If your NF chapter does not have a group, just for women, I definitely suggest you start one!
There were about 20 of us, who met in the living room of our gracious hostess, who has NF and also has a beautiful teenager daughter who also has NF.
Everyone in that room was affected by Neurofibromatosis in some way. I met mothers with spontaneously affected children, a few single NF1 and NF2 ladies, a non-NF woman who adopt NF1 children, and others, like me.
One of the first thing I heard from one woman was, "I would never allow myself to pass on such a horrible condition." Followed by a few nodding heads. "Uh-Oh", I thought, this is not getting off to a very good start.
I was shocked and a little embarrassed when a sweet woman walked in and recognized me. She came right over and gave me a hug, telling how much my writing has helped her through some difficult times. It took me a moment to place her, but then I remembered that I was a follower of her blog about her NF1 son.
I may put myself out there on the web, I may even be speaking in front of NSOF in two weeks, but I still am uncomfortable in public. But that little embarrassment helped empower me to share my own perspective - to try to encourage these people I had just met.
That's what 'Thriving' is all about -- sharing with each other, being real and honest in front of the world, even if it makes you uncomfortable.
The group of ladies talked about bad days, and the REALLY bad days that NF has brought them. I talked about my bad days too...but I added how I wasn't going to let them dominate my outlook on life....Even the days we spend getting chemo treatments, or when we are given another dose of "bad news".
You don't know what you don't know - and if you've only seen the depressing negative side of NF, never realizing that fighting back is an option, its tough to imagine doing it - it wasn't easy for me.
But here I am. I am fighting a world that is ignorant to the world of Neurofibromatosis, to not only help myself as I battle this disorder, but also to help my children and others see past this diagnosis and to get the world realize that we are just as important, and just as worthy as everyone else.
It was truly an emotionally inspiring day, as we shared our ups and downs...our struggles and triumphs....and a grew a bond that will never be broken.