Thursday, April 26, 2012

CTF Teams Up with NASCAR to Raise Money

CTF has teamed up with NASCAR for the race on June 24th in Sonoma CA!  Ryan Newman in the #39 will be driving a car with the CTF logo on the hood and a special green and blue paint scheme to help raise money for CTF. The goal is to raise $390,000!

Please click this link and give a donation!  Any donation is appreciated.  And if you can't donate, at least go check it out and pass it on to your friends and family to create awareness!

Tuesday, April 24, 2012

An Answer to My Question

Ever since Sara was diagnosed with NF, I've wondered if I'm the reason she has it.  How can a mother not wonder if it was her fault her child turned out to be sick with a life long illness??  I know that many people who have NF have very few or no symptoms, and that Sara is the very rare case where the disease just gets out of control.  Her doctors told us that it was unlikely she received the disease from me or her father, but I still wonder cause they can't say for sure.

Well, thanks to a new doctor I saw for the first time last week I will finally have an answer to my question.  She's willing to test me for NF...and get it covered by the insurance!!  The test is VERY expensive and I didn't have a way (or willing doctor) to get it covered before now, so that's why I've wondered for the last 4.5 years.

And now that I have the opportunity to know for sure, I'm not sure I want to know at all.  But if I know, will it really change anything?  Obviously if its positive it won't affect my life and the way I live, and it won't change a thing about how the disease affects Sara either.  The chance that it would start to cause problems for me now is very small; the reason being that the disease thrives on growth hormones...and at my age I'm done with the growing part of life.  But that is the reason its been so progressive for Sara, and she still has puberty to go (when it usually is the most aggressive).  But that's something I can't worry about now. 

I'm nervous, but not scared!  And mostly I just can't believe that I will finally know for sure...was it me?

Thursday, April 12, 2012

A Secret Identity? Really?!?

It has been brought to my attention that I am raising no ordinary child!  I've said it many times that Sara's NF presents many challenges that I have to approach much differently because of her physical limitations or her advanced cognitive thinking.  But yesterday I learned something that changes everything...

I'm raising a super hero!!!!  I had no idea that my daughter had 2 identities, and one of them a complete secret even from me!

Last night as I'm cleaning up dinner, Sara is in the bathtub (as is the normal routine).  The bathroom wall is shared by the kitchen, so although I can't see into the bathroom I can hear everything she does clear as if I was right there.  She isn't the quietest child when she's playing.

As I stand in the kitchen I hear from the bathroom the following commentary.

"Oh my God, my goggles!  My super goggles!  And when I put them on I'm Goggle Girl!"

There's a few moments of quiet and then some splashing around.

"You can't catch me Goggle Girl, I'm to good at hiding from you.  No one can stop me from being mean to everyone!"  (All said is a high pitched voice).

"You can't hide from me Evil Mr. Duck, I can find you anywhere with my super goggles.  And no one is mean to my friends in my bathtub."

Lots more splashing with the random "Help! Help!" in the high pitched voice.

"I've got you Evil Mr. Duck!  Your time of being mean is over.  Now say you're sorry."

"I'm sorry!  I won't be mean ever again."  (High pitched voice).

"Yea!  Goggle Girl saves the day again!"

And at this point, I'm laughing so hard I have tears in my eyes.  I wanted to go in and tape it all to share, but I knew if I did she'd stop playing and the moment would be lost.  It makes me remember when the doctor asked me if she had mastered imaginary play.

Imaginary play....check!