Wednesday, March 9, 2016

Am I Making A Difference?

It's hard to believe that 2 weeks have gone by since I was in Canada.  It was such a heartwarming experience...And I find myself longing for more.

While I was at the symposium I had this woman come up to me, shake my hand and tell me how much she liked my talk.  She pointed to her daughter - who was sitting by herself, with her baby.  "Can you go over and talk to her...?"

So I did.  I sat with her.  Told her that her baby was beautiful...That NF wasn't the end of the world...That her baby is looking to HER ..And that to HIM...She was his hero!  

I tried.

But....I don't think any of my words helped.  

To HER....This was the end of the world.  To HER, her baby was 'sick'.  To HER, it was all her fault.

I felt bad for her....Mostly because I know exactly how she feels.

I hate NF with so much passion, that sometimes, I just want to throw my computer against the wall, and give up on all this THRIVING crap.


Then I see my kids.  I see them looking at me.  To MY kids...I am their hero.  The one they look to - and learn from.  I see MY attitude reflecting in them.  And THRIVING has become the most important part in how we cope with this diagnosis.

My words may not have impacted this young woman....But....Maybe they did.  All I can do, is set an example....Share my story and live my life.

And on those days where I get so frustrated that I want to give up.....I DON'T.


1 comment:

  1. I think in many ways you do make a difference. People may not see it or feel it in the moment but you do. The way you look at situations. Good and bad. And how you share everything The good days and the bad... I think it shows people how you can live a fulfilling normal life with NF and if you just take the time. Stand back. And take a breath. You can make it through anything. You teach people that you don't need a million. People around you. You just need a couple people who truly get you. And things will get easier. The way you talk about starting off in a low point and over time found yourself thriving is something special. And showing people this. Sharing this , and. Truly living what you speak you show that even the strongest thrivers have bad days. But come out the next day stronger. You reach people. They might not know it. They might not admitted it. But your reaching people. In those ways and more. You have made and are making a huge difference in the NF community. Without people like you. Far more. NFers would be keeping silent and hiding from the world. Never doubt yourself. Or if you are making a difference. Know and believe that you are. And with that I say Thank you on behalf of all those who listen to you and follow you who keep silent. And thank you for being you, for being a strong voice in the NF community. And for making a difference.

    With much love

    -from you know who