Friday, May 8, 2009

Going Public

The news has spread. After many months of keeping Hank's illness to ourselves, only telling family and close friends...we have gone public. It's scary. And wonderful. We have tried so hard to protect Hank from being "different" or being treated like a sick kid. But it was inevitable that we would have to tell others. With only 18 days left of school, I hope we can get through it without kids teasing him or making him feel like a freak. (my big fear)

Part of me wishes that we could just not tell a soul, quietly go to New York, have the surgery, come home and resume life like none of this ever happened. But that is not reality. In reality, we can't do this alone. Not only do we need financial support but we need moral support as well.

And so, over the last week I created a web site and today it went "live" and the emails were sent to notify just about everyone we know. And even on Facebook, where Jeff and I have probably close to 200 friends between us...I started a group. To see that 30+ people have signed up is amazing. It got me thinking...what if 100 of our friends joined our group, and each of them told 100 people, and so on...Soon, Parry Romberg's wouldn't be something that no one ever heard of. People would actually know what it is. And then perhaps more research would be done because all of a sudden, an "obscure" disease becomes "mainstream". It would prove that just through friends, we can make a difference!

The outpouring has been overwhelming. Those who had no idea about Hank's PRS were stunned and those who knew were glad to have a site to send to family and friends. The promise of prayers and good thoughts were the best! Prayer is a powerful thing...we know the prayers are giving us strength!

Hank continues to feel good. He took his "belt test" at karate tonight and passed! He is now "high" purple! He was so proud when he showed me his new belt! The karate gives him confidence and he is learning to protect himself, which makes Jeff and I happy. Lots of accomplishments this week...First Holy Communion, new karate belt... life just continues on. And for that I am grateful!

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