Monday, February 22, 2010

Motivational Monday

When I tell people that I have Neurofibromatosis, I always like to watch their their face, for a reaction. Sometimes I get get shock...sometimes it's fear...but most of the time it's confusion.

I've personally known about 'NF' my entire I've had 35 + years to read up on this disorder and how it affects people. But I never wanted to believe that it was something that would affect me.

Even at 5 yrs old, I could say the word "Neurofibromatosis", and explain to other people that my older brother Mike was getting chemo for a brain tumor.

But 'NF' was always something HE had....Not me. It wouldn't be until I was 33 yrs old, that I would be officially diagnosed with NF myself. A devastating blow, but one that I knew was coming.

I had the bumps, I had the birth marks, I had the freckling...But why had I gone undiagnosed for 33 yrs? Why had no doctors recognized NF in me? I was scared, but at least I knew what I needed to do, for ME and for my children.

My oldest child who has NF has made me the proudest I could be...She has started a blog (without prompting I might add) About being a child living with NF. I am quite impressed with her. SHE is continuing the legacy.

Life has its twists and turns and unexpected bumps in the road (pun intended) -- So what are you going to do with that? NF has taken our family down a road that I never ever wanted to go down. But here we are. The choice is up to us in how we choose to make our could be a long and torturous one, or we could choose to take what God has given us and do good with it.

NF isn't fun, I know that and understand that. But we can't just hide and suffer in silence. People need to know what it's like living with NF. Please reach out.... I know what it's like to want to hide from NF. I was scared too. The best information comes from people who actually have Neurofibromatosis. All we have to do...Is to get people to LISTEN.

1 comment:

  1. Ya trying to hide our NF just makes it worse. If somone wants to judge or make fun of things we have ZERO control of ..... well screw'em!!!! It's having more and more NF friends that makes me feel less of a 1 in 3000