Sunday, October 2, 2011

We are the lucky ones.....

I have recently been working on my fundraiser for Children's Tumor Foundation (CTF) Spring For A Cure 2012. It is our second annual family festival. I have been contacting last years vendors and looking for new ones. One vendor I found was they have a "flavor" on the month and donate $1 of each sale to a charity. After some rescheduling they found themselves on September 28th without an October Charity. That was also the same day I emailed them. So guess who became their October Charity? CTF!!!!! I had one day to write up a blurb to be included in their monthly email.

In writing my blurb on CTF and what they do and what NF is, my mind recalled all the amazing people I have met since starting this journey of being a NF wife and mother. My mind raced with all the different ways NF manifests itself. NF is as different and unique as the individuals that have it. I found myself writing that my husband and I really do consider ourselves one of the lucky ones, it didn't hit home until I actually typed it and verbalized it, that I realized.....YES we are one of the lucky ones.

And I love the supportive NF family you become a part of online through blogs, facebook and if you are lucky even in person. There is an awesome Facebook group called "NF moms rock" they really do rock. Talk about a source of support 24/7. I never have to feel like I need to apologize for my feelings, fears, worries or rejoicing at small victories such as a stable MRI.

And I love the way the news of a family needing support and prayers runs like wild fire through the network of NF families. When we hear of a bad MRI or counts to low for chemo we get out there and we pray and we repost for more prayers from others. We NFers are a force to be reckoned with.

And I love the response I have gotten from organizing Spring For A Cure. The help and the well wishes from complete strangers. One of the vendors thanked me for being an ambassador for NF....ME, I couldn't believe it. I never thought of it that way, none of us moms or dads do. All we know is we are fighting a ticking time bomb with our children's lives to find a cure. And along the way when we lose one of our group to NF we mourn collectively as a family does. Because we are, NF has made us a family. At times my NF family is what has gotten me through one more chemo treatment, one more MRI, etc.

There is power and strength in numbers and it is great to see our NF family grow, because that means we are getting stronger than NF. We are making it to a cure one step, one fundraiser, one chemo appointment, one MRI and one tear at a time.

The awesome feeling that comes from having this on your shoulders can be empowering and overwhelming all at the same time. The Lord has blessed us with this task and so even though I didn't think about I will try to live my life each day to say I AM an ambassador for NF. I do it for my husband, for my son and for everyone else effected with it.

Together we are unstoppable!!!!!!

Watch out NF.....WE WILL ROCK YOU!!!!


  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?



    1. Sorry i just got this comment. You didnt leave an email.

  2. Oh my goodness, your son is so cute!!! Your story is so incredible! I can't imagine how strong of a woman you are. Thank you for sharing with me...

  3. Thank you so much!! He keeps us on our toes for sure. We love him so much. I also enjoyed your blog!