Thanks for coming by and visiting my page. First, a little about me! A friend asked me recently why we use butterflies so much. I wasn't really aware that we did! However, I do notice a trend here....and thats ok. The thing about butterflies, they are so fragile looking and yet, they are hardy and strong and amazing. To me, a buttefly symbolizes hope, and I guess thats why I use them alot, we HAVE to have hope to carry on!
Hope sees the invisible, feels the intangible and achieves the impossible. -unknown



That being said: I'm married to James, we'll celebrate eleven years this year. I am a stay at home mom of four beautiful kids - Two boys:
Drew 9 yrs old
Thane 6 yrs old,
two girls:
Shaylee who is 3 yrs!
Narissa our wee one is 2yrs.


I've been trying to decide what to do on my part of the website for awhile now. I finally decided to pull an idea out of the neither regions of the computer, that I'd worked on years ago but didn't like the way it looked or flowed together, and work on it and make it my "project" or.....my page.
I want to make it something that has to do with our life, about Shaylee's NF and how it has impacted us. Something that educates others about NF, chemo, and just the way that things impact lives, and how others responce can impact lives in a huge way. We have learned SO much during our journey, that...well, I'd like to try and share some of it.

Remember there's no such thing as a small act of kindness. Every act creates a ripple with no logical end. --Scott Adams






Shaylee's chemo is going well, you can read about her medical stuff here.

Neurofibromatosis? How do you pronounce that? Well, how we taught the kids to say it is this "new row fie bro ma toe sis". Break it down and its a little easier, OR simpler yet?? NF. MUCH easier don't you think? Thats what we call it, NF. Ok, now that I can say it, you may be thinking, what IS it! And thats a little trickier. NF is a genetic 'disorder' (not a term I like, but its the one they use) that causes tumors to grow along various nerve pathways in the body. The spinal cord/colum, optic nerves, various places in the brain, etc etc. Shaylee's happen to be on the optic nerves, and across the chiasm which is the area where the nerves enter the brain. NF also causes multiple cafe-au-lait spots and neurofibromas (smallish pea size lumps or nerve tumors) on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Plexiform (large tissue involving bundles of nerves) tumors can also occur anywhere.

Don't pray to escape trouble. Don't pray to be comfortable in your emotions. Pray to do the will of God in every situation. Nothing else is worth praying for. --Samuel M. Shoemaker



NF can also cause learning disabilities - if you click on the word, it will take you to the page I'm making about LD and NF. I had some problems with the "classic" areas that NF can affect: spelling, math, handwriting. While general knowledge of NF has grown by leaps and bounds in the last 20+ years (I can remember trying to explain to a doctor when I was a kid what it was..and thinking he must be an IDIOT if he's the doctor and doesn't know!), the fact that they've pinpointed these learning problems associated w/ NF for me personally was a HUGE thing! To know, and have proof that I wasn't stupid, wasn't faking it, that there was a reason I had trouble with those things....was an amazing thing!



God places the heaviest burden on those who can carry it's weight --Reggie White



Some Interesting facts about NF:
-->NF occures in 1 in 4000 births.
-->NFis more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined, but less known and has less funding for research.
-->NF is an autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation" (change) in the sperm or egg cell.
-->NF affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family, even one without family history of it.






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