting our 4th tournament in Washington, DC thanks to Matt Benson, Carol O’Connell and their committee. This represents our THIRTEENTH CNFWJ golf event in just 4 years. It is an incredible amount of work to pull off a successful tournament and it takes an inordinate amount of time, energy and love. Jack loves these events. He enjoys meeting the people who are supporting him and his foundation. It is a real boost for him to see people sharing his journey and showing him he is loved.
Beth and I get a tremendous boost as well. We meet people we have never met before and have an opportunity to look them in the eye and say thanks. We meet the sponsors and vendors who help make these events a success. We reconnect with friends too. The tournaments allow us to escape from the lousy side of NF even though we are well aware of why we are at the event.
For almost a year now, Matt and the DC team have been planning for this tourney. We too were getting ready to return with Jack to the state of his birth. It is always nice to get back and see friends who are now family. Old hangouts, restaurants and even reconnecting with his DC based doctors are a reassuring aspect for all of us.
As much as we want to do this event this year, we can’t. In what has to be the worst of coincidences, Jack is scheduled for brain surgery on Friday morning due to complications from NF. Of course, we didn’t know this would happen. We didn’t plan it this way. NF just got in the way once again. He was really bummed about missing the tournament. Even at this young age he knows what it means for people to host his events.
I suppose we can take some solace in the fact that our mission, our vision, our very REASON we host these golf tournaments is so that a kid won’t have to miss his own tournament, endure a 4 HOUR surgery, countless MRI’s, weeks of chemotherapy or worse. In the midst of our war against NF when perhaps it may think it won this battle it hasn’t. Not even close. While Jack is in surgery there will be over 140 golfers, volunteers, and sponsors in Virginia saying #ENDNF and saying it loudly. That will sustain us all on Friday and beyond.
On Friday morning, Jack will have brain surgery. I still have a hard time saying that much less writing it. I know he is in very capable hands but it is still tough to comprehend. He doesn’t know how anxious we are right now. He never does. He shouldn’t. We are doing our best to support him as he faces this surgery. In the end, it is his fight and I hate that I can’t do anything about it. I can’t do it for him, because I would in a minute. I hate that he will be in pain. I hate that he will be scared. I hate that Beth and I have to make these choices. I hate that Lukey has to worry again. I am thankful for the doctors and nurses who will help him. I am thankful for the technology and science that will help him. I am thankful for the scores of people who will be taking a moment out of their day and pause for Jack. We get him back probably around noon on Friday and he will be better. We will help him get there. He is strong. He is courageous. He is brave. He is my hero. As we have said before: Jack has NF but NF does not have Jack!
Thank you to all of you in Virginia and all over the world who are supporting Jack and his journey and remember please stay with Jack folks.
Tomorrow there is hope and you are among the reasons why. Don’t ever forget that. EVER. #ENDNF #FNF.
Thanks,
Jake, Beth, Jack, Luke and Grace
