Monday, September 16, 2013


Have you ever met anyone you've communicated with only over the Internet? Were you afraid? Excited? Nervous?

When the Internet became a phenomenon in the 1990s, people worried that the Internet wouldn't be good for social interactions and that people would just sit in front of their computers choosing not to even talk to people in the same room. People worried (in some cases rightfully so) about meeting people who were not who they appeared to be online. There were a lot of warnings against meeting Internet friends or at least precautions that should be taken.

My experience has perhaps been a bit extraordinary. To be fair, most of the friends I meet in person are from the congenital heart defect (CHD) community. We have shared very intimate experiences with each other regarding the life and possible death of our children. We often share photos of our children in the hospital. We cry with each other over our frustrations and celebrate with one another over our little triumphs. We are like family. So is it any wonder that meeting these friends face-to-face has been nothing but joyful?

Here is a photo of my heart-healthy son Joey with me in Washington, D.C. I was so excited to finally meet a mother who called me about my first book, Hypoplastic Left Heart Syndrome: A Handbook for Parents, about 16 or 17 years ago. Barbara McFadden and I had talked on the phone for quite a while about our children with HLHS. It was so exciting to meet Tara -- all grown up and doing great! -- and to give Barbara a hug. All of us were in D.C. to be advocates for the CHD community along with the Adult Congenital Heart Association and Mended Little Hearts.

I will be doing a bit of traveling the latter part of this year so I once again let my heart friends know where I would be and asked if any of them wanted to get together. I am overjoyed that it appears I will finally have a chance to meet the mother of a daughter with HLHS who I have communicate with for a good while. The daughter is an adult and is taking part in the Hypoplastic Hearts book that I hope to eventually get back to (after I finish updating/retooling my website and preparing for my Internet talk radio show!). I am eager to work on the book project because I want to know what kind of situations adults with single ventricle hearts face as they age. Knowledge is power and the more we understand about what happens as a single ventricle heart ages, the more prepared we'll be to deal with whatever happens.

One of the most active Facebook groups I belong to is Heart Mamas. I love that group! We have so much fun sharing, advising, praying for one another, encouraging one another -- it's like being part of a community of mothers, sisters and aunts who all love and care for each other. It's probably the most nurturing group I belong to and I'm so excited that I'll have a chance to meet some of my Heart Mama friends when I go to Chicago in November.

One of the worst parts about finding out your child has a life-threatening, congenital heart defect (CHD) is feeling alone. One of the amazing outcomes, after you reach out to others, is realizing that far from being alone, instead you belong to an surprisingly special community. The CHD community is full of wonderful people who reach out to strangers and help each other through our darkest times. No one understands us like we understand each other. By helping each other, we end up helping ourselves and, most importantly, we realize that we are not alone.

Please visit Baby Hearts Press at for resources for the congenital heart defect community.

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