I want to make a difference.

How I did it: When my son was born with only half of his heart, and I could find absolutely no timely information online about his condition, I started a yahoo group. In 2003 I scoured the Internet for a handful, maybe 5, moms like me that were in other web forums that were much broader than the topics I needed to discuss.

5 years and 515 members later, and we are long since off Yahoo and on our own web server.  www.hypoplasticrighthearts.org helps pregnant women and new parents cope with a life-shattering diagnosis and plan for the fight of their (and their newborns') lives. We also help families with children of all ages cope with things like five year olds asking if and when they are going to die, and teen agers trying to take over their own very complicated health care, or families with severely disabled children being denied benefits because people don't understand a disease you can't see from the outside, even as it's debilitating the circulatory system and threatening life.

I know I've made a difference in peoples' lives during some of the very worst and most terrifying moments they've ever known. I wish someone had been there for me when I was in that place, but I became that person for some and created and entire global network of people to pass the torch.  In a way my isolation early on was a blessing because it created a world where knowledge and strength can be shared and grown.

It didn't come from a desire to be altruistic or even with the thought that I was going to help other people at first. It started with my own desperate need for knowledge and empathy, and I was not alone in that need so I was able to use my experiences and my passion for my child to help others, and they in turn help more mothers and fathers find their way to some sort of normal life when it feels like that dream has been stolen forever.

Also, Feb. 14 is national CHD day - 1/100 children is born with Congenital Heart Disease, and 1/10 of those babies dies from it. It's the MOST common and most lethal birth defect, yet this may well be the first time you've heard of it.

Lessons & tips: Don't try to make a difference as an outsider. Find something beyond what you know or think is wrong in the world, find something you feel - something that creates a vibration in your soul that you can harness.

I used to volunteer at a nursing home, I was once the president of a nonprofit museum friends board, I sat on two different city council-appointed citizen panels, and I often supported local charities. I've always been a "giving" person, but until I felt a keen need to fix something in the world on behalf of my son, I never had the passion to affect change like I do now. I went from being a giver to a doer and a leader, and THAT is how you make a difference.

What has hurt you the most in life? What has inspired you the most? Take that experience and use it to find the place where you will give your most with the most pleasure - and THAT is where you will make the biggest  difference.

Don't get discouraged, and don't give up. There is a lot wrong with the world and a lot of people out there trying to fix it competing for resources. There are also a lot of people just standing in the way. If you choose the right cause for you, you'll persevere and you will succeed.

Resources: It all depends on what you want to do. Research organizations and determine overlap. Nothing is worse than trying to invent your own organization that repeats what someone else is already doing well - join the team, don't be a reinvent the wheel if there is a train going in the right direction.

If nothing is being done, study the organizations that are doing well in other areas and emulate them. Invite a difference maker to lunch and learn from him or her.Open your mind to the lessons of life and use them to help others.

Feb 11, 08:36PM PST | 0 comments | 4 cheers