Sometimes...I get caught up in my own little world. In my own problems. I cruise control through one day, to the next and just try to remember to breathe. There are even some days, when Neurofibromatosis never enters my thoughts (those days are rare, but they DO happen)
I forget that I am driving around a HUGE van with NEUROFIBROMATOSIS painted across the back window...And just go about my days. For us, dealing with NF is OUR normal.
Occasionally, someone will ask about the hard-to-pronounce word, that takes up the entire length of my back window...But for the most part, I get no comments about it.
(it needs to be re-painted desperately)
Today...While grocery shopping at Target, I came out to something stuck on my windshield. "GREAT!", I thought..."A TICKET!" I wasn't parked illegally...My tags aren't expired....
When I got closer, I noticed it was a hand written note.
First thought- Someone must have hit me and left a note for insurance purposes.
But it wasn't that at all. It was from a mother. A mother of a little girl who has Neurofibromatosis. She noticed my van and wanted to reach out. It made my heart sing....and break, all at the same time.
What an amazing thing!
THIS is what gets me excited about spreading awareness about NF. Reaching out and helping someone through a difficult process is why God put me on this Earth...and it feels great, when someone enters my little world, and feels better because of that.
THRIVING with NF isn't just something I do at home.
It's VIRAL!
THRIVE ON!
Thank you for this blog. I was diagnosed 22 years ago with NF and lived in self-denial until about a month ago! I have only recently started to accept my condition by taking better care of myslef and have realised that I am not alone with some unknown condition that nobody cares about!
ReplyDeleteThank you for this blog. I was diagnosed with NF about 20 years ago and have living in self-denial until recently. I am now starting to face up to it and look after myself. It is reassuring to know that I am not alone with some rare condition that nobody knows about.
ReplyDeleteINCREDIBLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! LOVE this!
ReplyDeleteI have NF1 and my son does too... I really do feel like this is a huzh hush disease that doesn't have a voice... It feels like they are doing nothing about it and that nobody really cares
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