dewey & a dad’s despair

“Dewey…Dewey…Dewey”.  Long before the chant of “Mookie”, there was “Dewey”. If you’re older than maybe 35 and from Boston then you know who Dewey is. Like Madonna, Prince and others with recognizable one-word names, Dwight Michael Evans roamed the right field in Fenway Park for my Boston Red Sox from 1972 until 1991.  He won 8 Gold Gloves and 2 Silver Slugger awards and was an All Star 3 times. Like many kids in Boston, I loved Dwight Evans.  My first game was with a bunch of cub scouts and we sat in the upper deck of right field and I remember watching him the most because he was the closest player to us. He was fun to watch and that is a great memory.

He also was dealing with tremendous adversity off the field.  You see, Dwight Evans was also an “NF Dad” and he was one back when there was not too much out there about Neurofibromatosis. Looking at old articles this morning about his children back then make me cringe when the author mistakenly refers to NF as “Elephant Mans disease”. Two of three of his children have NF and Justin, 41 years young, died on Easter Sunday.  He died because he had NF, period.  NF truly is a monster. Imagine that in spite of all your talents and money and fame and advocacy, you still could not hold off the monster.  Goodness knows that he and his wife Susan have done quite a bit of work in the NF community and I hope in the wake of this terrible outcome that they will continue to be a force for their other son Timothy and all of the people who live with NF.  I can’t understand his pain and frustration and sadness today.  As a Dad, you want to do all you can to help protect your children and I am sure Dwight did just that…but it was not enough.  NF demanded more from him and from us and we have not been able to deliver.  YET.  There is a tremendous hope on the horizon for people with NF and I hope that the Evans family will take pride in knowing that their efforts will help others in the future.  We are now seeing breakthroughs in clinical trials that are producing new treatments.  Very soon the FDA will be approving the very first drug to treat NF.  When Dwight was in right field those many years ago pondering what the hell was going on with his boys and what could be done, I am sure he was left feeling helpless many times.  Today, through his unimaginable pain, I hope he and Susan will soon take some solace in the fact that their work for their boys will help others. 

This entire “NF thing” seemingly has been interwoven into my life longer than I even realized.  Many of you know that NF Awareness Day is on May 17th and that coincidentally, Beth and I were married on May 17th.  It is why we call Jack “one in a million”.  The odds of two non-NF people getting married on that day to then go on and have a child with NF is something like 1.09 MILLION to 1.  Anyway, I digress. Even before Beth and I were married we ran into Dwight Evans.  The story goes like this:

We were dating and I think we were still doing the “long distance relationship” deal.  Flights to and from DC and Boston every other weekend.  It was the best of times.  We had money, time and no kids and we loved every minute of it. One night we decided to go to Maggiano’s over near the theater district in Boston.  We often liked to “belly up” to the bar have a few drinks and maybe an appetizer. As we walked into the relatively quiet restaurant, I sat at the bar and did the usual “anyone else from Medford in here” scan.  Immediately to my left at a table was Dwight Frickin Evans!!!!  He was with his wife and another couple.  I was blown away.  He was right there.  I turned to Beth and told her who it was and why I was so freaked out.  I told her about him and the Red Sox of my youth and the catch in Game 6 of the World Series.  We went about our business and I would occasionally glance over remembering that day at Fenway in my Cub Scout uniform.  At some point, Beth excused herself and said she would be right back.  Just about that time, I feel a presence like a guy at the bar who needed a drink. I turn and it is HIM!  I looked at him and he said “Hello”.  I said “Hello, Mr. Evans, my name is Jake Burke and I just want to quickly thank you for so many great childhood memories.”  We shook hands and he put one hand on my shoulder, looked right at me and said, “Jake, thanks for saying that!” We had a few more seconds of small talk and then he did the unthinkable. He thought that I might have been alone at the bar so he invited me over to JOIN him and Susan for dinner at their table.  I swear to God, I thought I was going to fall off my stool.  The 12-year-old Cub Scout inside of me screamed YESSSSSSSSS!! THANKS DEWEY!  Can I have 2 Fenway Franks?” The 34-year-old man, politely said “Thanks but I am waiting for my fiance and we are just hanging out.”  He looked around and not seeing her, he said, “are you making that up?”  I laughed and said, “No, she will be right back.”  “Then bring her over too, Jake”, he said. Just then Beth came over, looking amazing like she always does and I introduced Dwight and Beth.  “Hello, nice to meet you”, he said.  I told her Dwight was kind enough to invite us to the table (my back to him, my face to her, my EYES WIDE OPEN), but I said we didn’t want to intrude on his night.  He graciously shook our hands and said thank you again and headed back over to his table.  All of this happened in about 3-4 minutes some 17 years ago. Of course, at that time I did not know Dwight had children with NF and of course I would never imagine that I would too.  I have thought many times over the years why Beth and I chose that restaurant on that night and met THAT famous Boston athlete.  It was a very cool night and one I will never forget and know that he and I are forever tied together now by this terrible disorder that impacts our boys and so many others.

I hope Dwight knows he did the best he could to help his boys, my boy and others. I have an imaginary conversation time and again with myself sitting at a bar with “adult Jack” and we are sipping a beer and he asks me, “Dad, what did YOU do?”  And my fantastical response is “Everything I could.”  I hope Dwight knows that he did everything he could and to paraphrase a great American:  “I pray that our Heavenly Father may assuage the anguish of your bereavement, and leave you only the cherished memory of the loved and lost…”- Abraham Lincoln

So, with all this in mind and as I writing this today I was reminded by many of you we must keep fighting and we will.  We always will. THIS MONDAY in Washington DC, CureNFwithJack is hosting the 7th annual DC Golf Tournament.  It’s not too late yet to sign up or donate.  You can do so by clicking on this link: http://Day4Heroes.givesmart.com

Rest in Peace Justin Evans, thank you for your life and for your impact. Peace to you Dwight, Susan, Kirsten and Timothy as you navigate forward.

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

Jake, Beth, Jack, Luke and Grace