Sunday, October 24, 2010

My Heart is Full.......

My heart is full today with thoughts of NF. As I reflect on my life and the path NF has taken my family my heart and mind cant help thinking of the amazing people I have met. Amazing women that help lift me and inspire that if it werent for NF would never be in my life.

I have been working my fingers to the bone lately it seems like working on my fundraiser Spring For A Cure. some days I feel like I am talking to a wall. Some days I have such fierce passion to help find a cure that I get tears in my eyes and I feel like I am stronger than Wonder Woman. I am Wonder NF Mom!!!

As I reflect on what inspires me and what gives me strength to continue valiently on this fight 3 things come to mind as to where my inspiration comes, what feeds that inner fire in my belly?......

1) First and foremost it is my love and faith in my Heavenly Father. I know he will not give us more than we can handle. And that through our trials he brings great blessings as well. Those blessings (in part) are #2 & #3. I know that he loves me and wants to see me be the person he knows I can be. He knows my full potentional and his trials are to help me reach that potential. He knows the greater picture and even though at times I dont see how good could come from a 2 yr old having a tumor I have faith that he does. And I have faith that through me I can help bring some good about.

2) Kyle. When I think of what he has gone through and how much he loves life and just has fun and is always ready to go I get teary eyed. I dont know if there could be prouder momma out there. He is the greatest blessing in my life. Sometimes I cant believe the lord has trusted him to me. I feel a great weight in being the mom he needs me to be. How can I not fight to make his future brighter? He loves me unconditionally. I will fight for him every inch of the way.

3) NF Moms. NF Moms are some of the most amazing women you will ever meet. Our kids have been diagnosed with a disorder that not many have heard of. Our kids have been diagnosed with a disorder that various from person to person, a disorder that can go from mild to fatal within a short amount of time. NF Moms find time to support other moms when they are crying about the uncertainty of their own children. NF moms will get in NF's face and raise $40K at one fundraiser for research in the name of their daughter, NF moms will talk to total strangers to spread NF awareness. And I say NF moms but dont be fooled there are NF Aunts, Cousins, Sisters that get in and get their hands dirty all to support the ones we love with NF. I have personally received such great strength and support from women across the country. Woman I have never met but I know they are there for me and I hope they know I am always here for them.

There is one NF mom that has been on my mind a lot lately. She is a very dear sweet NF mom that has NF herself. Her son was also diagnosed with NF. He is her life. She lives every minute for him even though it has been almost 2 years since he earned his angels wings. But Noelle is amazing. She took her trial and pain of losing her son and created a foundation in her sons memory, . She collects new stuffed animals and sends them to children with NF, also provides them to the Police and even the FBI to give to children in crisis. As of February of this year she has given away over 400 animals.

With NF 3-5% of the cases turn malignant and these brave children/adults can lose the battle with NF. I have met so many amazing families affecting by NF and all cases are so different.

Everyone can do something. One mom is auctioning her daughters drawings, others are are hosting support groups, helping inform the community at booths at community events, others are holding fundraisers. If you dont have time or money to do some of these things, never fear there is something you can do.....Educate!!!!
The single most important thing we can do is educate ourselves and educate others. I have always said "knowledge is power". We dont have to sit back and just accept NF. So please join me and Fight, Fight, Fight against NF!!!

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