Affirmation Day

Today was one of those NF days.  All that really means is that the day is likely going to suck.  Specifically, Jack was experiencing pretty bad leg pain for the last 24 hours.  Now, it more than likely is nothing but last night in anticipation of a doctor’s visit many things go through the mind and now HIS mind too.  Dad, he asked, it’s not a tumor doing that, right?  He’s 10 now. He gets it.  I said, no OF COURSE NOT (knowing I was thinking the same thing).  Today was also a visit to the eye doctor to see if his vision is stable, the tumor is stable, etc.  All in all not a fun day to start.  We went to the doctor early and fortunately it seems that it is a ligament strain…no growth. However, NF is still a cause.  One of the many things this disorder does to his body is make it weaker and susceptible to these type of injuries.  After that visit he was hungry so we went to get some breakfast…his choice.  IHOP!  We had breakfast.  We had a few laughs and it was time to go and get ready for our next appointment.

Now, some of you may recall an incident I have shared from about 5 years ago when an older gentleman in breakfast line at a McDonald’s asked Jack “What is wrong with your eye?”  Jack was five.  Jack looked at me and I answered for him and lied.  I told the man he just “bumped it”.  A few minutes later, Jack asked me why I lied and since that day I have NEVER protected the questioner over the questioned, and I will never do it again.  Fast forward to today.

Checking out at IHOP and we were waiting our turn at the exit.  The man getting ready to check us out was smiling and said goodbye to a woman as she was leaving.  She said goodbye and in doing so she turned and saw Jack.  This all happened in seconds and maybe because of past experiences, I “knew” what was coming and was getting “ready”. Unlike 5 years ago she made no mention of his eye.  It went like this:  

Woman:  Are you Jack?

Jack: Yes I am. Hi.  

Woman: ” I know you.  I follow you on Twitter.  You are CureNFwithJack!”

Me:  Jaw dropped.

Jack: “You follow me on Twitter? Cool, thank you.”

Woman:  “You are welcome and thank you”

Me:  “Hi, I am Jack’s Dad.  You follow him on Twitter? Awesome, Thanks so much”.  Noting that she is not a teacher or a neighbor and becoming more amazed all at once.

Woman to Jack:  “I hope you had a good breakfast and have a great day!’

Jack:  Thanks

We paid and we left.  I was still taking it all in and trying to control my emotions and astonishment at just what had happened.  Jack cuts right to it.  “Dad”, he said, “I am kind of famous like Ryan Eversley.  People know me and what we are doing with CureNFwithJack.  We have to call Ryan and joke with him.” “Of course we do”, I replied and we did.  That was a great conversation!

We went to the eye doctor and got a fantastic report thank goodness.  But I have been replaying this simple 30 second interaction today over and over. Our friend who follows us on Twitter was just saying hi. But what I heard and I hope you take from this is that she said a LOT more.  She said:

I know your story.  I believe in your journey Jack.  I don’t see anything wrong with your eye.  I see a boy in a battle.  It will be OK.  I am with you. Keep going.

To all of you who support Jack on Twitter or Facebook or in person, thank you. If you ran in your underwear and shared that story, thank you.  If you played in a golf tournament or donated to our yard sale, thank you.  If you are Brittany Downing and running the Boston Marathon for Jack, thank you.  What happened today was AFFIRMATION.  Not just for Jack and the Burke’s but for ALL of us. We are doing the right thing.  We are raising awareness.  We are raising dollars. We are helping to find a cure.  Today was NOT one of those NF Days in large part, because of you.  Thanks

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

Jake, Beth, Jack, Luke and Grace