A Childhood Gone Too Soon

In the 10 plus years that we’ve been dealing with NF, we have faced lots of uphill battles.  The pain associated with many of those episodes often assuaged by the encouraging and thoughtful words and deeds by so many of you.  I am the first to realize that while we have had some hardship, there are other families of sick children with NF and other disorders, too many to name, that are in a much more difficult predicament.  I know that.  But this isn’t about that.  This is about a childhood.  A childhood I listened to just rush away far too early into adulthood today.  I listened on my phone in some hotel at some conference near some booth where I had a break for a minute. I listened to my boy who was several hundred miles away talk about what he heard at yet another doctor’s appointment. It was to discuss his NF and how it is impacting him. I listened and could do NOTHING.  NOTHING. 

I heard him say through his tears that “I am nervous, Daddy and I am sad.”  Having listened in on the call with the doctor a few minutes prior, I knew WHY he felt this way, but I asked anyway.  His sadness, his confusion, his fatigue with this dreaded disorder soaked the phone and made the air in the hotel lobby heavy.  My boy’s voice made my heart heavy.  I rushed to a secluded corner so as not to make a spectacle of myself, muting my phone so he couldn’t hear me.  I tried to offer some encouragement while swallowing my angst.

Being the father of a child with NF has been a terribly brutal lesson in trying to figure out what to do to make it better.  That is, after all, a parents job.  MAKE. IT. BETTER. During our brief conversation,I resisted the temptation of telling him things I cannot possibly know including “It’s going to be OK” or “Everything will be fine” or simply implore him to “Don’t get upset, buddy”. There is a myriad of other stupid things parents like me tell their kids to try to make it better. I know it’s bullshit and most importantly, Jack does too.

Nope, I listened.  I said I was sorry and that word is just about the most inadequate word I could say to my boy who is no longer my “boy” after today.  He is a man.  In many ways, I think he has been a man for a while.  He sits in a room with adults talking about HIM.  He does not sit idly by and just listen. He LISTENS and asks questions and shares his thoughts. That level of engagement, by any measure, is a man.  Listening to scary, unpronounceable things like Plexiform Neurofibroma, Syrinx, Glioma, Ventricles and then learning in real time the presence of new challenges and not losing it right there makes him a man.  He is just thirteen years old. 

NF has taken a few things from us over the years but today I feel like it took Jack’s remaining years of childhood.  I hate it for that.  Sure, he still will do “kid things” and yes, he is only in middle school, but this disorder has forced him to confront issues that make most adults quake in their goddamn boots.  And I hate NF for that. 

So, I told the man that used to be my boy the only thing I could.  I told him that I have his back no matter what and that it is OK to be nervous and that he is very brave and that I loved him. I told him that I do not know how he must feel but that Beth and I are always ready to hear what he thinks. Jack’s childhood is gone. 

The solace that I find in that, if there is any at all, is that he moves to adulthood with bravery I don’t understand, courage I could never muster, wisdom I hope to only achieve and the love of more people than he can count.  We will keep fighting with him, for him and for others through our awereness and fundraising initiatives through CureNFwithJack.  Our first ever deep sea fishing tournament in Palm Beach is May 17th and our 7th annual CureNFwithJack golf tournament is June 5th.  We hope many of you can play, volunteer or donate. We will beat this.   Thanks for reading and please stay with Jack.  He would like that.

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

Jake, Beth, Jack, Luke and Grace