I knew I was different, but no one knew just HOW different I was. I had seen Drs...Had physicals, and even with NF in out family AND with its tell-tale marking on my body, it would go undiagnosed for years!
I remember one time, while getting dressed for gym class, and slipping the gym shirt over my head, a girl making a comment about my "dirty back". "Ewww, Kristi, You need a bath!" I had never looked at my back before, I mean, who really needs to, right? But I knew I wasn't dirty. Another girl came up to me, before my shirt had fallen to my hips and poked me, "Ya, and what are all those bumps?" I just slammed my locker shut, fixed my shirt and walked out of the locker room, with my shoe laces flying.
I walked around the corner, out of site and reached my hand up my shirt and felt my back...I felt tiny bumps all along my spine and around my hips and I began to cry. I slid down the wall and put my head in my knees. The anger was welling up inside me and my breathing became fast. I tied my shoes and wiped my face. I looked over at the group of girls in my class who were laughing and pointing at me. I wanted to run away! What was this , that was happening to me? Why weren't my parents talking to me about it? Why haven't the doctors said anything?
I am now a mother of a beautiful and wonderful 14 yr old daughter. Like me, she has NF1. Like me, also struggles in school. Like me, she has few friends and is socially awkward. Like me, my daughter possibly could have gone "undiagnosed" for years. But, unlike ME, Bailey has someone to talk to, someone to trust. Breaking the cycle is what I am all about. I am so proud, that Bailey is proud of who she is.....because when I was 14 yrs old, I was so far, from where Bailey is.
I don't blame my parents, or the doctors for not recognizing the NF in me, in fact it just proves that we need help in educating EVERYONE. My mom, to this day, is in denial about NF and its affect on the family....she doesn't really have a clue about the ins and outs about the seriousness of it all, and just wants to avoid it all. Neurofibromatosis is scary, no doubt about it, but avoiding the symptoms will not solve anything. Not talking about the issues involved with NF, will only make them worse, when you eventually DO decide to talk about them.
We have been open and honest with our kids from the start. Explaining, guiding, sharing and we have found this to be a much better way to deal with the hugeness of Neurofibromatosis. It works for us. It amazes me...so much, but it does. Bailey seems to have taken off and become passionate about standing tall in her own NF and I couldn't be more proud!
Standing tall - is all part of breaking the cycle...and TURNING it AROUND! HAPPY TUESDAY!
Sorry for missing my Motivational Monday....I will post some pics of the MAKE A WISH PARTY SOON! :)