When John John’s dream room was being rebuilt, there was an angel who ran the electric through his room for the various details. His name is Joe Scialabbo Sr . He also has a son. His son was at the reveal of the dream bedroom. He shared a story of hope with me. When his son was a child, he was diagnosed with an inoperable brain tumor wrapped around an artery. They couldn’t treat it and didn’t know what it was. He is now 22 and alive and well. Tumor and all. Every year Joe puts on an event called Bomber Jam. It is a live music event with all the food and trimmings you can think of. Plus plenty of things for the kids. I asked Joe if I could purchase a ticket and he never got back to me. A week later I received a ticket in the mail for my family to attend the event, that stinker.
Now Bomberjam benefits the National Brain Tumor Association. It is an event that was close to my heart. It was a blast! Hay rides, bouncy houses, music, food, raffles, and the song my children requested.
I am shameless about this one. My kids asked if they wanted them to sing Rachel Platten’s “Fight Song”. Of course they said yes. I wrote on a piece of paper ” My name is John, I have brain cancer. Will you please play my favorite song?” The Bands performing didn’t know the song. But, the man coordinating the music said, “I will find it, and play it for you soon.” The kids sat quietly on the picnic table to see when the song would play.
When it started i began to videotape. The kids were timid and didn’t know what to do, because there were people watching. So Joe came up and put them on his lap and let the song play. He introduced John and Hope. He explained John was part of the reason they do these things.
It was a sweet moment. I love to see people loving on my kids. Joe made them feel safe and like they could enjoy the anthem John has adopted. I love these kind of stories.
This was the last video we took of John John before he went into surgery. It was our goodbye to our son. It is what moves us to do what we do today to support Brain cancer awareness and it is what makes Joe so special to us.
Every day is a gift from God, don’t ever forget to love the people around you.
Now, I know you wish you could repel upside down from a 65ft ladder on nothing but a rope. (he had a safety harness). This was so cool! What I regret is I didn’t get a shot with fireman Kevin! He was working his other job that day, so we visited him at work. We had a wonderful time. Of course John came decked out in his turn out gear with the custom leather made by Brent! The kids bought bow and arrows, I bought a hand scrolled cross for my husband and a tiny manger. We ate pizza and watched the jaws of life presentation. Which is way cool, btw……It was chill this year.
Still, I went home that night and went back through old photos of the last two years. I watched the videos I have taken of the kids. I remembered all the moments of joy, the blessings, and the hard times too. These are the days we were told we would never get the pleasure of having. These were supposed to be ghost days filled with unspoken grief. I never imagined I would be walking the same walk, two years and 4 months later, at the Evesham Fall Festival. It has become a marker in time, a tradition of taking back what this disease has robbed our son of. He Is A Fireman. He Knows His Goals. He Will Overcome Every Obstacle, He Will, Out Of Sheer Determination Defy All Odds. This festival each year, helps me remember to embrace the present and not to dwell on the unknown. It is hard. But, it is a refreshing reminder to wander through life picking out the gems and walking by the half-hearted things.
There has been a lot of people standing in the gap for me prayer wise. I thought to myself, God has seen fit to put this cancer at bay. How can I not believe more is possible? I think of two years and 4 months ago, saying goodbye to my baby as he was wheeled away into uncertainty. I trusted God implicitly in that moment. And for a year afterward.
It wasn’t until the cancer returned that I began to lose footing in my Faith. As I read backward through my blog posts I can see it happening. But, I have received letters from faithful friends and faithfilled Christians at moments when I just needed someone to help me make sense of it all. The joy and the pain. God has always been there, even when I could not talk to Him. He placed the right people along the way to encourage me. I am inspired by people I meet. The Evesham Fire Rescue, Joe, and the many other moms’ I talk to on a daily basis about our experiences walking this road……
With much on my mind and not enough words,