When we decided that we needed to do more it was shortly after his surgery on his eye when he was just 6. Surgery to reduce his neurofibroma needed to be done and we are forever grateful for Dr. Katowitz but it caused him so much pain that Beth and I wept for him with not much else to do. He was resilient, and he was amazing. He was MY BOY.

And then today. Today I saw my REAL hero in my hometown newspaper. Reggie W. Bibbs and I are acquaintances at best, Facebook friends for sure and have an unfortunate tie that binds us, Neurofibromatosis. Like my boy Jack, Reggie has NF. I am merely the father of someone that has NF, so I can’t fully understand Reggie’s battle.

My friend, Steve Paris’ daughter Mary Elizabeth died last year. Cancer killed her. 12 years old. Can you imagine that pain? I attended her service and was struck by a number of things. I was amazed at the grace and dignity of the Paris family. In what is the worst time in their lives, they rose up and celebrated Mary Elizabeth and her impactful life.

“I like warm compresses on my hands please. Helps the needle, you know. May I please have the numbing cream too? Use my left hand; I think the veins are better. Don’t forget to flush the needle after please. They forgot once during chemo and they had to re-access my port. That sucked.”

“I like warm compresses on my hands please. Helps the needle, you know. May I please have the numbing cream too? Use my left hand; I think the veins are better. Don’t forget to flush the needle after please. They forgot once during chemo and they had to re-access my port. That sucked.”