Lucky 13

LUCKY 13- Today is the 13^th anniversary of one of the best days of my life.  I was so excited to become a Dad and all the things that I thought came with it.  Jack was perfect.  He had 10 toes, 10 fingers, and a big smile that showed you that he was Grampy Burke’s grandson.   He brought me more joy then I thought I could ever experience and from almost the very start he had that great personality.  Months went by and soon he was walking and talking and singing “Cocaine Blues” by Johnny Cash and learning lots of things from his Mom and me and his favorite nanny, Casey Fox.  He was just so great and so was life. My son.  What no one prepares you for is the unexpected.  Nobody can prepare you.  There is no manual.

And so it goes that Jack was diagnosed at age two with Neurofibromatosis Type 1.  The physician who first told us thought we already knew but I won’t go into those details.  As most of you know, the years following this diagnosis have been challenging.  Countless MRI’s, needle sticks, 52 weeks of chemo, brain surgery, eye surgery and endless other doctors appointments.

On the other hand, there has been tremendous joy and accomplishment.  Jack has inspired thousands upon thousands of people to join him in the fight to CureNFwithJack.  He has raised awareness about the disorder and over $1 Million toward research benefitting others with the disorder.  People who wanted to be helpful within their communities have mobilized around him and host golf tournaments, wine tastings, yard sales and many other events.  People have given their time, talent and treasure to help us find a cure.  Neighbors and friends have been our board members and advisors and caregivers.  The stories I could share about out friends and neighbors.  WOW. We have partnered with both the Childrens Tumor Foundation and Cupids Undie Run to take that event to an entirely different level.  Well-known people and personalities like Ryan Eversley, Michelle McGann, Jack Nicklaus, Andy Lally, and Rodney Harrison have helped us in our efforts. Others like Kevin Griffin and Clint Eastwood have supported Jack along the way.

I can’t change the fact that Jack has NF.  I would trade with him in a minute but I can’t.  We don’t know what the future holds for him or our family.  But I do know this.  My boy, my hero, is 13 years old today and that is absolutely glorious.  He has taught me more about adversity than I can ever share.  He has taught me perseverance, dignity, pride, compassion, empathy and more. He showed me how to be a difference maker.  I love him and only worry that now that he is a teenager he will drive me absolutely insane.  I am glad he has the chance to do just that.  To celebrate Jack today be a difference maker.  Volunteer for a cause.  Our friends at Sunshine on a Ranney Day or the Front Row Foundation or Cure Childhood Cancer are always looking for support and they do great work! Donate to a Cupids Runner. Donate to CureNFwithJack or the Childrens Tumor Foundation.

The birth of Jack and of course, Luke and Grace are 3 of the greatest days of my life.  The gifts that he and they give me are immeasurable and that my friends is LUCKY13.

I’ve stolen these lyrics before from our friend Kevin Griffin, and on this LUCKY 13 anniversary, here they are again:

And what would you intend to find? Solitude? Your peace of mind? Holding out for something less than touching the hand of God?

Tomorrow there is HOPE and you are among the reasons why.  Don’t ever forget that fact.  EVER.

Jake, Beth, Jack, Luke and Grace